On November 23rd, the newspaper La Tercera published the article: “Unpublished study reveals that half of the people with disabilities in Chile have children”, based on a study prepared by Núcleo Milenio DISCA, from the latest version of the National Survey on Disability and Dependency (ENDIDE). The study revealed that 47.8% of people with disabilities in Chile are mothers or fathers and live with their children. This figure is similar to the non-disabled population with children.
“Until today we did not know how many people with disabilities are mothers and fathers in Chile,” explained the director of DISCA and author of the study, Florencia Herrera, who added that “the official data on parenthood does not ask about disability and the official data on disability does not ask about the presence of children. This is a transcendental data to guide public policies regarding family and childhood”.
To read the full article, you can visit the following link.
Although access to health services is a human right, people with disabilities face several barriers in their efforts to access such services, reporting more unmet health needs, worse experience with health care services and personnel, and poorer health outcomes. Timely, accessible, affordable and good quality health services are key to the health and well-being of all people. Aiming to create an equitable health system will not only bring benefits for people with disabilities, but will also have a positive impact on the economy and society.
We need more data and more research on which to base the development of public policies, strategies and programs aimed at transforming the health system. For this reason, it is important to engage in a fruitful dialogue between the academic community, decision makers and people with disabilities and their organizations, in order to identify barriers to access and inequities in health care and move towards an inclusive health system.
For this reason, the Millennium Nucleus DISCA (Disability and Citizenship Studies), together with Fondecyt DisPar (Reproductive processes and parental experiences of people with disabilities in Chile: discrimination, adaptation and resistance), and the Universidad Diego Portales, are organizing the Seminar “Towards an equitable health system”.
Date and time: December 14, 2023 at 09:00 a.m.
Place: Auditorium of the Faculty of Social Sciences and History, Universidad Diego Portales. Ejército 333, Santiago, Chile. Floor -1 (there is an elevator)
Registration: For attendance, prior registration is required at this link.
Program
09:00 to 09:30 Welcome
09:30 to 11:00 Panel 1: Towards an equitable health system for people with disabilities.
Presenter:
Dikaios Sakellariou, Cardiff University, UK.
Pía Venturiello, University of Buenos Aires, Argentina
Pamela Molina, Executive Director, World Federation of the Deaf, Argentina
11:00 to 11:30 Coffee break
11:30 to 12:30 Panel 2: Reform of mental health legislation in Chile.
Speakers:
Pablo Marshall, lawyer and alternate director of Núcleo Milenio Disca.
Marcelo Sanhueza, Mental Health Advisory Council of the Ministry of Health.
Alejandro Guajardo, Dean of the Faculty of Medicine, USACH
12:30 to 13:30 Panel 3: Decisions, experiences and support in the reproductive stage of people with disabilities.
Speakers:
Jimena Luna, CEDETi UC, CIAPAT Chile, Fundación Vida Independiente Chile.
Comments Off on Care cooperatives in Uruguay, Argentina and Chile; a look at their hinderers and opportunities to achieve development
Points of interest:
The article presents a study on the factors that strengthen care cooperatives in Uruguay, Argentina, and Chile.
The aim of this article is to explore the experiences and perceptions of people associated with the world of care cooperatives.
Cooperatives encounter barriers related to gender equality, labor market dynamics, and welfare conditions that prevent them from following the established guidelines.
Sixteen interviews were conducted.
The findings are based on the challenges faced by care cooperatives, including those associated with gender issues, lack of experience, and the essential need for both public and private support.
This article establishes a dialogue around cooperatives in the Southern Cone of Latin America.
Notes:
The following summary was prepared by the Millennium Nucleus DISCA and is based exclusively on the publication. Therefore, it cannot be used for citations or references.
Comments Off on Teatro y artivismo anticapacitista [Theater and anti-peacetic artivism]
Points of interest:
The article presents the anticapacitic artivism in the experience of the group Compañía de Teatro Visión Imposible, composed of visually impaired people in Punta Arenas, Chile.
Artivism blends art and activism. The authors propose it as a form of resistance.
Artivism is understood as an expressive and political strategy and allows people to question the social order capacitist.
Capacitism measures the value of people based on an ideal body type. Capacitism leaves out all the bodies that are different, like people with disabilities.
Anti-capitalism values the differences in people’s minds and bodies. It is a form of fighting against capacitism.
The article shows a case study of the Theatre Company “Vision Impossible”. Focal groups and photo-ethnography were integrated. Creative preparations were also made to create a performance.
It is shown that there are strong relationships between the members of the Company. These relationships help them to recognize their identities as persons with disabilities. The members manage to recognize these identities through art.
Notes:
The following summary was made by Núcleo Milenio DISCA, and was based exclusively on the publication. Therefore, it cannot be used for citations and references.
Con amplia asistencia de público e investigadores con y sin discapacidad, el pasado 12 de octubre, se celebró el Seminario “La Representación de la discapacidad en la política y la investigación” en Valdivia.
La jornada contó con la exposición de investigaciones individuales y la realización de dos paneles temáticos, uno enfocado en la representación Disca en ciencia y otro en la política.
Con la exposición de 33 investigadores y amplia asistencia de público, Núcleo Milenio DISCA realizó el Seminario “La Representación de la discapacidad en la política y la investigación” en el Campus Isla Teja de la Universidad Austral de Chile, abriendo un espacio para el diálogo, discusión y sensibilización sobre la discapacidad en el país.
Uno de los temas centrales que se abordaron fue la participación de personas con discapacidad en investigaciones científicas, así como su actividad de investigadores. “Fue un espacio de encuentro para muchos investigadores e investigadoras en discapacidad de Chile y Latinoamérica. Fue muy interesante escuchar los avances en estudios que abordan distintos ámbitos de la discapacidad realizados tanto por investigadores con gran trayectoria, como por estudiantes recién comenzando su carrera académica (…) Realizar un seminario accesible es un desafío y creo que hemos estado a la altura”, señala Florencia Herrera, Directora de Núcleo Milenio DISCA.
Relevar la necesidad de cambiar la narrativa en torno a la discapacidad y comenzar a verla como parte de la diversidad que aporta riqueza a nuestra sociedad, han sido de las principales ideas que se mencionaron durante la jornada. Los expositores también se han detenido en los testimonios sobre las barreras y desafíos que viven las personas con discapacidad en varios ámbitos, especialmente en la política y en la ciencia.Entender dónde están y cómo funcionan estas barreras se torna imprescindible para poder desarrollar políticas que ayuden a superarlas y así las personas con discapacidad puedan participar plenamente en la sociedad.
Urgencia de la cual DISCA hace eco, volviéndose una plataforma de investigación, divulgación y sensibilización que permite sentar las bases para la transformación social. Además “(…) estos seminarios sirven como un recordatorio de que la articulación entre academia, las organizaciones y el activismo de las personas con discapacidad tiene un rol que desempeñar en la construcción de un futuro más inclusivo”apunta el Director Alterno de DISCA, Pablo Marshall.
Persons with intellectual and cognitive disabilities (hereinafter PICDs) face significant barriers when accessing health treatment and satisfying their right to enjoy the highest possible standard of health . This is worrying to the extent that these persons also experience a greater need for such treatments and have higher mortality and morbidity rates than the rest of the population. These difficulties impact access to health promotion policies and curative health treatments, and include, for example, inadequate time allocation by health care workers, discrimination, lack of reasonable adjustments or poor accessibility to premises and health systems. These barriers also affect the ability to select health care treatment and to control how it is provided. The latter affects PICDs in a particularly acute way due to a diversity of factors, which include, on the one hand, barriers associated with their impairments, such as those that affect communication, perception or memory, and, on the other hand, barriers socially constructed in their environment, which include, among others, paternalistic attitudes, lack of support from their caregivers and lack of expertise and training of health care workers, which often leads to discrimination and mistreatment.
To the extent that historically, PICDs have been subjected to regimes of legal incapacity where they are appointed a representative to make decisions for them on property and personal matters – as is the case with interdiction and guardianship in Latin America –, health legislation has relied on these institutions to determine who should make decisions regarding their health treatment. with the emergence of the debate on the need to provide informed consent (hereinafter IC) in the second half of the 20Thcentury, which reconstructs the doctor-patient relationship in terms of individual autonomy, the question has arisen about how PICDs can authorise health treatment. The default legal response, to the extent that IC appears as a personal legal act, is that if the person is under a regime of legal incapacity, the person who must provide IC as a substitute is their legal representative.
Notes:
This publication is a chapter from the book “Legal Capacity, Disability and Human Rights”
Routledge Handbook of Mental Health Law
Edited By Brendan D. Kelly, Mary Donnelly
Mental health law is a rapidly evolving area of practice and research, with growing global dimensions. This work reflects the increasing importance of this field, critically discussing key issues of controversy and debate, and providing up-to-date analysis of cutting-edge developments in Africa, Asia, Europe, the Americas, and Australia.
This is a timely moment for this book to appear. The United Nations’ Convention on the Rights of Persons with Disabilities (2006) sought to transform the landscape in which mental health law is developed and implemented. This Convention, along with other developments, has, to varying degrees, informed sweeping legislative reforms in many countries around the world. These and other developments are discussed here. Contributors come from a wide range of countries and a variety of academic backgrounds including ethics, law, philosophy, psychiatry, and psychology. Some contributions are also informed by lived experience, whether in person or as family members. The result is a rich, polyphonic, and sometimes discordant account of what mental health law is and what it might be.
The Handbook is aimed at mental health scholars and practitioners as well as students of law, human rights, disability studies, and psychiatry, and campaigners and law- and policy-makers.
Within this publication, the chapter “Argentina, Chile, Colombia, and Peru: Mental Health Law and Legal Capacity” by Pablo Marshall is included.
Notes:
This publication is a book chapter and is not free to access. Is only available for purchase through Routledge.
Comments Off on Aproximaciones feministas a la discapacidad: Relaciones de poder, emociones y posicionamiento hacia el campo [Feminist approaches to disability: power relations, emotions and positioning towards the field]
Points of interest:
The article presents a feminist approach to the field of disability, addressed from a methodological perspective.
It introduces reflective work around experience.
Grounded theory is used from a feminist paradigm and the disability perspective.
The findings in the fieldwork focus on emotions and reflexivity through the use of a logbook.
From a feminist perspective, it is hoped to produce conscious and challenging knowledge of the places of enunciation of the actors and actresses.
Notes:
The following summary was prepared by the Millennium Nucleus DISCA and is based exclusively on the publication. Therefore, it cannot be used for citations or references.
We will address the issue of disability representation in policy and research. There will also be presentations of research on disability in various topics.
The event will take place on October 12, 2023 at the Universidad Austral de Chile, Campus Isla Teja, Valdivia, Chile, in face-to-face mode.
Disability representation is a vital tool for introducing, addressing and challenging ideas about disability. We recognize that, despite its potential to inform and change perceptions, representation can also reinforce inequalities and perpetuate existing stereotypes. For this reason, an in-depth scholarly analysis of how people with disabilities and disability as a phenomenon are and can be represented is crucial.
We will seek to generate a rigorous and diverse academic dialogue about disability in general and the issue of disability representation in policy and academic research. In addition, we seek to generate a meeting space for people who do research on disability.
The seminar will have two parts: during the morning, it will be an open space where research on disability from different disciplines will be presented. During the afternoon, the particular topic of disability representation will be addressed through two discussion tables, one on political representation and the other on representation in research.
The seminar will be held at the Universidad Austral de Chile, Campus Isla Teja, Valdivia, Chile, on October 12, 2023 from 9:00 to 18:00 hrs. The Seminar will be interpreted in Chilean Sign Language (LSCh) and for attendance, prior registration is required at this link.
Program
09:00 to 09:30 Welcome
09:30 to 11:00 Present your research in 10 minutes
Room 1 and 2 simultaneous
09:30 to 11:00 Present your research in 10 minutes (Room 2)
Nelson Muñoz, University of Chile. Therapeutic itineraries of the rehabilitation process of children with disabilities and their families users of the Western Metropolitan Health Service of Santiago.
Pamela Gutiérrez, University of Chile. Inclusion of people with disabilities and the concept of human rights in Chilean health policies.
Pía Rodríguez-Garrido, University of O’Higgins. Obstetric and gynecological violence and its impact on the mental health of Chilean women with disabilities.
Andrea Tereucán, Universidad de los Lagos. Experiences of health and care in childhood and adolescence of the Autism Spectrum in Osorno, a territorial view (1990-2023).
Karina Pinto, University of Chile. Political Affections, Illness and Disability: Problematizing the biomedical model of rehabilitation from a feminist anti-empowerment perspective.
Soledad Toro and Wanda Espejo, Una ruta sin Barreras. The right to recreational sports and tourism: personal assistance as a human right.
Space for questions
09:30 to 11:00 Present your research in 10 minutes (Room 1)
Esteban Burgos, University of Concepción. The challenge of political inclusion in Chile: Barriers and Facilitators that affect the Electoral Participation of People with Disabilities.
María Paz Santos Ricartes. Economic growth of people with disabilities.
Daniella Leal, Pontificia Universidad Católica de Chile. People with Disabilities and their Participation in the Labor Market: Evidence from ENDIDE 2022.
Andrea Montecinos, Juan González and Constanza Corvalán. Pontificia Universidad Católica de Valparaíso. The new legal status in relation to the entry to school of children with disabilities.
Bárbara Suazo, University of Chile. The political from the common in organizations of the disability field: The case of Colectivo Autismo Chile between 2011 and 2019.
Francisca Higuera, Shirlia Jara, Ana Lizama, Daniela Sepúlveda and Ninosca Bravo. Catholic University of Temuco. Dissonances of inclusion with Francisca Our companion and friend.
Space for questions
11:00 to 11:30 Coffee break
11:30 to 13:00 Present your research in 10 minutes
Daniela Jaure, AVANZA Inclusion. Intellectual disability, social inclusion and quality of life. A look from those who are protagonists.
Ninosca Bravo, Catholic University of Temuco. Social representations of special education pedagogy students about intellectual disability and developmental disabilities.
Edison Calahorrano, Central University. The relational approach as a methodology for the representation of people with disabilities in scientific research.
Mauricio López, DISCA Nucleus. The power of Experts by Experience: Co-creation of knowledge in disability research.
Constanza López, University of Valparaíso. Care as a possible foundation for the production of knowledge: an approach from feminist disability studies.
Jame Rebolledo, University of Chile. Research with disability activists from Feminist Epistemologies.
Space for questions
13:00 to 14:00 Lunch (included in the Seminar)
14:00 – 15:30 Panel 1: Political Representation of Disabilities
Diana Vallejo, U. Iberoamericana Mexico City. The disca as a symbol of the transvaluation of the disabled.
Diego Solsona, U. de los Lagos. Manufactured by the State, intervened from the biopower: the case of people with disabilities in Chile.
Jaime Ramírez, U. of Chile. Analyzing the development of social mobilization of people with disabilities in Chile 15 years after the convention.
Florencia Herrera, U. Diego Portales. ‘Look at me!’: Public and digital political campaigns of people with disabilities in the socio-political crisis in Chile.
15:30 to 15:45 Coffee break
15:45 to 17:15 Panel 2: Representation of Disability in Scientific Research
Luis Vera, U. of Chile. Paola Arroyo, U. Alberto Hurtado. José Reyes, U. Academia de Humanismo Cristiano: “Disabled” teaching experiences. Reflections situated from the bodies.
Vanessa Vega and Félix González-Carrasco, Pontificia Universidad Católica de Chile. Izaskun Álvarez, U. de las Américas. Inclusive research as an engine for the transformation of practices in intellectual disability.
Valquiria Ramos, Pontificia Universidad Católica de Chile. Decision-making processes in academic journals on disability.
Carlos Araneda-Urrutia, Pontificia Universidad Católica de Chile. Where are and how do academics with disabilities inhabit the university: Contributions for a methodological discussion about the affective infrastructures of academic capacitism.
