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The temporalities of supported decision-making by people with cognitive disability

WIESEL, Ilan
SMITH, Elizabeth
BIGBY, Christine
THEN, Shih-Ning
DOUGLAS, Jacinta
CARNEY, Terry
2020

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In many societies, people with cognitive disability have been pre- sumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geo- graphical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision- making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.

Introduction: disability, partnership, and family across time and space

VIKSTRÖM, Lotta
SHAH, Sonali
JANSSENS, Angélique
2020

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Notions of family life and romantic partnership, like notions of disability, have been culturally constructed and socially produced over historical time, and our understandings of these notions are being continually challenged and re-negotiated across time and space. Policies, institutions, and cultural practices across the globe have brought about changes to the construction of the family and to the rights and inclusion of disabled people in private and public life. This special issue brings together a collection of studies from different countries and time periods to explore the interplay between disability, romantic partnerships, and family life across the individual lifetime and between generations. With this interdisciplinary collection, we seek to merge disability research and research on family and partnerships through a life course lens. This offers unique insights and opportunities to interconnect his- torical and cultural location and changing social institutions with individual and family experiences. This introduction presents the eight studies in the collection and discusses them within a life course frame that views disabled people’s roles as partners, spouses, and members of a family. In so doing, it engages in an analysis of (dis)similarities concerning how family dynamics, romantic relationships, and disability have developed over time and in different spaces.

Report of the Special Rapporteur on the rights of persons with disabilities (theme: the right of persons with disabilities to social protection)

DEVANDAS-AGUILAR, Catalina
August 2015

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'In the present report, the Special Rapporteur, Catalina Devandas-Aguilar, provides a study focusing on disability-inclusive social protection as a prerequisite for the universalization of social protection. She stresses that social protection is fundamental for achieving the social inclusion and active participation of persons with disabilities, and promoting their active citizenship. She also argues that to achieve disability-inclusive social protection, States must move away from traditional disability-welfare approaches towards embracing the innovative rights based model'

Training CBR Personnel in South Africa to contribute to the Empowerment of Persons with Disabilities

RULE, S
2013

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Purpose: Recent conceptualisations of community based rehabilitation include empowerment of persons with disabilities as a key activity. This article reports on a study which explored the training of mid-level CBR workers in South Africa, with a specific focus on the ability of the course participants to address the oppression and empowerment of persons with disabilities.

 

Method: Over a three-year period, one cycle of action research was conducted in a non-government organisation that conducts mid-level CBR training in South Africa. Data collection methods included in-depth interviews with staff, students and past graduates of the course, document analysis, participatory rural appraisal techniques and two focus group discussions with the students’ clients.

 

Results: Personnel, who had been trained in CBR before the year 2003, were found to have some difficulty in explaining the social model of disability and the oppression of persons with disabilities at a cultural and structural level. It was noted that after changes were implemented in the CBR course, the students had an orientation to working with, rather than for, persons with disabilities. They began to understand the complexities of empowerment and also engaged in social action to address the oppression of persons with disabilities.

 

Conclusions: The CBR Guidelines require a new skill-mix in mid-level CBR personnel. This study illustrates a possible training approach which can contribute to the development of these skills.

AFRO barometer : a comparative series of national public attitude surveys on democracy, markets and civil society in Africa

Institute for Democracy in South Africa (IDASA)
Center for Democracy and Development, (CDD-Ghana)
Michigan State University (MSU)

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Afrobarometer is a state-of-the-art research survey that measures the social, political and economic atmosphere in Africa. Afrobarometer surveys are conducted in more than a dozen countries. Because there are a standard set of questions, countries can be systematically compared and, ultimately, trends in public attitudes can be tracked over time. Each survey collects data about individual attitudes and behavior. Surveys have been done on democracy, governance, livelihoods, macro-economics and markets, social capital, crime, participation and national identity

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