Towards Disability Inclusive Sexual and Reproductive Health & Rights
Who is this guide for?
This guide is developed for those who are involved in Sexual and Reproductive Health and Rights (SRHR) programmes: programme managers, proposal developers, field coordinators and monitoring staff. The guide follows all the stages of the programme cycle, from development to implementation, monitoring and evaluation.
Why this guide?
People with disabilities around the world have been exposing the damaging misconceptions and deeply ingrained prejudices that exist around disability and sexuality. They call attention to the specific forms of gender based violence they face, such as forced sterilisation, and claim their right to bodily autonomy, sexual pleasure and family planning. Women and girls with disabilities account for almost one-fifth of the world’s population of women, and they are just as likely to be sexually active as their peers without disabilities. Accordingly, they have the same sexual and reproductive health (SRH) needs – and yet they face unique and pervasive barriers to realizing their SRH rights. So it is time we listen to and answer their call!
The UN Convention on the Rights of Persons with Disabilities (CRPD) and the Sustainable Development Goals (SDGs) provide part of the answer, by asserting the right to universal access to healthcare, including SRH. Putting this into practice requires action from all of us.
Do you proactively reach out in your SRHR programmes to youth with disabilities; women and girls with disabilities; sexual and gender diverse people with disabilities; ethnic and religious minorities and migrants with disabilities, etc? Do they enjoy the same benefits and results from the programme as other participants, or do they face barriers to equal participation?This Quick Guide will help you to find an answer to these questions – and to take action – by following 9 steps throughout the programme cycle!
Key facts about persons with disabilities
Sexual and Reproductive Health (SRH) services include a range of services, from (formal or informal) sexuality education, to gynecology, access to contraceptives and more. All of these services must meet public health and human rights standards, following the Availability, Accessibility, Acceptability, and Quality framework of the right to health. However, SRHR does not only refer to the right to access particular health services, it also refers to the right to bodily autonomy and sexual pleasure. According to the Guttmacher–Lancet Commission, “sexual and reproductive health is a state of physical, emotional, mental and social well-being in relation to all aspects of sexuality and reproduction, not merely the absence of disease, dysfunction or infirmity. Therefore, a positive approach to sexuality and reproduction should recognize the part played by pleasurable sexual relationships, trust and communication in promoting self-esteem and overall well-being. All individuals have a right to make decisions governing their bodies and to access services that support that right.”
The UN Convention on the Rights of Persons with Disabilities gives the following definition of disability: a long-term physical, mental, intellectual or sensory impairment which in interaction with various barriers may hinder someone’s full and effective participation in society on an equal basis with others. Thus, a disability always consists of two elements: an impairment and the barriers in society. These barriers can concern social attitudes, communication, environment and/or institutions (laws and policies). Discrimination on the basis of disability is called ableism.
It is important to note that persons with disabilities are not a homogenous group and depending on the type/severity of disability and social location, lived experience can vary vastly from person to person. Moreover, disability is only one aspect of a person’s identity or experience. Every person has multiple identities, which intersect in varying ways, as shown by UNESCO’s diagram below. Intersectionality refers to the complex, cumulative way in which the effects of multiple forms of discrimination (such as racism, sexism, ableism and classism) combine, overlap, or intersect.
This overlap of different identities creates unique experiences of marginalisation, and exclusion from SRHR. For example, girls with disabilities in residential institutions are at increased risk of gender-based neglect, sexual abuse, violence, exploitation and trafficking. Additionally, violations of bodily autonomy happen frequently through forced sterilisation, contraception and abortion, due to concerns about menstrual hygiene management, as ‘protection’ against the consequences of sexual abuse, or due to prejudices regarding parenting skills. In Nepal, women with disabilities also raised the issue of added risks and difficulties during menstruation. The cultural practice of seclusion during menstruation brings them in a difficult situation, as Japrei explains: “I need help walking around. But since I become untouchable during the five days of my menstrual cycle, I have no one to help me.” Trans persons with a disability in India point out that the lack of attention to disability in transgender laws, and the lack of attention to gender diversity in disability laws, creates extra barriers for their access to healthcare, including transition surgeries. You can find more background information on intersectionality under ‘key resources’
Inclusive Sexual and Reproductive Health and Rights (SRHR) means that all people – no matter who they are – are able to fulfil their Sexual and Reproductive Health and Rights on an equal basis with others. This means that the particular barriers and risks people with disabilities face must be identified and removed. For this, people with disabilities, like their peers without disabilities, are ought to be seen as sexual beings with the right to bodily autonomy, pleasure, health and well-being. When Sexual Reproductive Health and Rights services are disability inclusive, people with disabilities are empowered to make their own decisions about their sexual and family lives.
To reach disability inclusive SRHR we need to follow a twin-track approach. This means 1) full inclusion and participation of persons with disabilities in general SRHR services and programmes and 2) specific attention and support for people with disabilities to empower them in participating on an equal basis with others. For example girls with intellectual impairments may benefit from receiving sex education in a group where only girls with intellectual disabilities participate. They will feel more at ease and the messages can completely be tailored towards their needs. Moreover, if you want to reach persons with disabilities who live in an institution or children who are going to special schools you will need to think of targeted actions to involve them in your programmes.
Legal & Policy Framework
International Covenant on Economic, Social and Cultural Rights (ICESCR)
Convention on the Elimination of all forms of Discrimination Against Women (CEDAW)
United Nations Convention on the Rights of the Child (UNCRC)
International Conference on Population and Development
International Conference on Women in Beijing
United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) – articles 9, 16, 22, 23 and 25
Sustainable Development Goals (SDGs) 2015-2030 – Leave No One Behind
Human Rights Council Resolution 47th session, L.18, Rev. 1 on accelerating efforts to eliminate all forms of violence against women and girls preventing and responding to all forms of violence against women and girls with disabilities
Steps Towards Disability Inclusive SRHR Programmes
Inclusion does not happen automatically, you have to deliberately plan for inclusion in your projects and programmes and tackle all the barriers that are blocking equal access to persons with disabilities. The following steps will help you to make your Sexual and Reproductive Health and Rights Programmes more disability inclusive. In the following chapters we will give specific tips and resources for every step.
- Promote meaningful participation of persons with disabilities and build up partnerships
- Understand and identify the barriers to access SRHR and collect baseline data
- Plan and budget for inclusion in SRHR
- Strengthen the capacity for disability inclusive SRHR
- Make information and education materials accessible and disability inclusive
- Mobilise persons with disabilities and use targeted actions to reach out to specific groups
- Lobby and advocate for disability inclusive SRHR
- Monitor & evaluate the inclusion of persons with disabilities in SRHR
- Work on inclusion at organizational level
The best moment to start working on disability inclusion is when SRHR policies and programmes are designed. Inclusion starts with promoting meaningful participation of persons with disabilities and their organisations in policy development and programme design. Only by their active participation the needs of persons with disabilities can be understood.
Before designing a programme it is important to understand and identify the barriers that women, men, girls, boys and gender nonconforming persons with different types of disability are facing in relation to SRHR. Partnerships with Organisations of Persons with Disabilities (OPDs) and disability specific organisations are important for this process. Based on this information you can plan and budget for inclusion in your SRHR programmes.
During implementation of your programmes it is important to train the programme staff on disability inclusion, so they know how they can remove barriers and provide inclusive SRHR services. It is also key to strengthen the capacity of OPDs with regards to SRHR where needed, for example by providing value clarification workshops on SRHR and related topics. They play an important role in mobilizing and informing persons with disabilities so a good understanding on the topic of SRHR is vital. To improve access of the services it is important to remove all the physical, communication and financial barriers.
In this Quick Guide we will give practical tips and examples eg. how to make health education materials accessible, how to develop communication tools to reach out to specific groups and how to enhance physical and financial access. When the barriers within the programme are removed it is also important to make sure persons with disabilities are really accessing the services, they need to be mobilized to come to the services and maybe targeted actions are needed to serve specific groups of persons with disabilities. In addition, support lobby and advocacy for disability inclusive SRHR.
During the implementation it is important to monitor the inclusion of persons with disabilities closely and adjust the programme where needed. In order to do this you will need to collect and analyse disability disaggregated data. And of course also in the evaluation you need to evaluate how persons with disabilities have benefited from the programme. The last step is to use the learnings to further improve the inclusiveness of new interventions and to anchor disability inclusion at organizational level as well. What to do if you want to start with disability inclusion in an SRHR programme that is already running? No worries, you can always take a first step. For example by collecting data about persons with disabilities when you are doing a survey, or simply start by doing an accessibility audit of your services. Or visit a local Organisation of Persons with Disabilities (OPD) during your next field visit. Or train your staff on disability inclusion. Or hire a staff member with a disability. Every little step matters!
Promote meaningful participation and build up partnerships
The credo of the UN Convention on the Rights of Persons with disabilities is: “Nothing about us without us”. This means that persons with disabilities and their representative organisations (OPDs) need to be involved in decision-making. But how to promote meaningful participation in policy development and how to involve persons with disabilities in all phases of the project cycle? Check out the toolbox and practical tips on the next pages.
Next to collaboration with OPDs it is key to work together with organisations with expertise on disability mainstreaming and those who offer disability specific services. Make use of their knowledge, networks and skills! To make a sustainable change, cooperation with the government health authorities is also important. Involve them right from the start to make sure you have their buy-in.
Keep in mind that SRHR is often a new topic for OPDs to work on. Although OPDs are aware of the rights of persons with disabilities, many OPDs are male-dominated and SRHR has been a relatively overlooked topic within the disability movement. Therefore, training on SRHR, including values clarification, might be necessary in building partnerships and for OPDs to mobilize their constituencies around this topic. You will find more tools on capacity building of OPDs under Step 4.
Some Practical Tips
Understand and identify barriers to access SRHR and collect baseline data
Before designing a programme it is important that you have a good understanding of the barriers that women, men, girls, boys and gender non-conforming persons with different types of disability are facing in relation to SRHR in general, as well as what type of barriers they face in accessing the SRHR services of your organisation. Besides conducting a context and barriers analysis, a needs assessment is vital. In this way, you get a clear idea of the needs of persons with disabilities that are currently not met in terms of SRHR services and information. It is a great addition to the barrier analysis as it makes the identification of gaps in the current situation more holistic and comprehensive.
In the formulation phase you will need to collect baseline data about persons with disabilities, their access to SRHR and their lived experiences in your project area. This is not always easy, because disability statistics are often not available or not very reliable. On the next page you will find tools and tips for the best ways to collect these data. You may also want to check DCDD’s Quick Guide Towards Disability Inclusive Programme Monitoring.
Common barriers that hinder persons with disabilities from accessing Sexual Reproductive Health services are:
- There are a lot of prejudices around people with disabilities: they are often sees as asexual, hypersexual, or not capable of feeling love and sexual desire. Consequently, it is believed that people with disabilities do not need information on their SRHR.
- These prejudices also lead to negative attitudes amongst health care staff towards persons with disabilities who come for services. They are often treated without respect.
- Health staff often don’t have the practical skills to provide services to persons with disabilities, or to effectively refer them to the required health services. They don’t know for example how to communicate with persons who are deaf.
- Persons with disabilities (and their family members) often have internalized the prejudices about disability and sexuality and may also belief that ‘this is not for me”.
- Persons with disabilities often cannot access health services because of inaccessible environments: stairs, narrow doors, rough terrain around clinics, inaccessible examination beds etc.
- Health information is often not provided in an accessible format for persons with diverse disabilities (e.g. sign language, easy-to-read, braille, pictures, audio).
- Privacy often cannot be guaranteed to persons with disabilities because of communication barriers.
- Persons with disabilities also experience financial barriers: they often don’t have a health insurance. They also have to deal with hidden costs: for example additional transport costs because public transport is often not accessible or they may need to pay someone to accompany them to the clinic.
- Laws, policies, programmes, and services are often not rights-based and disability-inclusive, so when Sexual Reproductive Health Programmes are designed, persons with disabilities are often excluded from participation in this process. The result is that their needs are not taken into account in the design of the programme
|Family Planning for Women and Girls with Disabilities||Disability Inclusion Helpdesk||This literature review gives a quick insight in the barriers within family planning for women and girls with disabilities and identifies good practices on increasing full free and informed contraceptive choice for women and girls with disabilities.|
|Let Me Decide and Thrive||Plan international||Want to learn more about the barriers girls with disabilities face when it comes to SRHR? This report gives a good overview and asks attention to Comprehensive Sexuality Education.|
|Barriers to Healthcare Services for People with Disabilities in Developing Countries: A Literature Review||Disability, CBR & Inclusive Development Baart & Taaka||Looking for an overview of available studies on barriers in access to mainstream (Sexual Reproductive) healthcare services for people with disabilities? Check this literature review.|
|From words to actions: systematic review of interventions||BMJ Global Health Hameed||Looking for evidence on what works in promoting disability inclusive services? This literature review lists it all down.|
|Sexual and Reproductive Health and Rights for All: Disability Inclusion from Theory to Practice||Humanity and Inclusion||Besides barriers, it is also important to know what are actually facilitators. Table 2 on page 20 of this publication, gives an overview of barriers and facilitators for persons with disabilities in fulfilling their SRHR rights|
|Inclusive Health Game||SeeYou/Light for the World||This interactive game is an eye-opener for health staff. It gives a quick insight in the most common barriers that persons with disabilities come across when accessing health services.|
|Intersectionality Based Policy Analysis tool [COMING SOON]||Make Way Consortium||Make Way Consortium’s Intersectionality-Based Policy Analysis (IBPA) tool helps you analyse policies related to sexual and reproductive health and rights (SRHR) and health systems through an intersectional lens.|
|Intersectional Community Score Card [COMING SOON]||Make Way Consortium||The Intersectional Community Score Card is a citizen-driven accountability measure for the assessment, planning, monitoring and evaluation of service delivery that takes different intersecting identities into account.|
|Accessibility Standard Audit Pack||Sightsavers||This tool by Sightsavers can be used to assess existing health infrastructure and helps guide the development of new health facilities. The pack provides step-by-step support on how to plan and implement the audit.|
|Sexual and Reproductive Health and Rights for All: Disability Inclusion from Theory to Practice||Humanity and Inclusion||Chapter 4.2 of this publication (page 50) provides guidance on key actions, do’s and don’ts when conducting a barriers assessment.|
|Accessibility Audit for Health Centres||SeeYou Foundation||Want to check the accessibility of a Health Centre or SRHR service location? This short checklist will be a helpful tool.|
|Disability Inclusion Score Card for Health Centres||SeeYou Foundation||Want to assess how inclusive your health service is? This scorecard will help you to identify the gaps.|
|Body Mapping||WHRU||Body mapping is used as a method in sexual and reproductive health and rights programs, to encourage the discussion of sex & sexuality, pleasure and pain, sickness and health and to understand individuals’ perceptions of their bodies. With the tool, respondents can indicate body parts without having to verbalize potentially embarrassing anatomical terms, and it enables interviewers to clarify ambiguous terminology that may have otherwise been open to misinterpretation.|
|Photovoice: Facilitators Guide||Rutgers||Photovoice is a participatory research methodology to assess the view or opinion of participants by photographing scenes relevant to the examined community or peer group. It is commonly used in the fields of community development, public health and education. Successfully used by Niketan and NLR Indonesia in a needs assessment by young people with disabilities.|
|Sexual Pleasure: An Assessment Tool||GAB||Although not focused on people with disabilities in particular, this text contains an assessment tool for sexual pleasure, something that is often neglected within Sexual and Reproductive Health and Rights Programmes and even more for people with disabilities. The tool can be used to strengthen SRH service delivery, sexuality education and sexual health programmes by touching upon the topic of sexual pleasure within Sexual and Reproductive Health and Rights.|
|How to conduct inclusive telephone questionnaires and focus groups||Humanity and Inclusion||Curious how to assess how people with disabilities have experienced the referral to SRHR services or other services like family planning or assistive devices? These questionnaires for telephone interviews and focus group discussions guide you through it. The tools can be found on page 156.|
Some Practical Tips
Plan and budget for inclusion in SRHR
Planning and budgeting for inclusion is vital in order to ensure your proposal is inclusive. If you don’t deliberately plan for disability inclusion in a programme, it is not going to happen. But what activities do you need to plan and how much budget will be needed?
Make sure there is budget and time for:
- Cooperation with OPDs (for transport, communication etc.)
- Capacity development of programme staff, OPDs and health workers on disability inclusion.
- Modification of health facility infrastructure, accessible toilets, ramps, etc.
- Developing inclusive information materials (braille, easy read versions, pictorial information etc)
- Providing inclusive communication options.
- Organising outreach activities & targeted action.
- Training and hiring persons with disabilities as professional health service providers or community volunteers and cover the costs for reasonable adjustments, transport costs, software programmes for a blind person, sign language interpretation for a deaf person, etc
Some Practical Tips
Strengthen the capacity for disability inclusive SRHR
It is important to train programme staff on disability inclusion, so they know how they can remove barriers and provide inclusive SRHR services. Biases and stigma around disability and sexuality often prevent persons with disabilities from adequately accessing Sexual and Reproductive Health and Rights programmes and services. It is thus crucial to train your staff on recognising their (unintentional) biases to make sure that people self-reflect on ableism and realise why disability justice and inclusion is needed. Additionally, the topic SRHR is subjected to stigma and taboos as well. Doing a values clarification on establishing professional or organizational values towards SRHR before starting a program is a vital element in capacity strengthening. It is also key to strengthen the capacity of the organisations of Persons with Disabilities with regards to SRHR, this will help them to play an active role in mobilizing their constituency to access the services. Train local health authorities as well, because they will play an important role in bringing about a structural and lasting change.
Some Practical Tips
Make information and education materials accessible and disability inclusive
To improve access of the services it is important to remove all communication barriers. In step 4 we already shared resources how to train staff on disability inclusion communication, but in addition to this it is also very important to make health education materials accessible for persons with disabilities. This does not only mean that for example persons who are blind can access information, but also that persons with disabilities are represented in the education materials. You may also need to develop communication tools that help you to reach out to specific groups. For example to persons who are deaf or to persons with intellectual impairments. In the resources we have added some practical examples of disability inclusive health materials.
Some Practical Tips
Mobilise persons with disabilities and use targeted actions to reach out to specific groups
If the SRHR services are made accessible, it does not automatically mean that persons with disabilities will also find their way to access these services. Based on bad experiences in the past, they may be reluctant to come. Or as the result of internalized barriers, they may think the services are not for them. Or they may not have access to transport or have money to pay for the services. Or maybe their family members do not allow them to go. It is therefore important to actively reach out to persons with disabilities and mobilize them to come for the SRHR services.
Furthermore, raising awareness in order to change social norms about SRHR and to combat the stigma and taboos present around SRHR for persons with disability is critical. This means, working with communities and their leaders, but also with families of persons with disabilities is evident in achieving SRHR for persons with disabilities.
Next to mainstreaming disability inclusion into SRHR programmes is also good to realise that specific groups sometimes need a tailored approach: e.g. girls with intellectual disabilities often feel more comfortable and safe if they can discuss about this in a group with only girls with intellectual disabilities. Also, children and adults with disabilities do not always live in the community but may be residential in a special school or care home, so it takes a specific effort to reach out to them.
Some Practical Tips
Investing in lobby, advocacy and research is crucial to achieve comprehensive and disability inclusive SRHR. As for any SRHR programme, championing for its relevance and importance by governments, institutions and policy makers gives a higher chance of achieving the desired outcome.
In addition, it is very important to note that advocacy is needed around the unique challenges that people with disabilities face. Topics such as prenatal screening, forced sterilization and informed consent through supported decision-making have until now received far too little attention from feminist movements worldwide. You will find resources on these topics in the toolbox on the next page.
Some Practical Tips
Monitor & evaluate the inclusion of persons with disabilities in SRHR
Most Sexual and Reproductive Health and Rights programmes have knowledge of and experience with how to go about monitoring their projects. Thus, monitoring inclusion might actually be a lot easier than you think! Although the process has many overlaps with other well-known monitoring tools, we have listed a few below that specifically take the measurement of inclusion into consideration. In SRHR programs, a special emphasis should be put on gathering disaggregated data. Capturing disability disaggregated data within health services allows for better information for planning. However, no information or data should ever be collected or used without the prior and informed consent of persons with disabilities. Data protection systems must be in place and trust building should happen before data collection takes place.
Some Practical Tips
Work on inclusion at organizational level
Disability inclusive programmes thrive best in inclusive organisations. You can use the experiences of the disability inclusion to anchor disability at organizational level as well.
Some Practical Tips
This quick guide has been developed by the Dutch Coalition on Disability and Development (DCDD) and Liliane Foundation in collaboration with: Niketan, Rutgers, Sharenet, Royal Tropical Institute, Make Way, SeeYou Foundation, CHOICE for Youth and Sexuality, Kentalis, NLR and Results in Health.
Special thanks to Kim Brands and Laura Honders for the initial research and writing, Paulien Bruijn (Into Inclusion) for guiding the process and to Sanne Lukkien for the design. Please also check our other Quick Guides on Inclusive Education, Disability Inclusive Humanitarian Action and Disability Inclusive Programme Monitoring.