Núcleo Disca

Disability and citizenship

Author Archives: Comunicaciones Núcleo DISCA

  1. ¡No más caridad, queremos derechos, justicia y dignidad! Las marchas anti-teletón en Chile (2011-2021)

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    The objective of this text was to analyze the process of anti-Tele-ton marches developed in Chile in the 21st century from the perspective of its protagonists. Thus, we identify some of its milestones, describe the nodes of meaning regarding disability put into play, and examine some of its social implications. For this, we start from the contributions of Disability Studies and favor a qualitative approach. We conduct a documentary anal-ysis of primary and secondary sources of the pioneering groups in this fight. The results highlight four chronological milestones and meaning: 1) 2011, where the nascent Palos de Ciego Collec-tive showed a systematic cry of struggle: “No more charity! We want rights, justice, and dignity!”, 2) 2014-2017, with the gradual spread of criticism of the Teletón and dissemination of a rights-based approach; 3) 2018, where Acción Mutante criticizes 40 years of ableism from functional dissidence; 4) 2019, when the founding song of struggle became the motto of a march called by the National Collective for Disability, mobilizing more than 10,000 people throughout the country, within the framework of the social outbreak and ending in the request for constitutional recognition of this sector of the population one year later.

     

    Note: This article was originally published in Spanish.

  2. Reivindicative occupational practices of activist with disabilities

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    Introduction: The occupational praxis of activists with disabilities in the Latin America has presented actions of revindication from historically marginalised territories.

    Objective: To explore and describe strategies used by Chilean activist with disabilities.

    Method: Qualitative design via three research techniques: a) 11 in-depth interviews; b) six group chat sessions; c) content analysis of eight social networks belonging to collectives of activists with disabilities in Chile.

    Results: Activists indicate various occupations for revindication as subjects with rights. These trajectories are exemplified with the following dimensions: 1) Interpellate full social participation: demanding justice and citizenship; 2) Showing defective bodies: public mobilisations; 3) Occupying institutional space by placing: bodies in the system.

    Conclusion: Dissident occupational practices intervene and transform the limited comprehension about what human vulnerability and fragility is capable of. This situation is mainly appreciated in the Global South.

     

    Note: This article was originally published in English.

  3. Informed Consent and Support for Decision-Making: A Critical Review of Legal Reforms in Latin America

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    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”
    • This book is not free to access.
    • This book was published in English.

  4. The Functional Model of Legal Capacity: An Analysis of the Regulation of Legal Capacity in three Common Law Jurisdictions

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    This paper introduces the developments of the functional model of legal capacity in the Common Law tradition to Spanish-speaking academic audiences. To achieve this, a brief comparison is drawn between different models to assess whether an adult lacks the necessary capacity to enter legal transactions. It is observed that, out of all these models, the functional model is the only one currently enjoying relative acceptance. For this reason, we comment on its virtues and defects. After the introductory part, this piece moves on to a study of how forensic practice in three jurisdictions that are considered examples of this legal tradition, namely England and Wales in the United Kingdom, British Columbia in Canada, and Queensland in Australia, all regulate the legal capacity of people with disabilities.

     

    Note: This article was originally published in Spanish and English.

  5. Disability in the Chilean constitutional process

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    This article provides an overview of the constitution-making process currently developing in Chile from a disability perspective, focusing particularly on the process led by the so-called ‘Constitutional Convention’. First, we describe the measures taken to include persons with disabilities in the composition of the constitutional body tasked with writing the new constitution and how persons with disabilities could participate in the construction of disability as a constitutional matter. Then, we focus on several provisions of the proposal for the new constitution of Chile elaborated by the Constitutional Convention that refer to the rights of persons with disabilities. It is argued that although the proposal drafted by the Constitutional Convention was ultimately rejected, it must not be considered irrelevant to the constitutional protection of the rights of persons with disabilities in Chile. Both for substantive and procedural reasons, the constitutional process led by the Constitutional Convention offers solid ground to advance the rights of persons with disabilities as a constitutional issue.

     

    Note: This article was originally published in English.

  6. Study of a set of reading precursors among Chilean children with Down syndrome

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    This article, published in Frontiers in Psychology, presents important findings on reading acquisition in Chilean children with Down syndrome.

    Points of interest:

    • This study explores the performance of 42 Chilean children with Down syndrome on a set of reading precursors (phonological awareness, visual recognition, vocabulary, letter knowledge, and verbal reasoning). The age of these children ranges from 6 to 11 years.
    • 23 participants attended special schools and 19 attended regular schools. The analysis led to reflection on the transformations that should be considered when designing educational programs aimed at reading instruction for children with Down syndrome.
    • The results suggest that children with Down syndrome exhibit a significant improvement in performance after the age of 7, based on the differences found among the three age groups compared in this study.
    • There is a general delay in reading precursors within the group, indicating that children with Down syndrome require even more time to strengthen these skills and, thereby, progress in the formal process of learning to read.
    • The results obtained also suggest that the reading skills of a group of Spanish-speaking children with Down syndrome are sensitive to change and improve with age.

     

    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.

  7. Politico-Epistemic Tensions Regarding Personal Assistance and Care for People with Disabilities: An Integrative Literature Review

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    Since the 1960s, the Independent Life Movement has demanded personal assistance as a right for people with disabilities to access autonomy. In turn, feminist movements have shown a special concern for the care and profile of the providers. Both postures have created tensions around the provision of personal assistance and care for people with disabilities.

    Aim: To know and analyze the scientific evidence regarding approaches to personal assistance and care for people with disabilities.

    Methods: An Integrative Literature Review using five databases: Dialnet, Scielo, PubMed, Scopus, and Web of Science. The Boolean combinations were: “Personal assistance AND disability”; “Personal assistance AND care AND disability”; “Care AND disability” in English, and “Asistencia personal AND discapacidad”; “Asistencia personal AND cuidados AND discapacidad”; “Cuidados AND discapacidad” in Spanish. A total of 31 scientific articles were obtained. A content analysis was then, with five analysis dimensions emerging.

    Results: The articles approached the positive aspects of personal assistance. Others established the need for more resources in order to not be an exclusive reality for developed countries. Profiles were made of racialized, young, migrant women as the identity behind (informal) care. From the perspective of a feminist disability care ethic, new forms of providing care are proposed, by changing the focus from individual and family responsibility, towards a social and collective focus.

    Conclusion: The evidence analyzed considers various dimensions of the epistemo-political tension between personal assistance and care. The meeting point between both perspectives is interdependence and autonomy; on the one side, for people with disabilities, and on the other, for the women profiled as the main caregivers.

     

    Note: This article was originally published in English.

  8. Are We Closing the Gap? Reforms to Legal Capacity in Latin America in Light of the Convention on the Rights of Persons with Disabilities

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    This Article examines the the reforms developed in Latin America over the last decade that have adapted domestic legislation regarding legal capacity toward the support model of the Convention on the Rights of Persons with Disabilities (CRPD). Our examination of the reforms in Costa Rica, Argentina, Peru, and Colombia focuses on the adoption process of the reforms, the main characteristics of the implemented support model, some transitional and implementation aspects of the reforms, and a critical examination of their relationship to the CRPD. Finally, this Article explores some weaknesses related to the reforms’ implementation processes.

     

    Note: This article was originally published in English.

  9. Barriers in the Access to Sexual and Reproductive Health: Experiences of women with disabilities in the far south of Chile

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    In this article published in Ex Aequo – Journal of the Portuguese Association for Women’s Studies, important findings are highlighted regarding the exercise of sexual and reproductive health rights among women with disabilities.

    Points of interest:

    • This study explores the barriers to accessing sexual and reproductive health services for women with disabilities within the public system in the Magallanes region.
    • The 15 women interviewed express low satisfaction with the quality of sexual and reproductive health services.
    • Women with disabilities report limitations caused by healthcare staff, physical environment barriers, and administrative constraints.
    • There is a double discrimination against women with disabilities in healthcare settings: they are discriminated against both for being women and for having disabilities.
    • They emphasize that their needs are not considered during interactions with healthcare personnel, and they are not allowed to make decisions independently.

     

    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.