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Disabled men with muscular dystrophy negotiate gender

ABBOTT, David
CARPENTER, John
GIBSON, Barbara E
HASTIE, Jon
JEPSON, Marcus
SMITH, Brett
2019

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Disability is often portrayed as a one-dimensional category devoid of further intersections. Work which has addressed the intersection of disability and male gender has rarely considered different types of disability or impairment, or foregrounded the experiences of disabled men themselves. This article is based on empirical work carried out in England with men who have Duchenne muscular dystrophy (DMD). We explored with participants their sense of themselves as men and their commonalities and differences with other men. Findings suggest that men with DMD claim, reject and redefine what it meant to them to be men. Doing gender was often heavily reliant on the availability and permission of others. Our study highlights the usefulness of exploring gender with men with particular experiences of disability and of looking at how this might change over a life course, especially when the nature and extent of the life course is a precarious one.

Sexual exploitation and abuse and sexual harassment (SEAH) of people with disabilities: prevalence, incidence and severity, Disability Inclusion Helpdesk Research Report No. 4

FRASER, Erika
LEE, Harri
WAPLING, Lorraine
February 2019

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This rapid review addresses the queries:

  • What is known about the prevalence, incidence and severity of the sexual exploitation and abuse and sexual harassment of people with disabilities. This should take into account age and gender where possible, and humanitarian and conflict contexts. It would be good to know: - Globally and in specific regions, what evidence exists about the extent of sexual exploitation, abuse and harassment of people with disabilities (disaggregated by age and gender)?
  • What evidence exists about the extent of sexual exploitation, abuse and harassment of people with disabilities in the aid sector, including both recipients of aid and working in the aid sector (disaggregated by age and gender)?
  • What are the barriers to reporting for people with disabilities?
  • What is your assessment of the quality of the evidence? Where are the gaps?

Disability and unpaid care work

CBM AUSTRALIA
2019

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This report looks at the impact of unpaid care work on disability inclusive programming and shares some practical ideas for how to address this based on experiences of CBM partners and other agencies. 

 

Programme experience discussed include:

  • Building agency and relationships: a community mobilisation approach in Jharkhand, India
  • Engaging men as care advocates in the Phillipines
  • Recognising and supporting care givers in Ghana
  • Good practice

 

Everyday life in older men living alone – a complex view needing a biopsychosocial perspective

VON HEIDENKEN WAGERT, Petra
NYGARD, Susanne
CEDERBOM, Sara
June 2018

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Purpose: To explore how older men living alone, describe their everyday activities and their abilities as well as how they could be helped in everyday life.

 

Materials and methods: Qualitative semi-structured interviews were analysed with inductive content analysis. Eight men aged 65+ years were included. They were all living alone, albeit with home help services. They were able to walk and had sufficient cognitive ability.

 

Results: The analysis resulted in one theme “A driving force of managing activities and overcome hindering factors requires a broad spectrum of prerequisites for participating in everyday life” with the following four categories: Importance of everyday activities; individual prerequisites enabling everyday activities; body and mind inhibit, and react to the decreased, abilities; and importance of the environment.

 

Conclusions: The results generate a complex view of older men’s everyday life. It is important for older men’s independence that health care and rehabilitation staff adopt a comprehensive view and work from a biopsychosocial (BPS) perspective.

Severe-to-profound hearing impairment: demographic data, gender differences and benefits of audiological rehabilitation

TURUNEN-TAHERI, Satu
CARLSSON, Per-Inge
JOHNSON, Ann-Christin
HELLSTROM, Sten
June 2018

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Purpose: The purpose of this study was to identify and report demographic data of patients with severe-to-profound hearing loss, assess participation in audiological rehabilitation and analyze the benefits of various rehabilitation methods.

 

Materials and methods: Data on 4286 patients with severe-to-profound hearing impairments registered in the Swedish Quality Register of Otorhinolaryngology over a period from 2006–2015 were studied. Demographic data, gender differences, audiological rehabilitation and benefits of the rehabilitation were analyzed.

 

Results: Group rehabilitation and visits to a hearing rehabilitation educator provided the most benefits in audiological rehabilitation. Only 40.5% of the patients received extended audiological rehabilitation, of which 54.5% were women. A total of 9.5% of patients participated in group rehabilitation, with 59.5% being women. Women also visited technicians, welfare officers, hearing rehabilitation educators, psychologists and physicians and received communication rehabilitation in a group and fit with cochlea implants significantly more often than did men.

 

Conclusions: The study emphasizes the importance of being given the opportunity to participate in group rehabilitation and meet a hearing rehabilitation educator to experience the benefits of hearing rehabilitation. There is a need to offer extended audiological rehabilitation, especially in terms of gender differences, to provide the same impact for women and men.

Gender and diagnostic impact on everyday technology use: a differential item functioning (DIF) analysis of the Everyday Technology Use Questionnaire (ETUQ)

KOTTORP, Anders
MALINOWSKY, Camilla
LARSSON-LUND, Maria
NYGARD, Louise
May 2018

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Background: As the use of everyday technology is increasingly important for participation in daily activities, more in-depth knowledge of everyday technology use in relation to diagnosis and gender is needed. The purpose of this study was to investigate the stability of the perceived challenge of a variety of everyday technologies across different samples of varying diagnoses including both males and females.

 

Methods: This cross-sectional study used 643 data records from clinical and research samples, including persons with dementia or related disorders, acquired brain injury, intellectual disability, various mental or medical disorders, and adults without known diagnoses. The Everyday Technology Use Questionnaire, comprising 93 everyday technology artifacts and services (items) measuring the level of everyday technology challenge and relevance of and perceived ability to use these was used for data gathering. A two-faceted Rasch model in combination with differential item functioning (DIF) analyses were used for comparing item hierarchies across samples.

 

Results: Only three items (3.2%) demonstrated a clinically relevant DIF by gender, and nine items (9.7%) by diagnosis.

 

Discussion: The findings support a stable hierarchy of everyday technology challenge in home and community that can facilitate planning of an accessible and inclusive society from a technological departure point

Treated worse than animals : abuses against women and girls with psychosocial or intellectual disabilities in institutions in India : summary and key recommendations

HUMAN RIGHTS WATCH (HRW)
December 2014

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This illustrated summary presents the key findings and recommendations of the full report which found that female patients with psychosocial or intellectual disabilities at institutions in India experience widespread neglect and abuses of their rights, including denial of legal capacity, a lack of community-based support and services, verbal and physical violence as well as involuntary treatment and admission. It recommends that “India undertake urgent reforms to guarantee the legal capacity of people with psychosocial or intellectual disabilities and take steps to shift from institutional to community-based care and services for people with disabilities”, with specific recommendations for central and state government level, national and state commissions and international donors

 

Note: Full report, summary report and video also available

Disability and masculinity in South African autosomatography

LIPENGA, Ken J
2014

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This article examines the representation of disability by disabled black South African men as portrayed in two texts from the autosomatography genre, which encompasses first-person narratives of illness and disability. Drawing on extracts from Musa E. Zulu’s The language of me and William Zulu’s Spring will come, the article argues that physical disability affects heteronormative concepts of masculinity by altering the body, which is the primary referent for the construction and performance of hegemonic masculinity. In ableist contexts, the male disabled body may be accorded labels of asexuality. This article therefore reveals how male characters with disabilities reconstruct the male self by both reintegrating themselves within the dominant grid of masculinity and reformulating some of the tenets of hegemonic masculinity.

Oscar Pistorius and the melancholy of intersectionality

SWARTZ, Leslie
2013

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The alleged shooting by Paralympian and Olympian athlete Oscar Pistorius of his girlfriend Reeva Steenkamp has led to strong reactions worldwide. Scholars in the field of disability studies have expressed shock and disappointment in response both to the death itself and to its implications for the representation of disability. In South Africa in the wake of the death of Ms Steenkamp, much has been made both by critics of Pistorius and by his defenders about his status as a white South African man, but little has been said about disability issues. This silence in South Africa about disability as a possible identity factor in this case draws attention to the extent to which disability questions remain profoundly raced and gendered, and influenced by the colonial and apartheid past. The tragic alleged shooting by Oscar Pistorius draws attention back to how important intersectionality is to understanding disability in South Africa and other unequal societies.

Sexual violence victimization against men with disabilities

MITRA, Monika
MOURADIAN, Vera E
DIAMOND, Marci
October 2011

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This article presents information supporting that men with disabilities are at a heightened risk for lifetime and current sexual violence. The article documents the prevalence of lifetime and past-year sexual violence victimization among a representative sample of men with disabilities in Massachusetts and compares its prevalence among men with disabilities to that of men without disabilities and women with and without disabilities
American Journal of Preventive Medicine, Vol 41, No 5

The roles and influence of grandmothers and men : evidence supporting a family-focused approach to optimal infant and young child nutrition

AUBEL, Judi
2011

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"This report reviews both published and gray literature from the past 25 years that addresses intra-household roles and dynamics related to infant and young child nutrition-specifically the roles and influence of senior women, or grandmothers, and men. The report examines infant and young child nutrition and other maternal and child health interventions explicitly involving grandmothers and/or men and reports on each intervention’s effectiveness"

Data availability on men's involvement in families in sub-Saharan Africa to inform family-centred programmes for children affected by HIV and AIDS

HOSEGOOD, Victoria
MADHAVAN, Sangeetha
June 2010

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This article describes the availability of data about men and families, in particular fathers, in sub-Saharan African surveys and longitudinal population cohorts. To date, there has been limited research to examine men's role in providing emotional and material support and protection for children and families affected by HIV and AIDS, however increasing interest in family-oriented interventions around HIV and AIDS mean that such information needs to be collected

Engaging men to increase support for optimal infant feeding in Western Kenya

MARTIN, Stephanie
MUKARIA, Altrena
MAERO, Peter
2010

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Engaging male partners in breastfeeding promotion and education, as well as providing fathers with knowledge and skills for optimal breastfeeding practices, has been shown to positively impact exclusive breastfeeding rates. In order to address poor infant feeding practices, the Infant and Young Child Nutrition Project is integrating infant and young child nutrition into current community-level male involvement activities, conducting pilot activities with men’s group leaders in Western Province, Kenya in August 2009, as part of a larger community-based optimal infant feeding intervention

Alleviating the burden of responsibility : men as providers of community-based HIV/AIDS care and support in Lesotho

NEWMAN, Constance
September 2009

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This is an overview of a study of men as providers of HIV and AIDS care and support in Lesotho to help address the problems of occupational segregation with regards to human resources for health. Such inequality ..."impedes the development of robust health workforces. In the era of HIV/AIDS, this makes for inequities, inefficiencies and missed opportunities by creating barriers to health workforce entry and limiting the possible pool of formal and nonformal health workers. In Lesotho, as in many other countries, the HIV and AIDS care burden falls on the shoulders of women and girls in unpaid, invisible household and community work. This gender inequity in [human resources for health] needs to be addressed to ensure fair and sustainable responses to the need for home- and community-based HIV/AIDS care and support"

Gender and care : supporting resources collection

ESPLEN, Emily
February 2009

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This collection show-cases existing work on gender and care, including a mix of research papers, policy briefings, advocacy documents, case study material and practical tools from diverse disciplines and geographical regions - all focusing on different aspects of care. Summaries and links to key resources are provided, as well as information on international frameworks and conventions relating to care

Gender and development in brief : gender and care

ESPLEN, Emily
February 2009

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This bulletin aims to inspire thinking around how we can move towards a world in which individuals and society recognise and value the importance of different forms of care, but without reinforcing care work as something that only women can or shoud do. It offers an overview of why care is important and the approaches needed to bring about change, including an article which looks at innovative ways of challenging gender norms to bring about a more equal sharing of care responsibilities between men and women, and an inspiring example of home-based carers in Africa coming together to get their priorities heard

Gender and care : overview report

ESPLEN, Emily
January 2009

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This overview report explores how we can move towards a world in which individuals and society recognise and value the importance of different forms of care, but without reinforcing care work as something only women can or should do. It includes recommendations for donors, government and educators

Reaching truckers in Brazil with non-stigmatizing and effective HIV/STI services

CHINAGLIA, Magda
et al
May 2007

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In 2001, the Population Council conducted an assessment in Brazilian border areas, commissioned by the Brazilian Ministry of Health, with support from USAID/Brazil, to determine which populations were most in need of HIV prevention activities. The research findings in the southern region revealed the presence of an extremely mobile, international truck driver community with little or no access to HIV prevention, testing and treatment services. In response to this need, Horizons/Population Council implemented an operations research study focused on trucker drivers (2002-2005) in the south of Brazil. In collaboration with the administration of the customs stations, municipal and state STI and AIDS programmes, and Health Ministries, the investigators sought to examine the feasibility and impact of an HIV prevention project targeted at truckers crossing the southern border of Brazil

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