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Equal reproduction rights? The right to found a family in United Nations’ disability policy since the 1970s

VAN TRIGT, Paul
2019

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With the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006, disability as an issue of human rights and international law can no longer be ignored. The history of this convention can be traced back to the 1970s, when disability was framed in United Nations (UN) declarations as a human-rights issue at the global level. One of the recurrent topics of debate during this trajectory was the right of people with dis- abilities to found a family. This right was far from self-evident and was evaluated very differently by various stakeholders.

This study follows the right to have a family in UN disability policy since the 1970s. The history of the family in relation to disability at the global level has been a neglected field of enquiry compared to other concepts such as gender and race. This study investigates how and why the right to found a family was framed in the Declarations on the Rights of Mentally Disabled Persons (1971) and Disabled Persons (1975), the International Year of Disabled Persons (1981), the International Decade of Disabled Persons (1983 − 1992), the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) and the UNCRPD in 2006.

The trajectory of the right of people with disabilities to found a family that emerges from these cases shows a change in the 1990s from a social-policy to a human-rights approach towards disability – which reflects a broader trend in global and local histories of human rights. In the case of reproductive rights of people with disabilities this change meant that the emphasis was laid more on providing a legal protection for the individual against the interference of others (so-called negative freedom) than on enhancing the opportunities for disabled people to practice their (positive) freedom.

Disability and global health: Special issue of International Journal of Environmental Research and Public Health

KUPER, Hannah
POLAK, Sarah
Eds
2019

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Papers included in this special issue are:

 

HIV/AIDS knowledge, attitudes and behaviour of persons with and without disabilities from the Uganda Demographic and Health Survey 2011: Differential access to HIV/AIDS information and services

ABIMANYI-OCHOM, Juie
MANNAN, Hasheem
GROCE, Nora
McVEIGH, Joanne
April 2017

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Uganda is among the first to use the Washington Group Short Set of Questions on Disability to identify persons with disabilities in its Demographic and Health Survey. In this paper, we review the HIV Knowledge, Attitudes and Behaviour component of the 2011 Ugandan Demographic and Health Survey, analysing a series of questions comparing those with and without disabilities in relation to HIV/AIDS knowledge, attitudes and practices. We found comparable levels of knowledge on HIV/AIDS for those with and those without disabilities in relation to HIV transmission during delivery (93.89%, 93.26%) and through breastfeeding (89.91%, 90.63%), which may reflect increased attention to reaching the community of persons with disabilities. However, several gaps in the knowledge base of persons with disabilities stood out, including misconceptions of risk of HIV infection through mosquito bites and caring for a relative with HIV in own household (34.39%, 29.86%; p<0.001; 91.53%, 89.00%; p = 0.001, respectively). The issue is not just access to appropriate information but also equitable access to HIV/AIDS services and support. Here we found that persons with multiple disabilities were less likely than individuals without disabilities to return to receive results from their most recent HIV test (0.60[0.41–0.87], p<0.05). HIV testing means little if people do not return for follow-up to know their HIV status and, if necessary, to be connected to available services and supports. Additional findings of note were that persons with disabilities reported having a first sexual encounter at a slightly younger age than peers without disabilities; and persons with disabilities also reported having a sexually transmitted disease (STD) within the last 12 months at significantly higher rates than peers without disabilities (1.38[1.18–1.63], p<0.01), despite reporting comparable knowledge of the need for safer sex practices. This analysis is among the first to use HIV/AIDS-related questions from Demographic Health Surveys to provide information about persons with disabilities in Uganda in comparison to those without disabilities. These findings present a more complex and nuanced understanding of persons with disabilities and HIV/AIDS. If persons with disabilities are becoming sexually active earlier, are more likely to have an STD within the preceding 12 month period and are less likely to receive HIV test results, it is important to understand why. Recommendations are also made for the inclusion of disability measures in Uganda’s AIDS Indicator Survey to provide cyclical and systematic data on disability and HIV/AIDS, including HIV prevalence amongst persons with disabilities.

PLoS ONE 12(4): e0174877
https://doi.org/10.1371/journal.pone.0174877

Predictors of voluntary HIV counselling and testing services utilization among people with disabilities in Addis Ababa, Ethiopia

ADEREMI, Toyin Janet
et al
June 2014

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“The study investigated HIV testing prevalence and factors associated with the utilization of voluntary HIV counselling and testing (VCT) services among individuals with disabilities in Addis Ababa. The analysis was based on a survey of 209 men and 203 women with disabilities, aged 15–49, who had ever heard about HIV and AIDS in four sub-cities in Addis Ababa. HIV testing prevalence was 53.2%, with no significant difference between males and females. Comprehensive HIV knowledge, living with spouse, and religious affiliations positively predicted utilization of VCT services among participants. Living with both parents and having physical or mental/intellectual disabilities were negative predictors of VCT services utilization. More research on the predictors of utilization of VCT services by gender and urban/rural divides are needed among people with disabilities”

AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, Vol 26, Issue 10

Women’s rights and gender equality in the post-2015 framework : gender and development network position paper

WOODROFFE, Jessica
et al
February 2014

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This GADN position paper calls on world leaders committed to promoting gender equality to prioritise the inclusion of a strong standalone goal on gender equality and women’s rights in the forthcoming negotiations on the post-2015 framework”, alongside mainstreaming to ensure that gender equality is embedded across the framework. It identifies the need for targets that are transformative to promote changes in the power and choices women have over their own lives, focusing on five main areas: violence against women and girls; economic empowerment; political participation and influence in decision making; sexual and reproductive health and rights; and education 

HIV-related disability in HIV hyper-endemic countries : a scoping review

HANASS-HANCOCK, Jill
et al
September 2013

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This article presents the results of the first scoping review to examine the extent, nature and range of disability among people living with HIV in HIV hyper-endemic countries. The studies indicate that people living with HIV experience a variety of disabilities. Impairments in body structure/function comprise the majority of data, with particular focus on mental function. Data on activity limitations and participation restriction were limited, however, they were recorded. They indicate severe impact on people’s life and possible adherence. The review argues that the time has come to elevate the focus holistically on health and life-related consequences of living with HIV and to integrate disability into the discussions and approaches to HIV care

World Journal of Aids, Vol 3, No 3

Disability and HIV : what drives this relationship in eastern and southern Africa?

HANASS-HANCOCK, Jill
REGONDI, Ilaria
NAIDOO, Kerisha
February 2013

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"This article uses global socio-economic and HIV datasets and compares them to data contained in the most recent World Report on Disability in order to examine the relationship between HIV and disability in Eastern and Southern Africa (ESA). The analysis suggests that disability prevalence may be related to HIV-prevalence in ESA. It identifies research and policy gaps and seeks to shed light on the relationship between the two phenomena. It concludes that, more than any other region in the world, ESA needs to ensure better data collection on disability and the inclusion of disability throughout its HIV programmes in order to provide a comprehensive and appropriate response to the epidemic"

African Journal of Disability, Vol 2, No 1 

HIV issues and people with disabilities: A review and agenda for research

GROCE, Nora
et al
January 2013

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The AIDS and Disability Partners Forum at the UN General Assembly High Level Meetings on AIDS in New York in June 2011 and the International AIDS Conference in Washington, DC in July 2012 underscore the attention to the impact of HIV and AIDS on persons with disabilities. However, research on AIDS and disability, particularly a solid evidence base upon which to build policy and programming remains thin, scattered and difficult to access. In this review paper, we summarise what is known about the intersection between HIV and AIDS and disability, paying particular attention to the small but emerging body of epidemiology data on the prevalence of HIV for people with disabilities, as well as the increasing understanding of HIV risk factors for people with disabilities. We find that the number of papers in the peer-reviewed literature remains distressingly small. Over the past 20 years an average of 5 articles on some aspect of disability and HIV and AIDS were published annually in the peer-reviewed literature from 1990 to 2000, increasing slightly to an average of 6 per year from 2000 to 2010. Given the vast amount of research around HIV and AIDS and the thousands of articles on the subject published in the peer-reviewed literature annually, the continuing lack of attention to HIV and AIDS among this at risk population, now estimated to make up 15% of the world's population, is striking. However, the statistics, while too limited at this point to make definitive conclusions, increasingly suggest at least an equal HIV prevalence rate for people with disabilities as for their non-disabled peers.

Access to health care, reproductive health and disability: A large scale survey in Sierra Leone

GROCE, Nora
TRANI, Jean-Francois
BROWN, Joyce Brown
KETT, Maria
BAH, Osman
MORLAI, Teddy
BAILEY, Nicki
2011

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This is the first study to compare health status and access to health care services between disabled and non-disabled men and women in urban and peri-urban areas of Sierra Leone. It pays particular attention to access to reproductive health care services and maternal health care for disabled women. A cross-sectional study was conducted in 2009 in 5 districts of Sierra Leone, randomly selecting 17 clusters for a total sample of 425 households. All adults who were identified as being disabled, as well as a control group of randomly selected non-disabled adults, were interviewed about health and reproductive health. As expected, we showed that people with severe disabilities had less access to public health care services than non-disabled people after adjustment for other socioeconomic characteristics (bivariate modelling). However, there were no significant differences in reporting use of contraception between disabled and non-disabled people; contrary to expectations, women with disabilities were as likely to report access to maternal health care services as did non-disabled women. Rather than disability, it is socioeconomic inequality that governs access to such services. We also found that disabled women were as likely as non-disabled women to report having children and to desiring another child: they are not only sexually active, but also need access to reproductive health services.

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