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Disability inclusion in child protection and gender based violence programmes. Outreach, safe identification and referral of women, children, and youth with disabilities

WOMENS REFUGEE COUNCIL
UNICEF Lebanon
February 2018

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A needs assessment conducted in 2017 confirmed that women, children and youth with disabilities in Lebanon and their caregivers are facing a range of gender based violence (GBV) -related risks including: child marriage among girls with disabilities; exploitation of women and adolescent girls with disabilities and female caregivers; intimate partner violence (IPV) against women with disabilities; sexual harassment by male community members

This guidance is designed to support frontline workers, community volunteers and mobilizers who are working in GBV prevention and response, and their supervisors, to foster inclusion of persons with disabilities in their community activities. It includes guidance, key actions and tools to improve accessibility of existing community processes and activities relating to GBV. 

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

TEFERA, Balaynesh
et al
September 2017

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Ethiopian disabled women’s experiences of intimacy, pregnancy and motherhood are reported. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants. Interview data revealed that mothers experienced significant challenges with regard to accessibility of health centers, physician’s lack of knowledge about and problematic attitudes toward them and more general societal prejudices towards individuals with disability. The 13 participants were employed women with physical or visual disabilities, and the interviewees were from the Addis Ababa metropolitan area, Ethiopia.

 

Disability & Society, 32:10, 1510-1533

DOI: 10.1080/09687599.2017.1361385

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

TEFERA, Belaynesh
VAN ENGEN, Marloes
VAN DER KLINK, Jac
SCHIPPERS, Alice
2017

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This study aimed to provide better understanding of intimacy and marriage, pregnancy, birth, and motherhood experiences of women with disability in Ethiopia. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants, as told in their own words. The result of the interviews indicated that relationships and motherhood proved a very rewarding option for women with disabilities. They also expressed their need for intimacy regardless of society’s denial. Challenges identified include negative societal attitudes toward women with disabilities regarding relationship, pregnancy, and child-rearing. Accessibility of health centers in addition to the ignorance and negative attitudes of the physicians are also reported to be major challenges for the interviewees. This study highlights how rewarding the experience of motherhood was for the interviewees and also shows that women with disabilities face challenges at every step of their experiences, because of society’s prejudices toward disability.

Social relationships, mental health and wellbeing in physical disability: a systematic review

TOUGH, Hannah
SIEGRIST, Johannes
FEKETE, Christine
May 2017

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The aim of this study is to systematically review quantitative studies exploring associations of social relationships with mental health and wellbeing in persons with physical disabilities. The objective is to summarise a complex and heterogeneous body of empirical research on the association of different social relationship constructs with mental health and wellbeing in physical disability and to highlight conceptual and methodological deficiencies in the field of research. The literature search included original articles published in English between January 1, 1995 and May 31, 2016. Data was extracted on study and participants’ characteristics, independent and dependent variables, used measures and effects sizes of associations between social relationships and mental health or wellbeing. A narrative review was performed to synthesise findings along the constructs social support, social networks, negative social interactions, family functioning and relationship quality.  Of the 63 included studies, 47 were cross-sectional and 16 longitudinal.

BMC Public Health (2017) 17:414 

DOI 10.1186/s12889-017-4308-6

Linking rehabilitation and social work using the personalised social support process: Steps to establish a social work unit and future directions for social work in Cambodian PRCs using the model developed at Kampong Cham

PEARSON, Anita
SONG, Sit
2017

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This publication intends to draw lessons learned from the set-up of a Social Work (SW) unit in the PRC in Kampong Cham province of Cambodia using the Personalized Social Support (PSS) process and provide an example of person-centered approach in rehabilitation service delivery, to be considered by PWDF and other rehabilitation I/NGOs and promoted within other PRCs in Cambodia. The specific objectives of this publication are: 

  • To identify recruitment strategies and clinical activities conducted by the SW unit 
  • To consider the capacity development of SW staff along the development of a SW unit
  • To outline how SW and PSS are linked to the Cambodian Ministry of Social Affairs Veterans and Youth Rehabilitation Guidelines on Physical Rehabilitation in Cambodia4 (also known as the Standard Working Procedures -SWP) with reference to its application.
  • To consider how SW interventions and PSS contributes to service users’ social participation and rights.

Capturing best practices through a ‘’lessons learnt’’ process can be utilized to advocate for the adoption and replication of such a model within wider rehabilitation services in Cambodia.

This publication was developed by a mixed methods approach on the basis of various sources and tools, including:

  • Desk review including collection of documents and tools used by the SW unit, and field visit reports
  • Workshops/meetings with the PRC Manager, PRC Unit heads and Focal Clients (FC) to gain reflections on the process and map a reverse pathway of change
  • Key Informant interviews: Interviews with members of the project team and local authorities.
  • Case study frames were designed and used as well as some questions from SCOPEO5 Quality of life linked to social and personal relationships during the interview. 
  • Interviews with 15 beneficiaries (SW Clients at the PRC) to assess the impact of SW input over a 13 month period from June 2015 to July 2016

Let’s talk about sex: How people with intellectual disability in Australia engage with online social media and intimate relationships

DARRAGH, Judith
REYNOLDS, Louise
ELLISON, Caroline
BELLON, Michelle
2017

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The purpose of this study was to explore if people with intellectual disability access internet based social media, and if so, if they use it to form relationships that express their sexuality.

Cyberpsychology: Journal of Psychosocial Research on Cyberspace, 11(1), Article 9.

https://doi.org/10.5817/CP2017-1-9

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.

Disability, family and identity

SCHNEIDER, Cort
October 2016

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Many people with disabilities struggle with issues that relate to identity development.  Many people with disabilities find it difficult to develop a positive sense of self. There is also no question that familial relationships play a significant part in the process of identity construction for people with disabilities. Thus, it is important to examine how family relationships influence the process of identitydevelopment for people with disabilities. Conversely, it relevant to explore how a person’s identity development can impact his or her relationship with family members. This article employs an autoethnographic approach to research in order to examine issues that relate to disability, identity and family. It elucidates the complex nature of family scripts and identity. In addition this paper contends that the process that an individual goes through in order to “come to terms” with a disabled identity, can transform the relationships that an individual has with various family members.

 

Considering Disability, Vol.1, Issue 3&4

DOI: 10.17774/CDJ1.32016.2.20575874

‘Everyone needs love’ – an interview study about perceptions of love in people with intellectual disability (ID)

MATTILA, Jenni
MÄÄTTÄ, Kaarina
UUSIAUTTI, Satu
2016

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How do people with intellectual disability (ID) perceive love and its role in their lives? The purpose of this study was to give voice to people with ID themselves and provide information about their needs for love. The study analysed how seven Finnish young adults with mild ID (5 women and 2 men) aged between 18 and 31 years described love and the meaning of love in their lives in semi-structured, qualitative theme interviews. The analysis was theory-led content analysis. The findings showed that the young adults with ID could describe love primarily as emotions and concrete acts, but perceived love as knowledge and skills more difficult to describe. However, the meaning of love was considered crucial and important for everyone’s well-being. The study suggests that the views and opinions of people with ID should be given more attention so that the support and guidance they are given would better need their needs. In addition, the study highlights everyone’s right to love? As per the style. Please suggest.

Hear my voice: old age and disability are not a curse. A community-based participatory study gathering the lived experiences of persons with disabilities and older people in Tanzania

MRISHO, Mwifadhi
FAKIH, Bakar
GREENWOOD, Margo
STEFF, Marion
2016

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Community based participatory research (CBPR) was used to provide evidence on the specific nature and experiences of persons with disabilities and older people from their own perspectives in Tanzania, through the lens of social, political, economic and cultural inclusion. The aim was to strengthen efforts to provide services for and improve the lives of people living in the rural and urban settings of Nachingwea and Kibaha Urban Municipal Council. Twenty-nine peer researchers (nine persons with disabilities, 10 older people and 10 Tanzanian Non-Governmental Organisation (NGO) members working in these communities) were involved in the study. A total of 106 stories were collected. Eight priority areas emerged and were chosen by peer researchers for further discussion in groups: access to education and quality learning; access to health services; issues fed back from NGOs; poverty relating to income and dependence; attitudes towards witchcraft and albinism; relationship difficulties and marriage breakdowns; sexual violence and gender issues; poor treatment from family
 

Sharing in the life of the person with disability: A Ghanaian perspective

OWUSU-ANSAH, Frances E
2015

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This thought article was a hermeneutic inquiry into the experiences of informal caregivers of the elderly who are also physically disabled. The experiences of some Ghanaian informal caregivers were examined in three clinical cases and laced with the lived experiences of the author as an informal caregiver and clinician. Two processes were explored. The first relates to how a caregiver is changed through the experience of caregiving by examining the intrapersonal and interpersonal dynamics affecting caregiving. Secondly, the positive ‘shifts’ that occurred in therapy were explored. In the present Ghanaian society it appears that care for the elderly disabled is compounded by the rapid migration of many Ghanaians to ‘greener pastures’ in search of a brighter future, with consequent empty homesteads and fragmentation of the socio-cultural practices that hitherto buttressed informal care for the aged. In the absence of well-established professional care facilities, informal caregiving with its numerous challenges has become the norm for many. This article posited that caregiver self-care is the most important, and yet often forgotten, aspect of informal caregiving. When this is neglected, caregiver burnout is sure to occur, which results in poor physical, mental and emotional health for the caregiver. In this state caregivers may injure both themselves and the care recipients.

For Michael Charlie: Including girls and boys with disabilities in the global South/North

STIENSTRA, Deborah
2015

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Recognizing that there are pockets of the global South in the global North, I illustrate in this paper how Indigenous and northern children with disabilities and their relationships with their care providers have been rendered invisible and excluded by jurisdictional disputes between levels of government, an ongoing drive to institutionalize children with disabilities and longstanding colonial and capitalist values and systems. The paper highlights how Jordan’s Principle, an Indigenous childfirst response offers a small first step in ensuring children with disabilities in Indigenous and northern communities in Canada, access to necessary services in their communities.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 2

Narratives Around Concealment and Agency for Stigma-reduction: A study of Women affected by Leprosy in Cirebon District, Indonesia

PETERS, R. M. H
HOFKER, M. E
VAN BRAKEL, W H
ZWEEKHORST, M B M
SEDA, F S S E
IRWANTO, I
BUNDERS, J F G
2014

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Purpose: This study analyses the experiences of women affected by leprosy, taking into consideration whether they concealed or disclosed their status, and looks specifically at their ‘agency’. The aim is to provide recommendations for stigma-reduction interventions.

 

Methods: The study population consisted of women affected by leprosy who live in Cirebon District, Indonesia. Study subjects were purposively selected on the basis of characteristics such as age and role in the community. After informed consent was obtained, they were interviewed in their homes. Data was collected through semi-structured in-depth interviews. Analysis was done with six points of focus: who knows, care, social stigma, feelings, self-isolation and agency.

 

Results: In total, 53 women were interviewed. Eight were omitted due to ambiguity over who knew about their leprosy status. Five different categories of ‘disclosure’ were identified, ranging from 1 woman who concealed completely to 19 (42%) who disclosed fully. Disclosure created possibilities for care and support, which 84% mentioned they received. In contrast, disclosure was also found to be linked to negative feelings, isolation and social stigma, which 18 women experienced. The women coped with this through acceptance, comforting themselves, trusting in God, focussing on recovery, friendship or finding inspiration in others. 

 

Conclusions: An analysis of these experiences helps to understand how women affected by leprosy are coping, and what they are already doing for and by themselves. This could be a starting point for more appropriate and effective stigma-reduction interventions. It is recommended to consider the following: i) assisting people with their choice, if any, of either concealment or disclosure, ii) the appropriateness of any intervention for people who (want to) conceal their illness, iii) the existing sources of care and support, and iv) the inner strength demonstrated and its three sources (spirituality, relationships and the desire to be cured).

“We can also change” Piloting participatory research with persons with disabilities and older people in Bangladesh

BURNS, Danny
OSWALD, Katy
November 2014

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Sightsavers, HelpAge International, ADD International and Alzheimer’s Disease International worked together with the Institute of Development Studies (IDS) to bring the perspectives of those who live in poverty or who are highly marginalised into post-2015 policy making. The aim of the research was to understand better the experiences of social, political and economic exclusion of persons with disabilities and older people in Bangladesh from their own perspectives. Two groups (community and NGO) of peer researchers collected 70 stories from poor and/or excluded persons with disabilities and older people from each of the two sites: Bhashantek, an urban slum in Dhaka; and Cox’s Bazar, a rural area in southeast Bangladesh. From the stories collected and analysed in workshops, the peer researchers identified 13 priority areas that affect persons with disabilities and older people: accidents and disasters; livelihoods; access to education; medical treatment; family support; exclusion and mistreatment; superstition; access to services; mobility; marriage; land; rape and sexual abuse; the role of grassroots community-based organisations. Recommendations from the researchers are made in each area. The peer research programme was evaluated and guidelines for its use are provided.

Survey of Reproduction Needs and Services: Situation of Persons with Spinal Cord Injuries

JINMING, Z
YUGE, Z
GENLIN, L
YUCHEN, G
SUWEN, C
2014

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Purpose: This article explores the reproductive wants and needs of persons with spinal cord injuries (SCI), along with factors that influence these needs and the services available to them.

 

Method: The study sample comprised persons with SCI from China Rehabilitation Research Centre who matched the research criteria and consented to participate. Data collection took place through questionnaires and in-depth interviews. After the objectives, contents and methods of the survey were explained, 63 respondents answered the questionnaire, and 17 of them (15 men and 2 women) agreed to participate in the in-depth interviews. All the respondents were above 18 years of age, either unmarried or married, and childless.

 

Results: It was found that 85.7% of the respondents wished to have children. The more severe the SCI, the less was the desire for children. Those with higher levels of education were less inclined to have children. While financial situation had little impact on the wish for children, the impact of traditional concepts was significant. The reproductive experiences of other SCI clients had a significant influence on respondents’ desire to have children. More than 50% of the respondents were ignorant that they could have babies after SCI. 96.8% of them believed that a child played an important role in marital stability. Though 54% of the respondents wished to have their sexual and fertility problems addressed in medical and rehabilitation institutions, 93.7% said they had not received any such professional services during the previous year.

 

Conclusions: Although most persons with spinal cord injuries are very keen to have children, their wants and needs are not recognised and little attention is paid to specialized service provision to address their needs. This study suggests that steps such as improving awareness, disseminating knowledge and setting up institutions to provide professional services are necessary to address reproductive needs and to protect the reproductive rights of persons with SCI.

Youth with disabilities: Working Paper 23

GROCE, Nora
KETT, Maria
April 2014

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Of all groups of youth, the group about which we know the least are youth with disabilities. In transition between childhood and adulthood, these are the years when all young people go through physical and psychological maturation, are expected to complete their education, acquire skills and assume a social identity that will enable them to fully participate in their communities and societies. This working paper discusses the issues faced by young people with disabilities and what is known and not known about this distinct age group

Working Paper 23

 

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.

Violence and abuse towards persons with disabilities : international workshop report

DEEPAK, Sunil
et al
2013

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This second part of a community-based rehabilitation workshop report focuses on issues of violence, abuse and sexual abuse towards persons with disabilities. This report presents the information exchanged through formal presentations, personal testimonies, film clips, sharing of experiences and discussions around the workshop theme. The report highlights the main findings and presents five key recommendations
"Going beyond the taboo areas in CBR" workshop, part 2
Agra, India
30 November 2012

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