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[intro music]

 

Olga Aureliano: We are here, together again with the podcast Defiças Portraits. I'm Olga Aureliano and I'm part of the team from Ateliê Ambrosina, the NGO from Alagoas that makes this channel, along with Western University in Canada. In the last episode we were with Pablo de Assis and Giovana Nicolau from Curitiba/Paraná, discussing the problems of the relationship between clinical psychology and autism, along with personal accounts of the lives of the co-creators, both autistic. In today's Pod!sso episode, Paulo Henrique (a man with blindness), talks to Saulo Vinícius about how visual impairment is crossed by several issues such as affectivity, technology, and accessibility. We follow along with them.

 

[intro music]

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Paulo: Article 2 - A person with disability is considered to be one who has a long-term physical, mental, intellectual or sensory impairment which, in interaction with one or more barriers, may obstruct his or her full and effective participation in society on an equal basis with others.

 

Saulo: Excerpt from the Brazilian Law of Inclusion.

 

[beep]

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Saulo: Hi everyone.

Paulo: Hi everyone, good morning, how are you?

Saulo: This is the beginning of Pod!sso [‘Can that be!’], our episode funded by the Portraits of Brazil with Disabilities grant.

 

[beep]

 

Paulo: Well, my name is Paulo Henrique, I am from Presidente Prudente, I am a light-skinned man with long brown hair tied up in a low bun, my right eye is smaller than my left, my nose is a little potato, my mouth is big, and I have a beard. I'm wearing a green T-shirt and brown and beige checkered shorts, tennis shoes, and I'm sitting here at a table, next to Saulo, in one of the rooms of his house. So, Saulo, tell us a little bit about yourself.

 

Saulo: That's it, Paulo. I am Saulo, also from here in Presidente Prudente, I am a dark-skinned man, with a big nose, big black eyes, my hair is currently discolored blond, my lips are also big, and I have a bit of hair on my face that I can't yet call a beard. And I guess that is it. And what do you do here in Prudente, Paulo? Tell us about it.

 

Paulo: So, yes... I have a degree in Pedagogy, currently I am studying Geography and I develop other works, right? I also work on the UNO project at UFRJ, UNO - Um Novo Olhar (UNO - A New Look), as an audio description consultant, I do accessibility consultancy and I also do research at LAG, which is the Laboratório de Arqueologia Guarani do Mar (Guarani do Mar Archeology Laboratory), which is the Presidente Prudente Regional Archeology Museum. And you, Saulo?

 

Saulo: Well, I am also a student here at the FCT/UNESP in Presidente Prudente, I am a student of Geography. I am also part of the Afronte Collective, and besides that I am also involved with the cultural movements here in Presidente Prudente, more focused on the issues of street poetry and rap.  Can we start then, our conversation?

 

Paulo: Let’s go!

 

Saulo: And to start, people, we selected a news article from CNN Brasil from August 26th, 2021, which brings us the following data. According to the IBGE - Brazilian Institute of Geography and Statistics - survey, 8.4% of the Brazilian population, over 2 years old, has some kind of disability. This represents 17.3 million people. Among this population with some kind of disability, 10.5 million are women and 6.7 million are men. In relation to where these people live, Paulinho, 9.7% of them are in rural areas, while 8.2% of them are in urban areas. And there is also the issue of education. Through this IBGE survey, it is indicated that almost 68% of the disabled population is uneducated or has an incomplete elementary school education. And to finish, it also brings some details related to ethnicity for us to observe: 9.7% of them were black; 8.5 brown, and 8% white. And then it is that question, Paulinho, where are these people?

 

Paulo: So, observing this data, we notice that the majority are women, that the majority are also dark-skinned people, and where are these people, Saulo? Where are these people?

 

Saulo: Well, Paulinho, I think that to start answering this question of where these people are, it would be great if you could tell us how, through the laws, through the organizations, the question of inclusion and accessibility is dealt with.

 

Paulo: So, everyone, the relationship between society and disability... it is good to bring a contextualization, a brief historical contextualization, in four parts. The first part in the ancient times was called exclusion, because people were left to die, forgotten or thrown away, abandoned, you know? At the mercy of their own luck, without any conditions. To make these people invisible, right? So that they wouldn't be noticed. And then, as time went on, came segregation, that is, these people were perceived, but they were still on the margins of society, they were not accepted. From 1920, 1900 on, until 1930, we have the integration part, right? And integration is this moment in which people with disabilities - quotation marks, "are accepted in society", however, it is as if they were invisible or invisibilized, because they were not heard, didn’t have their own voice... it is as if they were marionets. And from 1930, 1940 until 1980, and currently, we have the process of inclusion, because, I believe, there is not a total process of inclusion and there are also situations and moments, where there is no inclusion. And inclusion - this part of history, in this historical moment where people have a turn, are listened to, are not invisibilized. And from that, in 2007 there was the International Convention on the Rights of Persons with Disabilities in New York. And there, in this convention, they considered a displacement. What displacement? From disability that was placed, inserted in the subject, it was displaced – it displaces - into the environment. Therefore, “person with disability” and not “[the] disabled [deficiente]”, because this “deficiente” [“handicaped”] is as if the totality of the subject was only the disability, right? As if the only thing that could be perceived in that individual was what he lacks, and we offer so many other potentialities.

 

Saulo: Paulinho, can you give an example of what this displacement is?

 

Paulo: Ah, a very good example is, if we think about a person in a wheelchair, because if they arrive at a school, at an amphitheater, and there is no ramp, right? Where is the disability? Because the person is there, he/she is present, thinking, communicating, socializing, and the environment is not adequate, the environment does not provide conditions for this person to fully enjoy that space. I believe that this is a very contrasting, very solid, or rather, palpable example that we see on a daily basis. From the 2007 convention, we arrived in 2009, the year in which the National Congress of Brazil passed the International Convention on the Rights of Persons with Disabilities as a Constitutional Amendment, right? So it has the force of law. It is as if it were - is - part of our Constitution. And as such, it needs to be respected. In 2015, this is consolidated and structured in the Statute of the Person with Disability or the LBI - Brazilian Inclusion Law. [beginning of the track in the background] And the law brings some considerations regarding what is a person with disability and what barriers prevent the full access of these people in equal conditions with the others. And that is what we are going to talk a little bit about now.

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[track: original beat by Saulo Vinícius - @alajerecords]

 

Saulo: That's it, folks, so, moving on now to our second part of the podcast, after this perfect contextualization of Paulinho, we are going to start talking about these barriers that are presented in the Brazilian Law for Inclusion, how they become concrete in the daily life of a person with disability. And the first barrier that we are going to exchange ideas about today is the physical barrier, and since Paulinho and I share the same space, which is the University, I would like us to start there. It that okay friend? In what way do the barriers become concrete for you in a physical way, when you access the space of the university?

 

Paulo: So Saulo, at the University it is something even funny to talk about, because, for example, if we are dealing with physical barriers, the UNESP campus is old, it is more than 60 years old. Even though there are newly constructed buildings. Why did I say it was a little funny? Because at UNESP in Presidente Prudente there is tactile flooring in very specific points that do not contribute to a greater autonomy in locomotion. For example, on the external sidewalk of the campus. And here comes the question, right? Are the classrooms, are the discussions in each course held on the sidewalk? Because it is necessary to have class, to attend class. And other points are inside the library, near the university restaurant and near a laboratory [center] that discusses inclusion. But these specific points of tactile floor do not connect, for example, the Pedagogy Department to other places. For example, if I want to go from the Pedagogy Department to the Geography Department, or from Geography to the library and back from the library to Pedagogy, I will need someone's help. No matter how mature I may be in orientation and mobility, which are techniques used for people with disabilities to move around, no matter how much I may have this ability, many times it is not enough for this locomotion in a more autonomous manner. And, in this sense, tactile flooring would provide this mobility in a more independent manner, and not only I would benefit from a college that had well-constructed/uninterrupted floors, or one without holes, or with signs, right? Any other person, be it an elderly person, be it a person who uses a walker, be it a mother who is pushing a stroller with her child, be it someone who has just come out of surgery, a post-surgery patient who can't walk very fast. So, anyone can benefit from an University that has no physical barriers, right? A person who uses a wheelchair, it’s the same issue. So in the University, unfortunately, this is one of the barriers that is constantly being constructed, Saulo.

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Saulo: And it's a fundamental barrier, right? Because if you can't move around easily inside the University, you simply don't experience this space. What I keep thinking here is that as a person who has vision, I see the UNESP space, when I look at it, I see it as something very integrated. And when you report this it is as if there were islands within that space for you, not this integrated space.

 

Paulo: It's a space that truncates this process of free movement, you know? And then you end up restricting, segregating, the spaces to which I can be interested in going.

 

Saulo: And when we look at public issues, there is a very strong discourse in our society that incentivizes that private enterprise could provide answers or already does better than in these public spaces. And this is something I would like to ask you. Do you think that these physical barriers are also imposed in private spaces, such as shopping malls, stores, or things like that?

 

Paulo: Of course, because, for example, on sidewalks, in houses, buildings, commercial buildings, movie theaters. Some spaces, some situations have tactile flooring, however, sometimes the tactile floor is placed just for the sake of being placed, right? Because, in order to respect the law, people simply do it and don't think about the functionality of it. It is not every public space that is not accessible, nor is it every private space that will have full accessibility. It is a process that we are going through, and people need to understand that, for inclusion to take place, one of the key principles is accessibility, and it can’t be seen or understood as something onerous, as something costly for one or for a specific public. It is for each and every person to be able to enjoy it in a full way.

 

Saulo: Besides UNESP's space, there are other public spaces too. Including spaces for socializing or for culture and things like that. And here in Prudente we have a place, that came to my mind now, that’s very well known, right? Almost a post card, which is the People's Park, which would be the public space that represents Prudente. Do you feel that in that space, that’s like postcard, that accessibility is in this place?

 

Paulo: So, we started talking about the University, then we went to the sidewalks, houses, buildings, commercial buildings, and now we come to the leisure area. In this sense, some details are missing, details that make all the difference. So, the People's Park still needs to be - in quotes - "adequate" in many, many aspects.

 

Saulo: It's still not totally a ‘people's park’. I think it is good when you bring this idea of the city as a whole, because for us who are studying Geography, we look at these spaces... it was even an idea brought up by the great geographer Milton Santos, as if they were fixed, right? Fixed structures in the city, where there is a flow through which we travel, relate to, transit and go through these spaces. And it is as if we had a city in which the fixed makes the flow of people with disabilities totally unviable. Is that it? Can we move on to the next barrier?

 

Paulo: Let's go to the next barrier, Saulo.

 

[beep]

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Saulo: And then, we get to the issue of the attitude and communication barrier, and as we were talking about public buildings, private buildings, I will go straight to the first point. In what way in the services, in customer service, do you feel that this barrier is raised for you?

 

Paulo: Well, Prudente is a university town, and the strong point of Presidente Prudente is service, you know, the offer of services. And, for example, two situations that are annoying to experience, for example, when I arrive at any store and if I am accompanied, the conversation is never with me. The conversation is with whoever is next to me, as if I don't listen or as if I don't speak, as if I were an object, two sticks that have no life. I am here, I talk, I listen, in short. And another issue is also in Uber, because the drivers sometimes ask questions that are a little bit tricky, you know? One of them was: are you 100% “deficiente” [disabled]? And then that day, I couldn't stand it. I laughed, you know, because as I've already mentioned here, “deficiente” [disabled] is like treating the person as a totality deficient. Then I laughed, right, because I am not 100% deficient. Disability - this characteristic - is ONE part of who I am, I have so many other qualities. So, you can't perceive a person by this or that characteristic, or even by what they lack. And I also perceive, for example, the issue of deaf people, right? Hearing impaired people. Is the commerce in Presidente Prudente ready to attend to these people? Is there one or another employee of this or that store, who master Libras [Brazilian Sign Language]? Or that minimally can communicate? It is a question that needs to be asked and answered, as soon as possible. And I move on to another dimension, which is education. I see this issue of education as fundamental, because I experienced the issue of education at the University. But since I studied Pedagogy, I also perceive this in municipal and state schools. I believe that this point is much more worrisome, because most of the time it’s children - not all of them - but in many situations, they can't verbalize or express what they feel. And so, they are oppressed and placed at the margin of what could be a transforming process.

 

Saulo: When we talk about relating, communicating, there is something that completely intersects with this, which are our affective relationships. Beyond being a man with disability, you are a gay man with disability. In what way do these barriers affect your affectivity?

 

Paulo: It hits you directly, Saulo, because like this... Research shows that visual perception, the sense of sight, takes up 80% of all the senses we have, right? Which is touch, smell, taste and hearing, along with sight. So, when we don't have vision, these other senses have a new arrangement and begin to account for what our body perceives. And man, in general, the male figure, is very visual, right? Very different from the woman, who is more of a touch thing - I'm generalizing, it's not everyone who is like this. But, for example, in the LGBTQIA+ community there is a lot of this question of photos, the fit body, the white male person, who has to have a car, money, a house, a job, and this becomes a standard. And it is a fixed standard, that is, if it is a man who is chubbier, who is hairier, who has dark skin, who is shorter, he stands outside of this standard and is also put in the margins. And then, in this sense, men with disabilities come in. And sometimes some questions come up, which are a little unnecessary and even inappropriate, right: "- Do you have relationships? How do you have sex?", right, "- How do you do this? - How do you do that?”. Jeez people! We are people first before anything else, the fact that I can't see doesn't only say who I am, it ALSO tells who I am. This characteristic of visual impairment is not enough to explain my totality, right. There is no way to capture the uniqueness of a person, the uniqueness of someone. Not even the name is enough, right? So, sometimes we are labeled as photos, as mere bodies and they don’t fit in, right, so the fact of exclusion due to disability hits affectivity full in the face.

 

Saulo: I’m going to take this as an opportunity to tie in something else then. I wanted to throw something else into our conversation which is the idea of dependence and interdependence. When you bring up this issue of the standard or of simplifying people to only one feature of their identity, among several others that exist, we also have very clearly the issue of disability linked to dependence. Then, in what way does this also become a barrier in your day-to-day life?

 

Paulo: This is very interesting, Saulo, because the issue of the concept of care, dependence, interdependence, are studies from Anthropology related to disability, to the category of disability. And any person can be dependent, and in some situations, some people with disabilities will really depend on a person, for example, to feed themselves, perhaps to move from bed to the bathroom, in short, infinite situations. But this needs to be applied to those who need this help, right? It is not because I use a wheelchair, it is not because I do not have vision that I will depend on someone else for everything. Once again, this comes up against fixed standards, you know, these fixed identities, as if every person with a disability would depend on someone else for everything, and notice: the clothes we are wearing were made by other people; the food that we buy, that we eat, was produced by other people; the chair we are sitting on was produced by other people. So, this is a dependency relationship. Dependency cannot be understood as something negative, right, but as this attitude, this behavior of exchange. So it's like something positive, one person depends on the other and in this line of reasoning we perceive the interdependence of one person on the other. And care comes in this question of really caring for that which can provide something, caring is fundamental in any and all relationships. So it is not because one lacks sight, because one lacks hearing, that it is necessary to have care that is exacerbated, care that is excessive, and much less the induction of a dependence on everything.

 

Saulo: Paulinho, we synthesized the physical barrier in the idea of the city as a maximum representation of this barrier, right? I think then, that it wouldn't be wrong to synthesize the social relations themselves as a maximum of this barrier, when we are talking about the attitude of communication?

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Paulo: Very good Saulo, that's right. Because social relations are imbued with this, communication and attitude, therefore, this is a very good synthesis that you bring for us to reflect on.

 

[beep]

 

Saulo: And then we come to the third and last barrier in our conversation, in this very important block that we are doing here, which is access to technology. Now with the pandemic, but even before the pandemic, we were already talking about the city of the future, the world of the future, the world of technology, the world of 5G. And then, in what way does this barrier, the barrier of technology, impose itself on you in your day-to-day life?

 

Paulo: Yes, I hear a lot of people saying that technology was thought of, it was thought of to help us, not to make us subservient. With the pandemic and during the pandemic, this increase, this intensification of the digital world was striking, it is striking. And then, we can bring up two dimensions, which are the relationships at work, and education, right? Because of remote learning. With respect to work, if we take for example my situation, which is that I don't have the vision, it's already something difficult, right? Because if I have to install software, a program on the computer, the company may understand that this will bring more costs to the company, or the installation of tactile flooring, or even a change in some attitudes, which are necessary, this may be perceived as something negative, because it takes the person out of their comfort zone. And these work technologies must be thought of for all audiences, because we have much more potential, we, people with disabilities, can offer as much as what identifies us, right, which is the lack of this or the lack of that. So, if we come up with the technology - I will go to another sphere, which is education - because in remote classes, many times, the teacher does not master audio description, sometimes they don’t know how to communicate in Libras [Brazilian Sign Language], and this makes the teaching and educational process more difficult. And then, once again, exclusion is configured. And still in technology, we can think, for example, in electro-electronics, in household appliances, such as: washing machines, the microwave panel, the digital panel of the refrigerator or the freezer. Still, I think the thing that is the most developed and undergoes the most updates are televisions, even thinking about artificial intelligence and the cell-phone systems that are entering television sets.

 

Saulo: Of these examples that you are giving of electronic devices, we have the cell phone, but beyond the cell phone, we now have an extremely important issue that has also been strengthened with the pandemic, which is the issue of applications. Because, as you mentioned about Uber, besides the interaction inside the car, you need to call for a ride or you need to use an application to send a message, or for everything, right? Nowadays we have apps for everything. Is this a barrier that is encountered as well? With applications?

 

Paulo: Very good point, Saulo. The applications, I access, you know, people who are visually impaired in general, access them through screen readers. And if the application is not accessible, the screen reader can't read what is being expressed. For example, there is a car application that when it is time to confirm the ride, the confirm button is not listed, it is not entitled. And then, the screen reader passes over the button and says: button. And then, I don't know which button that is. I only found out after I asked a friend who has vision to tell me what was written on that button. Then, people may think: "Well, but couldn't you ask for help? But, can you imagine having to ask for help all the time? And then, we are at the mercy of the other.

 

Saulo: Back onto the issue of dependency.

 

Paulo: Exactly, this is a negative dependency. This is a dependency that does not bring autonomy. So, the applications need to be intuitive, need to have accessibility, need to be accessible to people who can’t hear or communicate through Libras [Brazilian Sign Language], audio description of images... and all this already exists in the market, right? All that is needed is for the companies to seek these services and implement these resources so that there is full access for any person to the applications that contribute so much, right, to moving around day-to-day in the city.

 

[beep]

 

Saulo: That's it, Paulinho, I think that when we talk about a future world, you know, through technology, it is not possible to build a future world carrying so many problems from the past. So I think it is very important to pay attention to these things, especially when we have the opportunity to work on them, you know, like this moment of transformation that we have been experiencing not only here in Brazil, but all over the world. I think that when we comment on all these barriers and see how they are imposed basically in your day-to-day life, in your daily life, in your relationships, in the environments you frequent... this answers a bit of the question, "where are these people?" Or, "why aren't they here", right? I think that we can now start to comment a little bit on this. About how it is necessary to demythologize that it all boils down to “this reason”, or that it is only “this reason”. Can you comment a little bit on this for us?

 

Paulo: Of course Saulo, the maxim of the Brazilian Inclusion Law says, "Nothing about us, without us.” This maxim, it was created in ‘81, by a movement of black people with disabilities, when Nelson Mandela got out of prison. And this phrase says a lot, you know, because nothing about people with disabilities can - nothing - can be done without our speech, without our voice. Because we are not fixed identities. We may have some similar characteristics, for example, among people who identify themselves with blindness or low vision, but we have much more to offer, you know? So, for inclusion to be effective, there must be accessibility. Accessibility is one of the cornerstones for there to be inclusion and, in this sense, it is necessary not to make people with disabilities invisible, but to give them a turn, a voice and to listen, just like this public notice we are working on now, which is Defiças [Disability] Portraits. Could it be that if this opportunity had not been offered, at other times we would be able to be recognized and express what we feel? And then, the protagonism of the person with a disability, right? Hence, respecting the place of speech of these people. And I believe it is very interesting that we also think about hospitality, about being hospitable, like what Maria Teresa Eglér Mantoan brings up when she discusses Deleuze's Philosophy of Difference, about being hospitable. Of receiving the other the way she/he is and not trying to control or label, to classify, to frame what we think about the other, you know? Because, we perceive what the other expresses, but then this perception is not always what the other meant to say. So, this attentive listening, this not wanting to control so that we can really have a democratic society, you know? An inclusive society.

 

Saulo: Well, folks, since the beginning of the podcast, in our episode, we saw how the law itself recognizes that there are several difficulties and barriers that are imposed on people with disabilities, but beyond that, always going far beyond that, we cannot stop at the barriers, but we must always seek ways to advance and make society a more inclusive and more accessible space, as Paulinho himself commented here with us. It is not only about making it more inclusive and more accessible for people with disabilities, but for all of us, so that we can live in a society and in a world in which people can move around and move with tranquility, in which we can establish relationships, buy some bread, or use a transport application or take a bus with tranquility, and take a walk in the square and not leave there more stressed-out because we were surrounded by several prejudices and barriers. In other words, we have a lot to advance. And so Paulinho, the importance, as you have already mentioned on, of initiatives like this, right? To finish up, I would like you to leave your message for those who have stayed here with us listening until now, and talk a little again, reinforcing, about the importance of activities like this.

 

Paulo: Well, people, it is... coming to the end, I am thinking here and my goal is to try to bring some reflection. So, if at some point in this podcast I made you, who are listening, question yourself… if I brought doubts, if I brought…l critical reflections to what has been said, then I have achieved my goal. That we be hospitable and that we let the other be whoever they want to be. We don't need to control the other. Why control the other? This way to listen and let the other be who he wants to be, who she wants to be. Once again I emphasize… [beginning of the track in the background]: that we can be perceived by our potentialities and not by this reductionism that many times is the justification for ableism. That we be anti-ableist so that we can have a society that no longer needs keep discussing about inclusion, but that is a democratic society and, as such, inclusion is inherent to this practice, to democratic attitudes. So I will stop here, I thank you for your presence, and wherever you are: Reach out! Cheers, guys.

 

Saulo: That's it folks, I just have to thank you for the opportunity. It is always a great learning experience to talk to Paulo and to be able to share this with you, who are listening. It makes this process even more incredible. Just as it was very enriching and brings, besides clarifications, many questions to me about things that I think I need to question about myself and a new look to the city, to relationships, to technology or any other barrier that may be in place. I hope that those who are listening to us will also place themselves and provoke themselves to have this critical look, as you yourself commented with us, Paulinho. Thank you very much guys, we'll stop here and that's it. Thanks!

 

[track: original beat by Saulo Vinícius - @alajerecords]

 

 

[Intro music]

 

Olga Aureliano: That's it, folks. Thank you for following our channel's updates. The script, recording, and editing are by Paulo Henrique and Saulo Vinícius, co-creators of this episode; the finalization and intro music is by Rodrigo Policarpo, and the transcription is by Beatriz Simões, with proofreading by Bruna Teixeira and English translation by Deise Monica and Matthew Medeiros. This channel is only possible due to the efforts of a great team, which together with me, makes the Portraits of Brazil with Disability Project happen: Vanessa Malta, Bruna Teixeira, Nádia Meinerz and Pamela Block. We look forward to seeing you in the next episode!

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[Into music]

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