Pablo Lecuona

Ashoka Fellow
Illustration of a person's face depicting a fellow
Argentina
Fellow since 2019
Individual Pablo Lecuona
This description of Pablo Lecuona's work was prepared when Pablo Lecuona was elected to the Ashoka Fellowship in 2019 .

Introduction

Pablo has created a global community of visually impaired readers which, by using innovative and free tools supported by technology, is replacing the paradigm of dependency for the one of autonomy of blind people.

The New Idea

Pablo believes that access to information and reading are essential pillars for personal development and autonomy throughout the life of visually impaired people. With these premises in mind, he founded the organization called Tiflonexos, which provides free access to recreational and educational books, adapted for users from Argentina and from other Spanish-speaking countries throughout the world, with the purpose of promoting the development of visually impaired people’s autonomy.

Tiflonexos, the virtual library with more than 9000 users from different parts of the world, is at the same time a virtual community which promotes the development of projects, the empowerment of visually impaired people and the training of new leaderships. Different to other accessible libraries, Tiflonexos not only provides free and accessible access to reading material but also creates a community of people which promotes the development of skills for an autonomous life based on access to information, peer support, access to adaptive technologies, and the development of new cultural, educational, recreational and empowering experiences. Tiflonexos began by an exchange of books between users and became the regional reference organization in terms of access to materials for visually impaired people, and they are consulted by the Ministries of Education from several countries within Latin America.

The Problem

It is estimated that in the world there are 285 million visually impaired people, 90% of which live in developing countries. In Latin America, this number ranges between 6 to 10 million people approximately, although there is no accurate information. Specifically, in Argentina 20% of homes have a family member with some type of disability.

According to information provided by ONCE, the Spanish organization specialized in disability, 80% of the information necessary for the development of every-day life involves the sense of sight. Blindness or visual problems bring about difficulties in every-day activities and in the involvement and socialization of people: school, work, leisure, development of citizenship. Data released by the World Blind Union indicates that, even in more developed countries, only 5% of published books are available in accessible formats. This number is alarmingly lower in developing countries. It is estimated that, in Latin America, that number is not even close to 1%. For blind people or people with visual problems, the lack of adapted books implies difficulties to access educational material in school and university, together with difficulties to access recreational materials and all the information people can access through sight.

The root of the problem is mainly the disadvantages to which visually impaired people are exposed. On the one hand, there is education. The educational system in Argentina is decentralized, that is, the selection of school material is defined by each teacher. And for blind people, this turns out to be a problem since there is not much availability of school materials and it turns out to be very expensive for editorials that choose not to have material in an accessible format. From the Government there was no further concern for this problem than the creation of an editorial which, until the 80’s, produced braille school textbooks. However, due to the time of production, only editions of previous years were available without any options to choose from, which made blind students not able to have the same book as their classmates at school.

Thus, from this arises the problem of access to literature and information that visually impaired people have. If they do not have access to books for their education, new obstacles are added to the disadvantages resulting from their disability: not being able to get an education under equal conditions leads to lower levels of education, less opportunities to access quality jobs, lower economic development and, ultimately, a higher level of social exclusion.

In fact, according to data provided by the National Rehabilitation Service, 80% of visually impaired people do not have a job, and that explains, in part, the difficulties they have for developing a full life. Difficulties for autonomy are strengthened by overprotective family environments which generate a vicious cycle and a loss of the self-confidence of the people taking them in their homes.

And thus, just as people with disabilities in general and, particularly, visually impaired people are not visible, they do not have easy access to information and guidance about their own possibilities. This also implies a global overprotective upbringing environment that leads to a lack of self-reliance capacities and, therefore, to self-limitation. Even though there exist different types of services that seek to attend the needs of this population together with some rights and tools to help with their inclusion, a great majority of visually impaired people do not access information. This situation is worsened in the province, where there are less school and development opportunities, and these are notably less for impaired people. This, together with social prejudice and difficulties that arise from the moment the person becomes impaired, makes a lot of people with disabilities to stop having a social life, working, studying and, thus, not to fulfill their development.

Even though the approval of the Convention on the Rights of Persons with Disabilities introduced improvements on the field, there is still a huge lack of public policies supporting education, health and specific multiple needs.

The Strategy

Pablo’s experience with visual disability has been like a compass that guided his path as an entrepreneur and the design of solutions which fit the users’ needs. Since he was a child, he experienced difficulties to access educational and recreational materials, which led him to create Tiflonexos to give an answer to this great unattended need.

Through Tiflonexos, Pablo created a global network of more than 9000 users from different places who access the database of adapted books and who also participate in the development of the Library (Tiflolibros, which turned out to be the first project of the organization), the addition of new accessible books, and in other projects related to autonomy. With time, Tiflonexos became a reference organization regarding adapted reading material focusing on the user, their contexts, needs and possibilities. Daily, an average of 420 books are downloaded, which makes study and access to information easier for thousands of users.

Pablo resorts to the development of a network as the core of his work, and all his advocacy work provided him with a lot of knowledge and many contacts in the area. On the one hand, through the library which puts together resources from each person and institutions and on the other hand, through the network which is the place of meeting and exchange between visually disabled people who share experiences which empower them and strengthens their autonomy.

Users from any part of the world present a disability certificate or similar documentation, and this allows them to enter the Tiflonexos community for free. Each member is enabled to request the books they need and to upload accessible works. For this to be possible, Pablo has established a partnership with the ABC Accessible Books Consortium, which automatically allows books recently incorporated to Tiflolibros to be also available for cross-border exchange in that global platform.

The lack of public policies in relation to this (and the large size of the Argentine territory) makes access to opportunities notably lower in the provinces. Therefore, Tiflonexos developed a program of access to literature called Access Points, which facilitates the creation of entry spaces to the virtual library and to all the platforms that Tiflonexos offer, such as scholarships, training, job offers, and debate lists from users. Today there are 11 Access Points in different provinces, managed in collaboration with local organizations trained by Tiflonexos. Those spaces also provide internet access, computers and accessible software based on existing local resources and what local users need. Tiflonexos does not understand accessibility only in terms of disability, but it also considers the age of the users, their level of technology usage and economic aspects, in order to minimize obstacles to access.

As an example, there is the joint work with the Editora nacional Braille, (National Braille Editorial), Centro de Copistas de Santa Rosa de Lima (the Copy Center of Santa Rosa of Lima), and Biblioteca Argentina para Ciegos (the Argentine Library for the Blind), for the development of an Accessible Reading Resources Kit which is being distributed among schools and libraries all over the country. It is important to highlight that all adapted materials produced by Tiflonexos cost 10 times less than the average price. Apart from individuals, 400 organizations related to the disability with which they make projects and opportunities for users are subscribed. Regionally the network also extends throughout Latin America with organizations such as the Santo Domingo Resource Center, the National Blind Union of Uruguay, the National Library of Venezuela, and the National Library of Peru and the Dominican Republic.

In order to facilitate the incorporation of new materials and to spread the importance of accessible reading, Pablo entered into agreements with 40 editorials which he trains on the key steps of the accessibility process such as design, writing and format. Aware that agreements with editorials are not enough to expand the access to books, Pablo carried out an advocacy work which began with a bill in Argentina which releases people with reading disabilities from copyright payments and went on by leading an international advocacy process to the same end.

In collaboration with the World Blind Union Pablo worked with a campaign team on political defense and technical advice to the governments of the region, promoting negotiation in the World Intellectual Property Organization of an International Treaty that eliminates legal barriers to the production and distribution of works in formats accessible globally. Pablo participated representing the Blind people from the region in the different committees in which the treaty was negotiated , achieving that in 2013 a diplomatic conference was convened in Marrakech (Morocco) to negotiate the text and adopt the treaty that was therefore called the Treaty of Marrakech.

He worked in Latin American and at a global level to get different countries to ratify and enforce the treaty (in Argentina, this took place in 2015). In this sense, together with the Unión Latinoamericana de Ciegos (Latin-American Union for the Blind), he visited several countries of the region where, in cooperation with local organizations, they gathered with different government officials involved in the matter to achieve their goal.

Every two years, Tiflonexos organizes user meetings called Tifloencuentros in which they create visibility for this disability, conferences and networks about meetings as well as sport and cultural activities. The last 2 editions were designed and led by Mexican and Colombian users, and an average of 70 people from different countries participated. Participants are encouraged to engage in activities that they never imagined themselves doing such as kayaking, trekking, paragliding, museum tours, etc. These activities have a strong impact in the life of people and in their close environment who, in many cases, watch their family members get out of the house for the first time without help. These meetings have also an impact on tourist agencies that receive a large group of blind people and, in some cases, this enabled the creation of an adapted service for people with disabilities.

The great experience that Tiflonexos has in the creation of the accessible educational resources and network strategies to optimize resources has been acknowledged by other countries, and Pablo was invited for training teams during the last two years by the Ministries of Education from Uruguay, Paraguay and Chile.

The organization is supported by projects linked to the accessibility of materials, trainings within companies and organizations, and they count with a little production unit of accessible material in all types of formats. Recently, audio description was included and the organization began to work with audiovisual producers.

The Person

Pablo was born in a family of professionals. His father, an engineer; his mother, a Mathematics professor. Despite having an early diagnosis, he gradually lost his sight during his childhood. He was raised with his sisters in a family of readers. There were not any upheavals during his childhood, and he counted with the support of his parents, who looked for the appropriate help when it was necessary.

Like Pablo, his parents had to adjust to the new reality of his son and they were able to accompany him without passing any fears onto him and believing in his autonomy. He went to school to a regular education establishment, but he had the opportunity to count with a special education teacher, which was one of the first cases of this type of experiences at that time. Pablo always counted with the help of his teachers, although in fifth grade he had a quite unsupportive teacher, something that forced him to develop alternate strategies with his classmates to have access to notes on the blackboard and to keep up with his classes. This situation turned out to be a great lesson on the importance of the support of the environment for his development which, later, guided him in all his projects.

Despite the collaboration he got, access to education materials always posed a challenge for Pablo. During his school time, printed braille books arrived after 6 months from the beginning of the school year and they were always out-of-date in comparison with those of his classmates. While he was in secondary school, Pablo started to participate in the Argentine Library for the Blind (BAC, for its Spanish acronym) which, by then, had a young and blind director who managed to empower young people who contacted the organization. There, Pablo led several projects and took his first steps as a young leader. Close to the year 2000, with the massive use of internet and assistive technologies, he saw as a great opportunity to use internet to exchange accessible materials and to create a project within BAC to that purpose. Upon the negative response of the Advisory Board of that time to continue with the project, Pablo encouraged the creation of a group for the exchange of books. This initiative was very successful and was very appreciated by the group and, with time, it became Tiflolibros, which began as a small project with only a few titles. To face the demand of other visually disabled people and the lack of response from the government or other organizations, Pablo created the project within a social organization focusing on the access to information and development of autonomy.

His leadership skills led Pablo to occupy the role as the Latin America representative for the Right to Read campaign from the World Blind Union. Pablo is a well-known referent in the region within the subject of rights of the blind people and access to readings for governments and organizations of the region, such as Ministries of Education from Uruguay, Paraguay and Chile, and WIPO, with whom he supported the Marrakesh Treaty.

For his work with Tiflonexos, Pablo received many national and international awards, such as the acknowledgement of the Accessible Books Consortium in 2017, the award Innovadores de América in 2016, the UNESCO/Emir Jaber Al Ahmad Al Jaber Al Sabah Prize for Digital Empowerment of Persons with Disabilities, also in 2016, and the The Fundación Vidanta Award for his outstanding and original work in Latin America and the Caribbean to reduce poverty, inequality and to tackle discrimination, among others.