We analyzed short stories where disabled parents share how they are treated by health personnel (for example, doctors and nurses).
Disabled parents say that health personnel do not see them and do not believe they can do things.
In these stories, health personnel pay more attention to the parent’s disability than to the child who needs medical attention.
Health personnel understand disability as something that limits a person. This can make it difficult for parents and children to get the help they need.
Disabled parents look for ways to deal with the way health personnel treat them and to ensure that their children receive care from the health staff.
Notes:
This summary was made by Núcleo Milenio DISCA, and was based exclusively on the publication. It cannot be used for citations and references.
The objective of this article is to analyze the narratives of medical professionals in the city of Rancagua (capital of the O’Higgins Region, central Chile), about the reproductive health/motherhood of Haitian women.
Haitian women face more obstacles to receiving good medical care: there are no translators, there is a lack of information, and cultural differences are not respected.
Being a mother and a migrant is difficult. Many times, these women are judged for not fitting the image of a “good mother” according to what is expected in Chile. This puts them in an unfair position and their way of interacting with their babies is questioned.
Doctors in Rancagua say that Haitian women do not show enough affection to their babies. This was called “lack of attachment” in the research.
Doctors compare Haitian mothers with other migrant mothers and say that they do not care for their children in the same way. This creates mistrust toward them.
The study shows that Haitian women are discriminated against for being Black. Medical staff see them as different, inferior, or “less civilized.”
Racist ideas influence how these women are treated. Negative images are built that affect their access to healthcare and that of their children.
More births, same problems. Although the number of Haitian women giving birth in Rancagua has increased, the health system has not changed or adapted to serve them better.
Importance of the intercultural approach. The study says a change is necessary. Health care needs to understand and respect different cultures and ways of being a mother.
Notes:
The following summary was prepared by Núcleo Milenio DISCA and is based exclusively on the original publication. Therefore, it should not be used for citations or references.
This article was originally published in English and Spanish.
En el Salón Montt Varas del Palacio La Moneda se celebró el inicio del trabajo de la Mesa Técnica para la Promoción de la Inclusión y Participación de Personas con Discapacidad en Educación Superior, hito que se enmarca en el convenio de colaboración firmado el año pasado entre el Servicio Nacional de la Discapacidad, SENADIS, y la Subsecretaría de Educación Superior del Ministerio de Educación.
En la instancia participaron autoridades de Gobierno como Javiera Toro, ministra de Desarrollo Social y Familia; el subsecretario de Educación Superior, Víctor Orellana; el director nacional del SENADIS, Daniel Concha; rectoras y rectores de instituciones de educación superior, parlamentarias de la Comisión de Educación de la Cámara de Diputados y Diputadas, e integrantes de comunidades educativas vinculadas a temas de inclusión y discapacidad.
La mesa de trabajo estará compuesta por equipos técnicos de la Subsecretaría de Educación Superior, SENADIS, DEMRE y representantes de instituciones de educación superior, además de organizaciones de estudiantes con discapacidad y de la sociedad civil. El objetivo del espacio será revisar y proponer políticas públicas enfocadas en la promoción de la inclusión y participación de personas con discapacidad en la educación superior, y sesionará mensualmente. En mayo de 2025 la mesa presentará un informe con orientaciones de política pública.
La ministra de Desarrollo Social y Familia, Javiera Toro, manifestó que “como Gobierno nos hemos trazado desafíos exigentes, con la convicción de implementar un sistema de educación pública, gratuita y de calidad. Esta mesa técnica es señal de esto. La educación superior de las personas con discapacidad es un derecho fundamental, cuyas condiciones de ejercicio deben ser garantizadas por el Estado”.
El subsecretario de Educación Superior, Víctor Orellana, señaló que “la inclusión es parte fundamental del derecho a la educación, no sólo para reconocer los talentos de las y los estudiantes, sino también para que el sistema educativo y las demás personas aprendan de quienes antes estaban fuera. Hemos hecho importantes avances en este sentido, pero todavía queda un camino importante por delante para que todas y todos los estudiantes tengan posibilidad de acceder a una educación superior con accesibilidad universal”.
El director nacional del Servicio Nacional de la Discapacidad, Daniel Concha, manifestó que “la educación es un pilar fundamental para las personas con discapacidad, para su desarrollo en cada etapa vital y el ejercicio de su autonomía. Desde SENADIS queremos darle a la educación inclusiva la mirada de curso de vida, que se ocupe del ingreso, la permanencia y el egreso de los estudiantes y las estudiantes, estableciendo un nexo posible y viable con la inclusión laboral. El convenio que hemos suscrito con la Subsecretaría de Educación Superior y el inicio de esta mesa técnica nos sitúa en el camino de este desafío para la educación inclusiva”.
En tanto, María Ignacia Fuentes, estudiante de Psicología y beneficiaria del Programa de Recursos de Apoyos para Estudiantes con discapacidad de Educación Superior del SENADIS, quien es persona sorda y, actualmente, realiza su práctica profesional en el Centro de Apoyo a Personas Sordas, durante la actividad expresó a través de lengua de señas chilena su mensaje: “Hola, hola… Esta es mi seña, mi nombre es María Ignacia, estoy estudiando psicología clínica, ya son siete años en la Universidad Católica, y quiero agradecer a SENADIS y también a mi Universidad Católica por todo el apoyo. Si no hay SENADIS, si no hay intérprete… cómo puedo aprender, cómo puedo entender a los profesores. Por eso quiero agradecer a la universidad los apoyos, los acompañamientos, los apuntes, la lectura fácil para que pueda entender mejor. Por ejemplo, si no hay apuntes, si no hay ayuda, cómo lo puedo hacer. No puedo mirar (a la intérprete) y leer a la vez. Muchas gracias de verdad por el apoyo. Ya me falta poquito para finalizar”, señaló la estudiante de Psicología, quien ha contado con el servicio de intérprete en lengua de señas chilena, permitiéndole el acceso a sus estudios e información durante su carrera.
The COVID-19 pandemic highlighted and deepened gender inequalities in academia, especially affecting women scholars. This context led to the creation of the Feminist Network of the Social Sciences in Chile.
The Feminist Network of the Social Sciences aims to promote a feminist and dignified academia, centered on gender equality as a fundamental human right and as a core principle in the production and access to knowledge.
The research is based on self-training activities, critical reflection, and collective discussion carried out by this Network between the second half of 2021 and the first half of 2022, following a collaborative feminist approach.
Strategies are proposed to promote a decentralized, decolonial, and feminist academia, structured around four key pillars:
Equity and justice in the production of knowledge;
Dignified working conditions;
Work environments free of harassment;
Democratization of access to knowledge.
These strategies may have practical applications, such as use by academic institutions seeking structural change, as pedagogical material in gender-focused social science courses, or as a tool for collective reflection to foster new inclusive dynamics.
Although the focus is on women in academia, the proposals are recognized as relevant for other marginalized groups (e.g., based on class, ethnicity, territory, or disability). The article is presented as an open contribution to the academic community, aimed at promoting structural change through concrete practices.
Notes:
The following summary was prepared by Núcleo Milenio DISCA and is based exclusively on the original publication. Therefore, it should not be used for citations or references.
Between 2015 and 2023, the number of students with autism enrolled in the School Integration Program (PIE) in Chile increased by over 1,000%, revealing greater detection but also significant challenges for the inclusive education system
There are no clear records of children under the age of five with disabilities, which hinders the design of early and adequate public policies and intervention strategies.
There is weak interconnection between public institutions. The lack of coordination and clarity on which institution administers and manages records creates obstacles to accessing reliable data and developing evidence-based legislation.
The voluntary nature of the National Disability Registry (RND) and the lack of strategies to promote its use—such as guaranteeing anonymity and access to benefits—contribute to under-registration, particularly in early childhood.
Effective educational inclusion must begin in early childhood through early detection and intervention, as the first years are critical for development. This requires political will, resource mobilization, and a multisectoral approach.
Notes:
The following summary was prepared by Núcleo Milenio DISCA and is based exclusively on the original publication. Therefore, it should not be used for citations or references.
With the presence of attendees from different parts of the country, Núcleo DISCA held the Seminar “Towards an equitable health system for people with disabilities”.
We counted with the presentations of 10 researchers in disability, including the presence of international specialists such as Dikaios Sakellariou, Pia Venturiello, Pamela Molina and Beatriz Miranda.
With the collaboration of the Fondecyt DisPar project (Reproductive processes and parental experiences of people with disabilities in Chile: discrimination, adaptation and resistance) and the Universidad Diego Portales, last December 14 – in the Auditorium of the Faculty of Social Sciences and History UDP – was held the seminar “Towards an equitable health system for people with disabilities” coordinated by the DISCA Core Team and with the special support of the Principal Researcher of the organization, Elena Rotarou.
With three panels during the day and the presence of people who had not participated in previous activities, we celebrated diversity and research in different segments. First, we opened with the panel that gave the Seminar its name, with the participation of Dikaios Sakellariou from Cardiff University, United Kingdom; Pía Venturiello, from the University of Buenos Aires and Pamela Molina, Executive Director of the World Federation of the Deaf.
Then, the panel “Reform of mental health legislation in Chile” was held with the participation of the lawyer and alternate director of DISCA, Pablo Marshall, Marcelo Sanhueza from the Ministry of Health and Alejandro Guajardo, Dean of the Faculty of Medical Sciences of the University of Santiago de Chile.
At the end of the activity we celebrated the panel called “Decisions, experiences and support in the reproductive stage of people with disabilities” with the presence of Jimena Luna, Project Coordinator at CEDETi UC and CIAPAT Chile, Andrea Yupanqui from the University of Magallanes, Beatriz Miranda, Coordinator of the Program of critical studies of “disability” and Melissa Hichins from Reprodis.
In this sense, we highlight “the quality of the presentations (which) was of a very high level and we were able to learn about national experiences and from different parts of the world regarding access to health care for people with disabilities (…) which allowed us to learn about other realities, allowing us to ask new questions about the barriers and support that exist in Chile. In addition, we are proud that we were able to have people with disabilities on all the panels. This allows us to continue advancing in our seal: that all these spaces are from people with disabilities and with people with disabilities”, says the team of Núcleo DISCA.
With the realization of this event, we see ourselves closer to the deaf community by having Carmen Figueroa, expert by experience of Núcleo DISCA who officiated as master of ceremonies. In addition, “Pamela Molina, from the World Federation of the Deaf, presented the work they have been doing in different communities; we have interpreters in Chilean sign language and with the attendance of deaf people in the activity. This makes us very happy and challenges us to continue advancing to reach all people with disabilities.
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.
