Núcleo Disca

Disability and citizenship

Author Archives: Javier Pañella

  2. Five universities create the Disability and Citizenship Millennium Nucleus

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    A group of academics from five Chilean institutions of higher education -including Universidad San Sebastián- joined forces to form the DISCA Disability and Citizenship Nucleus to investigate the barriers that prevent people with disabilities from fully exercising their citizenship. An innovative instance, which includes for the first time in its bosom people with diverse disabilities to contribute to the creation of new inclusive public policies.

    “Just because I don’t go to every meeting doesn’t mean I don’t want to be invited. I may go to one out of 15 invitations, but I still want to be considered. That gives me peace of mind and I feel that I still exist, although it stresses me out to be able to say that I can’t, that I don’t want to or don’t have the strength to go,” Mauricio López, television screenwriter and film director, wrote on his Instagram account some time ago.

    Although Mauricio is 36 years old, only three years ago he was diagnosed with autism spectrum with high abilities, a double exceptionality in the world of neurodiversity, since his disability is far from the stereotypes rooted in society.

    The professional says that his was a long process, which began in his childhood, after presenting a large number of traits that were different from the rest, such as the late development of oral language. He had to go through the observation of several doctors, undergoing intelligence tests at that time, which sought to check if he had an intellectual disability.

    “For the doctors, I was too intelligent to be autistic, which is a terrible offense for people with disabilities,” she recalls, looking back on a process that took three decades before she was able to give a correct name to her feelings. “For me, the identification was a relief,” he says.

    Mauricio has always felt the weight of constant questioning about his situation, especially in his social or personal relationships, having to prove that he is autistic in social, work and even medical environments. López relates this to the fact that the image is still maintained that the disability is only physical, and that it must be visible to the eyes of others. Because if not, such condition does not exist, it is not credible.

    His process led him to study the subject in depth and dedicate himself to activism, using social networks to talk about the diversity that exists in the world of disability.

    For this reason, he was contacted by Dr. Elena Rotarou, researcher at the Faculty of Medicine and Science of the U. San Sebastian, to participate in the initiative Millennium Nucleus DISCA – Disability and Citizenship, a project that was awarded to a team of academics from five universities to the National Agency for Research and Development (ANID) to raise a new core research focused on this issue.

    Mauricio loved the idea, who affirms that “although progress has been made in the discussion and rights for people with disabilities, there is still a long way to go. Above all, we are the ones who can discuss and contribute from our reality in the decision making process in order to be equal citizens”.

    “There is a lack of concrete data. If you don’t know the reality, you can’t develop policies to change and improve things,” says Dr. Rotarou, who has spent nearly a decade researching inequality and poverty in Chile, focusing on disadvantaged groups and people with disabilities.

    According to recent figures, 16.7% of the population in Chile has some kind of disability, negatively impacting income levels, labor participation, education, wellbeing and citizen and political participation.

    Disability and Citizenship

    The DISCA Millennium Nucleus – Disability and Citizenship is a project that, for three years, will seek to delve deeper into a topic that has been little studied by academia. The project will expand knowledge and advance towards the protection of the rights and improvement of the welfare of people with disabilities.

    The initiative is led by Dr. Florencia Herrera, researcher at U. Diego Portales, a visually impaired person, marking a milestone in research. They are joined by academics Pablo Marshall, from U. Austral; Marcela Tenorio, from U. de los Andes; and Juan Andrés Pino from U. de O Higgins.

    The DISCA Nucleus will have four lines of research: “Political Participation”, “Sexuality and Reproduction”, “Access to Health” and “Inclusive Methodology”, under a mixed methodology research, from surveys to focus groups distributed by several regions of the country, types of disability, genders and ages.

    “Many times this type of projects do not involve people with disabilities”, emphasizes the USS researcher, so the Millennium Nucleus, apart from being led by Dr. Herrera, will have a committee of six people with disabilities, called experts by experience. They will be involved from the beginning in the project, a necessary look, by opening a pioneering space that promotes and articulates studies on disability in Chile and Latin America.

    Towards new public policies

    The central purpose of the DISCA Nucleus is to generate knowledge to inform those responsible for public policies on the subject, with the goal of protecting the rights of people with disabilities and promoting their participation in all areas of social, economic and political life. The initiative is already being seen as an important step forward by institutions dealing with the issue.

    Macarena Rivas, deputy director of social and community services at Teleton, told Formando para crear that “the DISCA Nucleus is an important project, since people with disabilities require an in-depth look at their life trajectories and needs, but also from the social construction of disability”.

    The symbol institution in the country in support and visibility of disability also recognizes that there are many needs that need to be addressed. “The needs of the blind, deaf or those with autism spectrum conditions, psychic, intellectual, sensory, will have a space. They are actors of our society, from which needs must be integrated according to the particular situations of the groups mentioned”.

    On the governmental side, Daniel Concha, national director of the National Disability Service (Senadis), considers that the formation of the DISCA Nucleus “is undoubtedly a good sign, which consolidates the academic work that universities are developing in favor of the social inclusion of people with disabilities”.

    Concha recognizes that this initiative opens a way to talk to those who are affected in the decisions. “It is necessary that the different actors and decision-makers in society, both in the public and private spheres and also in civil society, develop joint actions that allow us to generate or improve the public policies on accessibility that our country requires,” he explains.

    The authority considers that this academic effort will raise new ways of looking at this reality, complemented by the government’s priorities to create a “National Universal Accessibility Plan”, a roadmap on accessibility for the next 10 years for the country, which -according to the director of Senadis- “will become a State policy”, and also mentions the recent announcement of the creation of the National Care System, which recognizes those who exercise the role of caring for people with disabilities, raising the principles of care as a social and human right.

    In the eyes of Dr. Elena Rotarou, who has reviewed the situation in Latin American countries, she describes that “Chile has implemented several policies of equal employment opportunities, preferential attention, among other decrees that differentiate it from the rest of the region.

    However, it is still common that the voices of people with disabilities are not included in decision making”.

    Macarena Rivas, from Teletón, adds that “when we talk about people with disabilities we are talking about the perspective of rights. The function of the policy is to make these rights more and more evident and legitimized per se”.

    The researchers of the DISCA Millennium Nucleus hope to make the final arrangements for the project to begin this year, and thus gather the territorial and experiential evidence that currently exists, becoming an international reference on how universities unite and get involved in contingent issues of society to respond from research and academia.

    See the news in its original publication in La Tercera Credits: Ricardo Olave, 31 JAN 2023