Disability and sexuality

This key list provides information resources on disability and sexuality for use by people with disabilities, family members, policy makers and practitioners, with a specific focus on inclusive access to sexual health services.

According to the World Disability Report (World Bank and WHO, 2011) an estimated 15% of the world’s population live with a disability. People with disabilities have the same sexual health needs as other people; however, they often face barriers to information and services. Many of these barriers are due to the ignorance and attitudes of society and individuals, including healthcare providers, and not the disabilities themselves.

Some people with disabilities experience physical difficulties in sexual activity on account of their impairment. Others are excluded from appropriate sex education, resulting in poor access to sexual health information and services to protect them from sexually transmitted infections. Furthermore, women with disabilities may receive inadequate access to maternal and reproductive healthcare services, and people with disabilities may also be at increased risk of sexual exploitation and violence.

Existing sexual health services usually can be adapted easily to accommodate people with disabilities. Increasing awareness, resourcefulness and involving disabled people in programme design and monitoring can lead to essential inclusive services. Accessible sexual health education and information can enable disabled people to fully express their sexuality. Inclusive sexual health policies and initiatives are supported by articles 9, 13, 23, 24 and 25 of the Convention on the rights of Persons with Disabilities (CRPD).

We welcome your suggestions: please send comments or suggested additions to sourceassistant@hi-uk.org.

Selected resources

General resources

CBR, social relationships, sexuality and reproductive rights

AMICI DI RAOUL FOLLEREAU (AIFO)

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This website presents the workshop reports and presentations of the first part of an international workshop titled: "Going beyond the taboos in community-based rehabilitation (CBR)." The workshop focused on social relationships, sexuality and reproductive rights. Links are provided to the workshop report and presentations in pdf format “"Going beyond the taboo areas in CBR" workshop, part 1
Agra, India
29 November 2012

Disability and sexuality briefing report

IRISH FAMILY PLANNING ASSOCIATION (IFPA)
2007

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"The following briefing paper gives an overview of the conception of disability and sexuality, the current national and international legal situation, myths and stereotypes, sexual and reproductive health service provision and finally recommendations for actions"

Doing the wild thing : supporting an ordinary sexual life for people with intellectual disabilities

HAMILTON, Carol
2002

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"This article explores how some people with intellectual disabilities have sought to open up pathways towards accessing experiences of sexual expression as a way to move forward towards being able to integrate a concept of sexuality into their lives. Two support workers are interviewed...(and) their comments reveal that access to successful instances of sexual expression for people in this group are currently only available those who are articulate enough and persistent enough to keep trying until they succeed. Barriers to success are isolated and some wider issues surrounding what changes might positively affect this group are discussed"
Disability Studies Quarterly, Vol 22, No 4

Independent Living Institute Virtual Library

INDEPENDENT LIVING INSTITUTE

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A virtual library containing references and access to full text documents from around the world on independent living and related themes: for example women with disabilities, international access solutions and disability and development. Materials cited include reports, resource kits, training manuals, conference papers and journal articles. The database can be searched by author, by selecting a topic from a list of categories such as international development, human rights or UN documents, or by performing a free search. Search results are ranked to indicate best match to search query. There is also a database of organisations and companies working in the disability field

Promoting sexual and reproductive health for persons with disabilities : WHO/UNFPA guidance note

GROCE, Nora
et al
2009

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This resource addresses issues of sexual and reproductive health (SRH) programming for persons with disabilities. SRH, in particular, deserves attention because these needs have been so widely and so deeply neglected. At the same time, however, the approaches discussed here apply broadly to all aspects of health programming for persons with disabilities. This note outlines a general approach to programming and does not address specific protocols for the SRH care and treatment of persons with disabilities It is intended for SRH experts and advocates within UNFPA and WHO as well as those in other development organisations and partners

Promotion of sexual health : recommendations for action

PAN AMERICAN HEALTH ORGANIZATION (PAHO)
2000

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Establishes definitions of terms such as 'sex' and 'sexuality', and discusses basic concepts, concerns and problems related to promoting sexual health. Presents and discusses five basic goals, or broad recommendations for action, to advance the sexual health of people in the Americas.

Sex and disability

THESITE.ORG

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This section of the Thesite.org website provides sex and relationship information, support, and advice for young people with disabilities. Factsheets and articles cover the following topic areas: sex when you’re disabled; dating and practicalities; disability and sexual confidence; dating and disabilities. This resource is useful for youth people with disabilities who are interested in sex and disability issues

Sexual and reproductive health of persons with disabilities

UNITED NATIONS POPULATION FUND (UNFPA)
2007

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This factsheet addresses frequently asked questions related to the field of disability and development, sexual and reproductive health (SRH), and HIV andAIDS. It includes excerpts of international instruments on the sexual and reproductive health of persons with disabilities This document woudl be useful for people looking for brief and basic information on SRH and disability

Sexual health for people with intellectual disability

EASTGATE, Gillian
2008

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This article explores how people with intellectual disability often experience difficulties meeting their sexual needs and desires due to poor education and social isolation. However, the article highlights that people with intellectual disability are capable of safe, constructive sexual expression and healthy relationships with appropriate education and good social support. It emphasises that providing this support is an essential part of supporting people with intellectual disability
Salud Publica Mex, 50 suppl 2

Sexuality and disability

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Sexuality and Disability is an international forum for the publication of peer-reviewed original interdisciplinary scholarly papers that address the psychological and medical aspects of sexuality in relation to rehabilitation

Sexuality and disability

POINT OF VIEW,
CREA

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This website is focuses upon questions a woman with a disability might have - about her body, about the mechanics and dynamics of having sex, about the complexities of being in an intimate relationship or having children, about unvoiced fears or experiences of encountering abuse in some form. It discusses a wide range of topics related to sexuality and presents verious perspectives. this website is useful to anyone interested in sexuality and disability

Sexuality and relationships education for people with down syndrome

WOOD, Mandy
2004

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"This article describes why Sexuality and Relationships Education (SRE) as part of the school curriculum is especially important for individuals with Down syndrome and how parents and professionals can work together to ensure that it is delivered effectively"
Down Syndrome News and Update 4(2)

Sexuality education for individuals with autism spectrum disorders : critical issues and decision making guidelines

TRAVERS, Jason,
TINCANI, Matt
June 2010

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"This paper presents one position in support of sexuality education for children and adolescents with ASD (autism spectrum disorders). The nature of human sexuality is discussed to provide a context for the rights of individuals with ASD to learn about their sexuality. Further justification for providing sexuality education in terms of the unique characteristics of this population is offered in conjunction with potential consequences of failing to provide sexuality education. Lastly, information regarding a decision-making process for sexuality education curriculum is presented, including the responsibilities of families and professionals providing sexuality education"
Education and Training in Autism and Developmental Disabilities, 45(2)

Sexuality in subjects with intellectual disability : an educational intervention proposal for parents and counsellors in developing countries

KATZ, Gregorio,
LAZCANO PONCE, Eduardo
2008

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This article provides information to assist in the development of sexuality in individuals with intellectual disability and to foster their social integration. The article highlights priorities to consider when developing educational interventions for promoting sexual health. This resource is useful to people interested in sexuality in individuals with intellectual disability
Salud pública de México, vol 50, suppl.2

Susan's sex support site

February 2005

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This website offers a number of online resources about disability and sexuality. Topics include gay and lesbian sexuality, aging and sexuality, sexuality and disabled adolescents, and more. The site also contains references to other resources and an online forum

Gender and parenting issues

A health handbook for women with disabilities

MAXWELL, Jane,
WATTS BELSER, Julia,
DAVID, Darlena
February 2007

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This book deals with practical advice on health care for women with disabilities. It has been developed in partnership with health care professionals and disabled women in over 42 countries. It covers the key issues of disability in the community; accessible health care; mental health; sexual health; family planning; and child birth. The book is written in a practical and accessible style, suitable for anyone with an interest in disability, social development and women's health issues. In particular, the book offers a valuable insight into 'real-life' personal experiences of disabled women

Learning from experience : strengthening organisations of women with disabilities. Solidez, Nicaragua

DIXON, Helen
September 2001

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This report examines the organisational strategy of 11 disabled women's groups in Nicaragua. More specifically, this resource explores the experiences of each organisation as they introduce gender perspectives, sexuality and women rights issues into their work, at the local and national level. It concludes by providing recommendations for developing appropriate participatory methodologies. This resource would be useful to anyone with an interest in women right's and disability and development

Reproductive health justice for women with disabilities

ALVARES, Lisa
et al
April 2011

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"This paper highlights the added discrimination that women with disabilities often face in the context of their disparate access to health care, especially in the areas of reproductive health services and sexual health education, and offers recommendations for a twenty-first century response to the vast health care gaps that impact this population"
Barbara Faye Waxman Fiduccia Papers on Women and Girls with Disabilities

Sex and relationships for people with learning disabilities : a challenge for parents and professionals

GARBUTT, Ruth
2008

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"This paper considers some of the issues around sex and relationships for people with learning disabilities. It is essentially a discussion paper, highlighting previous research, and information about the rights of people with learning disabilities to have sex and relationships. It particularly focuses on concerns for parents and some implications for professional practice that have arisen from a research project that is trying to find out more about the issues. The main messages coming from parents within the research project is that there is a need for clear, concise information about sex and relationships for young people with learning disabilities and there is also a need for professionals to give parents more support"
Mental Health and Learning Disabilities Research and Practice Journal, 5

Sex, disability and motherhood : access to sexuality for disabled mothers

O’TOOLE, Corbett Joan
2002

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"This article examines the barriers to sexuality facing mothers with disabilities. These barriers include: stereotypes that disabled mothers are not sexual, lack of resources for essential aspects of parenting, and difficulty in creating time for personal and private adult activities. Recommendations are presented based on the experiences of disabled mothers"
Disability Studies Quarterly, Volume 22, No. 4

Sexuality and disabled parents with disabled children

O’TOOLE, Corbett Joan,
DOE, Tanis
2002

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"This is not a typical academic article. Although it provides references and research information, the perspective is different. It intends to share stories from a lifetime of participant observation on disabled adoptive parents. This article provides a radical reconceptualization of the sexuality experiences of disabled parents"
Sexuality and Disability, Vol 20, No 1

Sexuality and reproductive health

CENTER FOR RESEARCH ON WOMEN WITH DISABILITIES (CROWD)

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The mission of the Center for Research on Women with Disabilities is to promote, develop, and disseminate information to improve the health and expand the life choices of women with disabilities. This section addresses issues for sexuality and reproductive health for women with disabilities by providing useful information and related resources for specific thematics

The sexual and reproductive rights of women and girls with disabilities

FROHMADER, Carolyn,
ORTOLEVA, Stephanie
July 2013

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"This Briefing Paper examines the sexual and reproductive rights of women and girls with disabilities in the context of the future development agenda Beyond 2014 and Post 2015"
Issues Paper
ICPD Human Rights Conference on Sexual and Reproductive Health The Hague, Netherlands
7-11 July 2013

Women, sex and disability : a triple taboo

NELSON, Daniel

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This article describes how sexuality appears to be a major taboo for disabled women in the regions of Africa and India. It highlights how sexual discrimination towards disabled women exists in society and how they are often at a greater risk of contracting HIV and AIDS

Guides

Introduction to sexuality education for individuals who are deaf-blind and significantly developmentally delayed

MOSS, Kate,
BLAHA, Robbie
September 2001

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"This book is designed for parents, professionals, and other caregivers working with school-aged children who have combined vision and hearing loss or deaf-blindness coupled with significant developmental delays. It aims to provide them with special methods to familiarize children with sexual aspects of their daily life...Each chapter takes an in-depth look at a particular aspect of developing sexuality for these children: (a) developing sexuality education programs in a school system; (b) teaching appropriate touch and modesty; and (c) instruction about menstruation, masturbation, coupling, sexual health, and sexual abuse. The last chapter includes readings and resources"

PleasureABLE : sexual device manual for persons with disabilities

NAPHTALI, Kate,
MACHATTIE, Edith
2009

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"This manual was created as a practical resource for persons with disabilities and health care clinicians who work with these clients. It includes research, clinical expertise, and product information to aid with dialogue surrounding sexual and reproductive issues and disabilities. The information presented here is not prescriptive, and the specific products not recommended per se, but are meant to provide examples and illustrations of some of the potential options that can be introduced into the sexual practices of the individual or be used as an adjunct in the discussions of sexuality and disability by the health care clinician. The devices included are a sampling of what is available (in Canada) in 2009"

Sexual health and fertility after brain and spinal cord impairment

INTERNATIONAL COLLABORATION ON REPAIR DISCOVERIES (ICORD),
VANCOVER HOSPITAL & HEALTH SCIENCES CENTRE (WHHSC)

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"The website is being provided in order to disseminate knowledge around sexual changes following spinal cord impairment or traumatic brain injury, and to direct the consumer or other interested parties to services that can be provided, and as well provide an opportunity to ask questions on the Bulletin Board or more privately by email"

The deaf peers' education manual : a training manual, developed by the Kenyan Peer Education Network, with interactive-based activities for basic understanding of sexual health, HIV and AIDS

June 2007

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The purpose of this manual is to provide deaf youth and adults, teachers, parents and guardians with a tool for addressing basic health awareness within an independent framework utilising optimal communication. The activities are participatory and interactive, and are designed with and by deaf Kenyans fluent in Sign Language (SL), and acknowledge the use of other SL variations within the various deaf groups. The three main issues addressed cover sexual education, relationships and hygiene. The manual is designed to blend with the school curriculums/co-curriculum activities, plus other issues that affect students while in school. It also befits other settings such as seminars and workshops, and can be used to tackle a specific subject. It is appropriate for varied ages, communities, cultures, religions, and literacy levels

HIV and AIDS

Disability and HIV & AIDS : a participatory rapid assessment of the vulnerability, impact and coping mechanisms of the disabled people on HIV/AIDS

NGANZI, Patrick,
MATONHODZE, George
2004

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This study assesses the vulnerability, impact and coping mechanisms of disabled people on HIV and AIDS, and suggests strategies for developing an HIV and AIDS programme for disabled people’s organisations. Using participatory methodologies of inquiry, the study found that disabled people perceive themselves to be at higher risk of HIV infection due to their disability, regardless of their awareness levels. Their social exclusion from the mainstream HIV/AIDS services makes the situation worse. The study revealed that the many myths and misconceptions around HIV and disability increase the vulnerability of disabled people to HIV/AIDS, such as the belief that sex with a disabled person cleanses a person of HIV/AIDS. It also revealed that disabled people have limited access to HIV/AIDS information and limited use of HIV/AIDS services mainly because of the nature of their disability, the location of the facilities and the attitudes of service providers. In conclusion, the study revealed that disabled people are at a higher risk of infection by sexually transmitted infections and HIV/AIDS due to their exclusion from mainstream HIV interventions. This situation is further exacerbated by the lack of policy framework on disability and HIV and AIDS

HEARD’s disability and HIV library

HEALTH ECONOMICS AND HIV/AIDS RESEARCH DIVISION (HEARD)
June 2010

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This bibliography contains papers, reports and articles relating to the issue of HIV and AIDS and disability. "These papers reveal findings in relation to the impact of HIV/AIDS on people with disabilities, the disabling effects of HIV/AIDS, sexuality and disability, the attitude and stigma towards disability and interventions in different countries"

HIV/AIDS and disability : an exploration of organizations' responses to HIV/AIDS as it affects people with disabilities

ROHLEDER, Poul Andrew
2008

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This dissertation in clinical psychology explores the extent to which South African schools and organisations that work with persons with disabilities deal with issues of HIV and AIDS. The study indicates that although HIV education takes place, issues relating to HIV and AIDS are handled with much anxiety. The results reveal that in some cases HIV education is used to control and oppress disabled people’s sexual expression, instead of empowering them to have fulfilling sexual lives. Issues regarding sexual abuse and rape are also discussed. The dissertation ends with recommendations regarding further research on disabled people’s experiences and the need to address the silence around issues such as rape and abuse. This resource would be useful for people looking for in-depth information on disability and HIV in general (chapters 2 and 3), and with a focus on South Africa in particular (chapters 5 to 7). Moreover, it would be useful to people interested in the psychological aspects of working in the field of HIV (chapter 4)

HIV/AIDS and individuals with disability

GROCE, Nora Ellen
2005

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This article looks at the impact of HIV on people living with permanent physical, sensory, intellectual, or mental health disability. In particular, it considers whether AIDS messages reach disabled populations and the inequity of access to health care that they face

Promotion of a disability perspective into Uganda's national HIV/AIDS response

KANYESIGYE, Juliet,
ANGURIA, Joseph,
MBABAZI, Enid
February 2007

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This report presents findings of a survey conducted in Uganda into the knowledge, attitudes and behaviour of people with disabilities regarding HIV and AIDS and sexual and reproductive health (SRH) issues, as well as the knowledge and attitudes of SRH and HIV and AIDS service providers to disability. The study provides baseline information for a NUDIPU SRH, HIV and AIDS project, against which progress and achievements can be mesured, and makes recommendations for national and district level responses. It would be interesting to those working in the field of disability in Uganda

Resource manual for disability and HIV/AIDS training

TATARYN, Myroslava
Ed
2006

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This manual was designed for individuals and organisations who want to learn more about disability and HIV and AIDS, and share this information with others. Each chapter follows the story, and dialogue between two disabled people actively learning about HIV and AIDS and their disabilities. Within the context of the characters, this guide provides extensive information on sexuality, HIV biology, prevention, testing and stigma. This resource would be useful for any one with an interest in approaches to disability, HIV and AIDS education and disability and development

Too few to worry about? or too many to ignore?: the exclusion of people with disabilities from HIV programmes in India

MOLL, Kevan
2007

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This report looks at the findings of a research project to identify gaps in HIV awareness, prevention, care and support programmes in India and make recommendations on how HIV planning, policy and practice might be made inclusive of people with disabilities. In over 500 interviews with people with disabilities, levels of awareness of HIV and perceptions of vulnerability were explored as well as how these differ according to sex, age, impairment and location. In addition, organisations working on HIV were visited to look at whether people with disabilities were included in their programmes and organisations working with disabilities for their provision of information on HIV. The main recommendation of the report is that one or more disability NGOs become HIV champions to encourage and support the disability sector to engage with the HIV sector. The report offers a series of suggested strategies and some practical recommendations for both sectors. The project was funded by the Programme Management Office on behalf of the Department for International development

Youth

Canadian youth, sexual health and HIV/AIDS study

COUNCIL OF MINISTERS OF EDUCATION, CANADA (CMEC)
2003

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This survey was undertaken to increase the understanding of the factors that contribute to the sexual health of Canadian youth. It was done by exploring the socio-cultural, socio-environmental and interpersonal determinants of adolescent sexual behaviour. A section of the survey (pp 111-114) looks specifically at disability and sexual activity

Double burden : a situation analysis of HIV/AIDS and young people with disabilities in Rwanda and Uganda

YOUSAFZAI, Aisha,
EDWARDS, Karen
2004

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This analysis was carried out by Save the Children UK after reports from the field suggested that disabled people were not accessing HIV prevention information or services, despite being at higher risk of infection. It outlines ways in which disabled people are not fully included in safer-sex communications: for instance blind people hear talk about condoms, but have never held one; the necessity to have a sign-language interpreter for deaf people compromises their right to confidentiality; young girls with disabilities are more likely to be raped and are less able to negotiate safe sex. It recommends the greater integration of disabled people into health and HIV communications and further research to develop disabled-friendly means of communication

Talking about sex and relationships : the views of young people with learning disabilities

CHANGE
2009

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"This report talks about the Sex and Relationships project. This was a 3-year project that took place at CHANGE, a leading national organisation led by disabled people that is based in Leeds, in England, that fights for the rights of people with learning disabilities...The project found out about the views and experiences of young people with learning disabilities about sex and relationships"

The sexual heath needs of young people with learning disabilities

FRASER, Shirley,
SIM, Judith
2007

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This briefing paper summarises the key findings from an evidence review on the sexual health and wellbeing of young people with learning disabilities. The review assimilates various forms of evidence, including the voices of young people themselves and emerging findings from practice. It also identifies a number of potential future actions that will help ensure that sexual health services and sex and relationships education are better able to meet the needs of young people with learning disabilities, as well as those of their parents and the professionals that support them

Xpress volume 8

INTERNATIONAL PLANNED PARENTHOOD FEDERATION
August 2007

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This issue discusses the sexual and reproductive health of young people living with a disability and the importance of safer sex and sexual pleasure in their lives. Case studies, related studies, and questions and answers are also provided. This resource is useful for people interested in sexual and reproductive health of young people living with a disability