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Normality and disability: intersections among norms, law, and culture

GOGGIN, Gerald
STEELE, Linda
CADWALLADER, Jessica
April 2017

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The central aim of this anthology of papers is to consider the place of law in political, social, scientific and biomedical developments relating to disability and other categories of ‘abnormality’. The papers consider how categories of abnormality relate to the privileged and frequently unmarked position of ‘normality’ and how legal interventions in abnormality relate to existing normative designations in the dominant cultural imaginary. This collection of papers has a range of disciplinary approaches

Paper titles:

  • Fit or fitting in: deciding against normal when reproducing the future
  • Eccentricity: the case for undermining legal categories of disability and normalcy
  • Eugenics and the normal body: the role of visual images and intelligence testing in framing the treatment of people with disabilities in the early twentieth century
  • The construction of access: the eugenic precedent of the Americans with Disabilities Act
  • Disability and torture: exception, epistemology and ‘black sites’
  • Mental capacity and states of exception: revisiting disability law with Giorgio Agamben
  • Not just language: an analysis of discursive constructions of disability in sentencing remarks
  • Policing normalcy: sexual violence against women offenders with disability
  • ‘The government is the cause of the disease and we are stuck with the symptoms’: deinstitutionalisation, mental health advocacy and police shootings in 1990s Victoria
  • Disruptive, dangerous and disturbing: the ‘challenge’ of behaviour in the construction of normalcy and vulnerability
  • Making the abject: problem-solving courts, addiction, mental illness and impairment
  • Cripwashing: the abortion debates at the crossroads of gender and disability in the Spanish media
  • ‘Figurehead’ hate crime cases: developing a framework for understanding and exposing the ‘problem’ with ‘disability’

Continuum 

Journal of Media & Cultural Studies, Vol.31, No.3, pp. 337-340

http://dx.doi.org/10.1080/10304312.2017.1275077

Exploring structural violence in the context of disability and poverty in Zimbabwe

MUDEREDZI, Jennifer T.
EIDE, Arne H.
BRAATHEN, Stine H.
STRAY-PEDERSEN, Babill
2017

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Background: While it is widely assumed that disability, poverty and health are closely linked, research falls short of fully understanding the link. One approach to analysing the links between disability and poverty is through the concept of structural violence, referring to social structures that contribute to the impoverishment of individuals or communities. These structures can be political, ecological, legal and economic, among others.


Objective: To explore structural violence and how it affects families of children with cerebral palsy among the Tonga ethnic group living in poor rural communities of Binga in Zimbabwe.


Method: This is a longitudinal, qualitative and ethnographic study. Data were collected over a period of eight years from 2005 to 2013. Data collection techniques were in-depth interviews, participant observation and focus group discussions. Purposive sampling was used to recruit 53 informants.


Results: Structural violence was noted through four themes: internal displacement and development, food and politics, water and sanitation, and social services. Poverty was noted in the form of unemployment, lack of education, healthcare, food and shelter. The concept of structural violence inflicted social suffering on the informants. Politics played a major role in activities such as food withdrawal, lack of water, development and allocation of local resources to ‘the people of the city’, leaving the informants struggling with care.

 

Conclusion: Political and economic forces have structured risks and created a situation of extreme human suffering. The capabilities approach brings out the challenges associated with cerebral palsy in the context of development challenges.

Evaluation of disability-inclusive development at UNDP

INDEPENDENT EVALUATION OFFICE OF THE UNITED NATIONS DEVELOPMENT PROGRAM
March 2017

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The Independent Evaluation Office (IEO) presents its evaluation of disability-inclusive development at the United Nations Development Programme (UNDP). This work was carried out in 2016 and analyses UNDP’s contribution to disability-inclusive development during the period 2008-2016, which corresponds to the current and past UNDP strategic plans, and to the period within which the UN Convention on the Rights of Persons with Disabilities has been in force. The work of UNDP was considered through the four key principles of the CRPD, namely nondiscrimination, participation and inclusion, accessibility and accountability. Eleven country office visits were made and 337 people interviewed. Key findings (24) are provided, conclusions made and future strategic planning put forward.

 

Report available in summary (32 p) or in full. Video also available (51 min).

Human rights and disability: A manual for national human rights institutions

CROWTHER, Neil
QUINN, Gerard
REKAS, Abigail
March 2017

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(Updated Dec 2018)

This Manual is designed to provide practical guidance for national human rights institutions (NHRIs) that are actively working to advance the human rights of persons with disabilities, as well as those NHRIs that are seeking to strengthen their efforts in this area. This Manual provides practical guidance and recommendations about how the role and functions of NHRIs can be directed to provide better protection for persons with disabilities, to promote greater awareness and respect for their rights, and to monitor the progress made and obstacles encountered in advancing their rights.

There are three parts to the manual.

  • Part I: The concepts - the human rights framing of disability
  • Part II: The law - international human rights law and disability (CRPD and others)
  • Part III: The practice - what NHRIs can do to contribute to the process of change

 

 

Strengthening the role of women with disabilities in humanitarian action: A facilitator’s guide

Women's Refugee Commission
February 2017

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"Strengthening the Role of Women with Disabilities in Humanitarian Action: A Facilitator’s Guide" was designed by the Women’s Refugee Commission, in collaboration with organizations of women with disabilities in Africa and South Asia. It is a tool to support women leaders to provide training to members, colleagues and/or partners on humanitarian action. The training is intended to enhance the capacity of women with disabilities to effectively advocate on women’s and disability issues within relevant humanitarian forums at national and regional levels by:
- increasing understanding of the humanitarian system;
- helping participants identify gaps and opportunities for inclusion of women and girls with disabilities within the humanitarian system; and,
- developing advocacy plans to strengthen access and inclusion.

The Women’s Refugee Commission is deeply grateful to the women with disabilities who provided input and feedback after participating in the pilot training, as well as the Network of African Women with Disabilities, the African Disability Alliance, South Asia Disability Forum, and Special Talent Exchange Program in Pakistan, with which we have had an ongoing partnership in this wider project.

Right to health: Reality of persons with spina bifida and hydrocephalus

MCPHERSON. Amy
January 2017

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"This report maps the situation of persons with SBH in relation to healthcare access and is a follow up of the CRPD Concluding Observations Art.25. Through a comprehensive survey, IF collected valuable data on the experiences, satisfaction, and perceptions of healthcare coverage of individuals with SBH across Europe. Based on its findings, the financial coverage of treatment and assistive products for patients with SBH is grossly insufficient across the EU. Europe as a whole lacks multidisciplinary care and specialised SBH teams, which translates into long waiting times and insufficient knowledge of the SBH specificities. 

Considering these findings, IF urges the EU Member States to adequately support the healthcare needs of persons with SBH, and to invest more substantially into creating multidisciplinary clinics that can help avoid preventable complications 11 and may reduce the overall burden 12 on the patient and the system. In addition, the Member States should actively support creation of the European Reference Networks as a way of improving care for persons with SBH. IF also calls on the European institutions for support in training medical professionals on rights of persons with disabilities."

Spotlight on Sustainable Development Goal 5: Achieve gender equality and empower all women and girls - UN WOMEN 2017

UN WOMEN
2017

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Spotlights are made on areas of the Sustainable Development Goal (SDG) 5, to achieve gender equality and empower all women and girls, and specific targets and indicators are given. The spotlights are on intimate partner violence, harmful practices (including child marriage and female genital mutilation (FGM)), unpaid care and domestic work, women in leadership, sexual and reproductive health and the gender data gap. Data gaps are identified and a five year programme is outlined, Making Every Women and Girl Count, which is designed to provide technical and financial support to countries to improve the production and use of gender statistics in order to monitor the implementation of gender equality commitments in the 2030 Agenda.

Disability, CBR and inclusive development (DCID)

2016

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"Disability, CBR and Inclusive Development aim to enhance knowledge in the field of disability, addressing the needs of practitioners in the field (particularly those from developing countries), policy makers, disabled persons’ organizations and the scientific community. The journal encourages publication of information that is evidence-based, to improve current knowledge and programmes implementation, and will be openly and freely accessible to all readers" ”Published four times a year, previously published two times per year
Free

The Functions of Disabled People’s Organisations (DPOs) in Low and Middle-income Countries: a Literature Review

YOUNG, Rebekah
REEVE, Mathew
GRILLS, Nathan
2016

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Purpose: The aim of this study was to review peer-reviewed literature on the roles and functions of Disabled Peoples’ Organisations (DPOs) in low and middle-income countries, and their outputs and outcomes for people with disabilities.

 

Method: Online databases were searched without date or language limiters (Medline, CINAHL, Scopus, Embase and Cochrane), using a combination of two key word search strategies. Eleven studies were selected for inclusion in this review on the basis of predetermined inclusion and exclusion criteria. Included studies underwent quality assessment using the Critical Appraisal Skills Programme (CASP) and Downs and Black’s criteria for quality assessment. Data for thematic analysis was then grouped under the broad themes of: participation and factors that facilitate participation; development of partnerships and connections; and self-development and self-help.

 

Results: There was some evidence within the included studies to suggest that DPOs can produce significant, positive outcomes for persons with disability in terms of factors such as employment rates, access to microfinance and bank loans, accessibility of housing, acquisition of orthopaedic devices, involvement in civil society, development of friendships and networks, and participation in training programmes. Although the studies under review largely did not investigate the long-term impact of the reported DPO functions and outputs, some of the short-term outputs may be considered proximal indicators of outcomes such as increased empowerment and wellbeing.

 

Conclusion: The 11 studies in this review suggested that DPOs can be effective in achieving their stated aims of promoting wellbeing, participation and rights of people with disabilities in low and middle- income countries.

 

National Mechanisms for Reporting and Follow-up : A practical guide to effective state engagement with international human rights mechanisms

United Nations High Commissioner for Refugees (UNHCR)
December 2016

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This Guide seeks to provide practical advice on the critical elements that States need to consider when establishing or strengthening their national mechanism for reporting and follow-up, and illustrates this advice with examples of State practice. It is based on the more comprehensive Study of State Engagement with International Human Rights Mechanisms (HR/PUB/16/1/Add.1), which contains more detailed information on these practices

Disability and social justice

MLADENOV, Teodor
2016

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This article explores the significance of disability for social justice, using Nancy Fraser’s theory of justice as a guideline. The article argues that the disability perspective is essential for understanding and promoting social justice, although it is often disregarded by critical thinkers and social activists. The article looks at three prominent strategies for achieving social justice under conditions of capitalism: economically, by decommodifying labour; culturally, by deconstructing self-sufficiency; and politically, by transnationalising democracy. The disability perspective reveals that decommodification of labour requires enhancement of disability support, deconstruction of self-sufficiency requires valorisation of disability-illuminated interdependence, and transnationalisation of democracy requires scrutiny of the transnational production of impairments. The article discusses each of these strategies in theoretical and practical terms by drawing on disability studies and Fraser’s analyses.

Sexual Abuse of Persons with Disabilities - Research

Rob Aley
et al
November 2016

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The aim of the research was to investigate the social, cultural and institutional factors which contribute to the high incidence of sexual abuse of persons with disabilities in East Africa and to identify interventions which could change detrimental attitudes, beliefs and practices which perpetuate this high incidence. The research is framed within the United Nations Convention on the Rights of Persons with Disability (UNCRPD), particularly articles 12, 13 and 16.

The study used a qualitative participatory action research approach and worked with local partner organisations and Ugandan and Kenyan field level researchers to collect data. Survivors of sexual abuse were not interviewed but instead the research investigated the understandings, beliefs and practices of a range of service providers and key responders who are involved in the prevention of and response to sexual abuse against persons with disabilities in their communities. Groups consulted included police, teachers, health-care workers, government administrators, faith and community organisations and traditional leaders, as well as persons with disabilities and their parents. Participatory workshops were run with a reference group of people with disabilities (with a range of impairments and experiences) and relevant specialists at the initial stage and during the participatory analysis process. After initial orientation and training the field researchers undertook a total of 52 individual interviews and 9 focus group discussions with a range of stakeholders.

The overall findings show that social attitudes and understanding of disability and sexuality in general are strong influencing factors on the risks that persons with disability face in relation to sexual abuse. Participants reported a range of harmful attitudes and beliefs about disability and about the needs and rights of persons with disabilities. It is very common for cases of abuse to go unreported and to be dealt with at the family or community level, rather than being viewed as a serious criminal matter which should be taken to the formal authorities. Many barriers exist, especially at community level which mean abuse does not get reported. Lack of awareness and knowledge, stigma and exclusion and poverty were key drivers of continuing abuse and survivors of abuse seldom get proper support. Guidelines, training and clear procedures for good practice in the various professions were generally weak or absent. Key recommendations were generated for both community level interventions and in relation to policy and training at regional and national levels. The practical implementation of some recommendations was undertaken.

Sexual Abuse of Persons with Disabilities - Research

ALEY, Rob
et al
November 2016

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Abstract
The aim of the research was to investigate the social, cultural and institutional factors which contribute to the high incidence of sexual abuse of persons with disabilities in East Africa and to identify interventions which could change detrimental attitudes, beliefs and practices which perpetuate this high incidence. The research is framed within the United Nations Convention on the Rights of Persons with Disability (UNCRPD), particularly articles 12, 13 and 16.

The study used a qualitative participatory action research approach and worked with local partner organisations and Ugandan and Kenyan field level researchers to collect data. Survivors of sexual abuse were not interviewed but instead the research investigated the understandings, beliefs and practices of a range of service providers and key responders who are involved in the prevention of and response to sexual abuse against persons with disabilities in their communities. Groups consulted included police, teachers, health-care workers, government administrators, faith and community organisations and traditional leaders, as well as persons with disabilities and their parents. Participatory workshops were run with a reference group of people with disabilities (with a range of impairments and experiences) and relevant specialists at the initial stage and during the participatory analysis process. After initial orientation and training the field researchers undertook a total of 52 individual interviews and 9 focus group discussions with a range of stakeholders.

The overall findings show that social attitudes and understanding of disability and sexuality in general are strong influencing factors on the risks that persons with disability face in relation to sexual abuse. Participants reported a range of harmful attitudes and beliefs about disability and about the needs and rights of persons with disabilities. It is very common for cases of abuse to go unreported and to be dealt with at the family or community level, rather than being viewed as a serious criminal matter which should be taken to the formal authorities. Many barriers exist, especially at community level which mean abuse does not get reported. Lack of awareness and knowledge, stigma and exclusion and poverty were key drivers of continuing abuse and survivors of abuse seldom get proper support. Guidelines, training and clear procedures for good practice in the various professions were generally weak or absent. Key recommendations were generated for both community level interventions and in relation to policy and training at regional and national levels. The practical implementation of some recommendations was undertaken.

Sexual violence against women with disabilities in Ghana: Accounts of women with disabilities from Ashanti Region

OPOKU, Maxwell Peprah
HUYSER, Nicole
MPRAH, Wisdom Kwadwo
ALUPO, Beatrice Atim
BADU, Eric
2016

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Purpose: Women with disabilities are particularly vulnerable to violence and often at risk of being violated sexually. The study aimed to document the causes and consequences of sexual violence against women with disabilities in Mampong Municipality of Ashanti region in Ghana.

 

Methods: This exploratory study recruited 41 participants, made up of women living with intellectual, visual and hearing disabilities, were interviewed using convenience and snowball sampling techniques. 

 

Results: It was found that many participants had suffered sexual violence and factors such as poverty, rejection by families, isolation and unemployment were given as the cause. It was also found that these women suffered consequences such as unwanted pregnancies, divorce, outright rejection and psychological trauma.

 

Conclusion: The current situation of women with disabilities make it impossible for them to escape sexual violence. Therefore, it is essential that national awareness campaigns be fashioned to encourage people to provide support to their family members with disabilities. 

Participatory and emancipatory approach in disability research. Possible allies for supporting active citizenship, civil rights and actions of social innovation.

TRAINA, Ivan
August 2016

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Participatory and emancipatory approaches in disability research are addressed through three research questions related to: the extent the participatory approach can encourage an active citizenship paradigm for the involvement of disabled people; the extent emancipation through research can contribute to the affirmation of a civil rights model of disability; and the extent it is possible to consider these approaches as tools that can support the design and implementation of socially innovative actions. The paper considers the academic literature and a reviews international documents, assuming a disability perspective

Considering Disability Journal. DOI: 10.17774/CDJ12015.2.2057584

"Working to improve our own futures": Inclusion of women and girls with disabilities in humanitarian action

Women's Refugee Commission
May 2016

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While humanitarian organizations are increasingly recognizing women and girls with disabilities in policies and guidelines, there are still significant gaps in operationalizing this. Their needs and capacities are often under-represented in gender, protection and disability forums. Furthermore, organizations of women with disabilities, which can play a critical role in bridging the development/humanitarian divide, are not meaningfully included in humanitarian coordination and decision-making.This report documents the findings from a global mapping on inclusion of women and girls with disabilities in humanitarian action. It presents recommendations to strengthen the role of organizations of women with disabilities. These organizations have the skills and expertise to identify and monitor protection concerns in affected communities, bridging the humanitarian - development divide. However, they face a vicious cycle of exclusion from both the women's and disability rights movements, which in turn reduces their access to financial opportunities and capacity development.

Opera : a four step framework for monitoring economic, social and cultural rights fulfillment

CENTER FOR ECONOMIC AND SOCIAL RIGHTS (CESR)
March 2016

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This infographic illustrates the OPERA framework. This framework is for monitoring economic, social and cultural rights fulfilment and consists of four levels of analysis: outcomes, policy efforts, resources and assessment. The infographic lays out specific benchmarks and for what is measured by each level of analysis and how each concept is to be measured

Disability and social protection programmes in low- and middle-income countries: a systematic review

BANKS, Lena Morgon
MEAKLE, Rachel
MACTAGGART, Islay
et al
2016

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“This paper systematically reviews the evidence on whether persons with disabilities in low- and middle-income countries are adequately included in social protection programmes, and assesses the financial and non-financial impacts of participation. Overall, we found that access to social protection appears to fall far below need. Benefits from participation are mostly limited to maintaining minimum living standards and do not appear to fulfil the potential of long-term individual and societal social and economic development. However, the most notable finding of this review is that there is a dearth of high-quality, robust evidence in this area, indicating a need for further research.”

“Our children have the right to an education too”: Strategies employed by Orange Farm Caregivers of Children with Disabilities in Pursuit of the Right to a Basic Education

Elphick, Jean
De SasKropiwnicki, Zosa
Elphick, Rosalind
2016

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Purpose: This paper aims to understand the agency that caregivers who participated in a CBR empowerment component programme exercised, in order to promote the rights of their children with disabilities to a basic education.

 

Methods: An interdisciplinary theoretical framework and qualitative methodology were used to examine the agency and the opportunity structures within which the caregivers operate. Focus group discussions, case study interviews and secondary Programme data were analysed using manual thematic analysis.

 

Results: Thousands of children with disabilities in South Africa are effectively denied the right to a basic education as a result of discriminatory norms, stigmatising discourses and unjust power relations. Yet, a group of caregivers have successfully advocated for their children with disabilities in the township of Orange Farm, Gauteng. Their lobbying has contributed to the establishment, by the State, of a new school.

 

Conclusion and Implications: The findings suggest that human rights advocacy movements, as well as disability organisations, would do well to recognise and encourage the power and agency possessed by caregivers of children with disabilities. Catalysing civic action and providing opportunities for active citizenry and self-help seem to nurture increased efficacy and competence at navigating systems and accessing rights. While advocacy organisations may act as proxy agents, direct and collective agentic strategies should be nurtured. 

 

In implementing inclusive education, policy makers and the Department of Education should recognise the role that caregivers of children with disabilities can play, and the potential contribution that their motivation, resourcefulness, and disability-related knowledge can make.

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