Letter to United Nations CRPD on Half Day of General Discussion on Women and Girls with Disabilities

Re: Half Day of General Discussion on Women and Girls with Disabilities

We write in advance of the upcoming Committee on the Rights of People with Disability (Committee) Half Day of General Discussion on Women and Girls with Disabilities to highlight areas of concern that we hope will inform your discussion of these issues.

This submission outlines violations of the rights of women and girls with disabilities in contravention of Articles 12, 15, 16, 23 and 25 of the Convention on the Rights of Persons with Disabilities (CRPD). This submission is based on our reports, “As If We Weren’t Human: Discrimination and Violence against Women with Disabilities in Northern Uganda”[1] and “Illusions of Care: Lack of Accountability for Reproductive Rights in Argentina”[2], both published in 2010, and advocacy materials we have developed on women and children with disabilities, and sterilization of women with girls with disabilities.[3] While this submission is not exhaustive of all issues facing women and girls with disabilities, we hope to highlight the multiple-discrimination they experience, based on their disability, age and gender.

This submission highlights four key areas of concern which we wish to bring to the Committee's attention:

1.      Sexual and gender-based violence against women and girls with disabilities

2.      Barriers to access to justice

3.      Discrimination in health and reproductive rights

4.      Discrimination in HIV services and education

1.      Sexual and Gender-based Violence Against Women and Girls with Disabilities (Article 16)

Article 16 of the CRPD requires that governments take all appropriate legislative, administrative, social, educational and other measures to protect persons with disabilities, both within and outside the home, from all forms of exploitation, violence and abuse, including their gender-based aspects. Article 16 also requires that governments put in place effective legislation and policies, including women- and child-focused legislation and policies, to ensure that instances of exploitation, violence and abuse against persons with disabilities are identified, investigated and, where appropriate, prosecuted.

One fundamental concern is the lack of reliable data on the number of women and girls with disabilities who experience sexual and gender-based violence. This data is crucial in order for governments and UN agencies such as the United Nations Population Fund (UNFPA) to develop appropriate programs and services for this marginalized and vulnerable population. A number of international and treaty bodies, including the UN Secretary General, have commented on the general lack of data on violence against women and girls, an issue that is need of attention through the collection of disaggregated data.[4]

According to a number of studies, it is estimated that women with disabilities are 1.5 to 10 times more likely to be abused, either physically or sexually, by a family member or caregiver than women without disabilities.[5] The World Health Organization estimates that children with disabilities are 4 to 5 times more likely to experience violence and sexual abuse than non-disabled children.[6] Women and girls with disabilities face a heightened risk of physical and sexual violence, including rape, because of perceptions that they are less able to defend themselves or demand justice for violations. Other factors include social exclusion, limited mobility, lack of support structures and communication barriers. Women with disabilities are often trapped in abusive relationships because they may be dependent on caregivers or others and due to their very real poverty.

States have a duty to implement measures to prevent violence committed by both public and private actors against women and girls with disabilities. However, programs aimed at the prevention of gender-based violence in general are lacking,[7]and where such programs exist,  they rarely include women and girls with disabilities, especially those with psychosocial or intellectual disabilities. Research has pointed to the lack of education about issues related to violence against women and girls with psychosocial or intellectual disabilities as one important obstacle to maintaining safety, especially in the context of interpersonal violence.[8]Community-based victims’ services agencies, including sexual abuse programs, shelters, and other crisis programs where they exist, as well as police departments, often lack the capacity to adequately serve women with intellectual or psychosocial disabilities in particular.[9]In addition, the lack of oversight of institutions for persons with disabilities means that abuses against women and girls with disabilities often remain hidden from the public, and women and girls who reside in such institutions are often isolated and therefore have difficulty accessing services and support.

We ask the Committee to urge governments to:

-          include data on women and girls with disabilities who experience gender-based violence in the collection of data on all forms of gender based violence

-          consult women and girls with disabilities about their experiences of sexual and gender-based violence and in accessing services and counseling; and use this information to develop or strengthen existing programs and services

-          develop comprehensive and far-reaching prevention programs, including public education programs to reduce violence against people with disabilities.

                2. Barriers to access to justice (Article 13)

Article 13 of the CRPD requires governments to ensure effective access to justice for persons with disabilities on an equal basis with others, including through the provision of procedural and age-appropriate accommodations, in order to facilitate their effective role as direct and indirect participants in all legal proceedings, including at investigative and other preliminary stages. Under article 13, governments must also promote appropriate training for those working in the field of administration of justice, including police.

One important aspect of facilitating access to justice for women and girls with disabilities is therefore the need to make accommodations in all legal proceedings, in order to enable persons with disabilities to participate fully and equally in the process, whether as complainant, defendant, or witness. These include physical and communication needs such as ramps, accessible podiums, sign language interpretation, and Braille and large print text of court documents. This also involves training of law enforcement and legal professionals in how to communicate respectfully and interact with persons with disabilities, particularly women.

Because of the stigma associated with rape, women and girls may find it difficult to report such crimes.^[10] Compounded by the stigma associated with disability, women and girls with disabilities are rarely comfortable reporting sexual violence to the local authorities. The process of reporting violence is made more difficult because of long distances to travel from remote areas, a lack of accessible transport to police posts, or lack of assistance with communication barriers (such as sign-language interpreters).[11]

In a Human Rights Watch investigation conducted in northern Uganda, over one-third of 64 women and girls with disabilities interviewed by Human Rights Watch reported that they had experienced some form of sexual and gender-based violence, including rape.[12] Several women with disabilities interviewed also indicated that they had tried to seek justice for sexual and gender-based violence but failed.[13] For example, one woman with communicative and physical disabilities had been raped while her husband was away from home, and had previously been beaten by her husband. Because of her limited physical mobility and communication, she had little recourse and almost no ability to report the assaults.[14] In other cases, women with disabilities who have experienced violence in northern Uganda have been encouraged to report assaults to local councilors instead of police because of mobility or communication barriers in accessing police services. However, instead of investigating as police would and bringing charges, councilors often attempt to negotiate or mediate between the parties, resulting in no change in behavior or continued violence and abuse.[15]

Because of the stigma associated with reporting sexual and gender based violence and the fact that the perpetrators are sometimes members of the family, the presence of an accompanying family member may discourage women and girls with disabilities from coming forward. In the case of deaf women and girls, particularly those in rural areas, many do not know formal sign language and communicate only through local signs, which mainly their close family members understand.[16]

We ask the Committee to urge governments to:

-          ensure that access to justice is available for all women and girls, including those with disabilities

-          improve procedures for reporting violence experienced by women with disabilities, including by improving police responses and facilitating communication between women with disabilities and authorities

-          review national laws and procedures related to access to justice and undertake reform in line with the CRPD

      3.      Discrimination in Health and Reproductive Rights (Articles 12, 15, 23 and 25)

Article 23 of the CRPD provides that people with disabilities have the right to found and maintain a family and “to retain their fertility on an equal basis with others.” By recognizing that people with disabilities enjoy legal capacity on an equal basis with others in all aspects of life, Article 12 of the CRPD also ensures that people with disabilities can make their own choices, with support when necessary, including with respect to fertility and medical choices. In addition, Article 25 clearly articulates that free and informed consent should be the basis for providing health care to persons with disabilities. Medical procedures performed without consent can constitute a form of torture or other cruel, inhuman or degrading treatment, in contravention of Article 15 of the CRPD.

Sterilization is an irreversible medical procedure with profound physical and psychological effects. Involuntary sterilization occurs when a person is sterilized after expressly refusing the procedure, without her knowledge or is not given an opportunity to consent. Involuntary sterilization is an act of violence, a form of social control, and a violation of the right to be free from torture or other cruel, inhuman or degrading treatment.

Involuntary sterilization continues to be practiced on women and girls with disabilities in numerous countries throughout the world for a variety of reasons, including eugenics-based practices of population control, menstrual management and personal care, and pregnancy prevention (including pregnancy that results from sexual abuse).[17] In many countries, governments, legal, medical and other professionals and carers continue to debate and justify the practice of involuntary sterilization as being in the “best interests” of women and girls with disabilities.[18] It must be acknowledged that the decision to sterilize is often not arrived at lightly by family and caregivers, and is often made with good intentions. However, arguments for their “best interests” often have little to do with the rights of women and girls with disabilities and more to do with social factors, such as avoiding inconvenience to caregivers, the lack of adequate measures to protect against the sexual abuse and exploitation of women and girls with disabilities, and the lack of adequate and appropriate services to support women with disabilities in their decision to become parents. Many women and girls with disabilities face difficulties in understanding or communicating what was done to them, increasing their vulnerability to forced sterilization. A further aggravating factor is the widespread practice of legal guardians or other making these life-altering decisions on behalf of people with disabilities, or consenting to medical procedures on their behalf.

Sterilization should never be used as a substitute for proper education about family planning, the use of reversible contraceptive measures, and support during menstruation. Governments have an obligation under the CRPD to ensure access to these services and to prevent this violation of the rights of women with disabilities. Such measures include making sexual education and parenting programs available and accessible, providing the necessary personal assistance and support services in the community that will reduce the risk of sexual abuse, monitoring closed settings in which women and girls with disabilities are often placed (such as orphanages, psychiatric hospitals, and institutions), and providing alternative methods of contraception which are not irreversible or as intrusive as sterilization.

In many countries, women with disabilities are particularly impacted by ignorance on the part of health care personnel about their health care needs.^[19] During our research in northern Uganda, for example, we spoke with one young deaf mother in Lira who had been advised by nurses to conceive naturally and to avoid birth control, stating erroneously that birth control would result in the birth of a child with a disability. As a result, the woman stopped taking birth control. When the doctor advised her to begin birth control after she gave birth, the nurses discouraged her again.^[20]

In other instances, women with disabilities face negative attitudes by health care personnel, including instances of verbal abuse for getting pregnant. Human Rights Watch documented discriminatory practices among reproductive health care providers in northern Uganda. In one case a nurse admonished a woman with a physical disability who was unable to climb onto a bed for examination, saying “How did you get on the bed where you got pregnant?”^[21] More generally, existing clinics in Uganda cannot currently accommodate women with physical disabilities as a result of a lack of appropriate beds for delivering babies.

Similarly, in research in Argentina in 2010, Human Rights Watch found that women and girls with disabilities were all but invisible in the reproductive health system. At the time, this invisibility was reflected in the meager logistical measures to accommodate women and girls with disabilities to the system. There was a lack of accessible information produced about contraception and HIV, and for women with physical disabilities, hospital buildings and facilities were often inaccessible.[22] In its report to the CRPD Committee in April 2012, the government reported that it has taken some measures to improve the provision of sexual and reproductive health information and services for women and girls with disabilities in recent years.[23]

In order to address past grievances and correct systemic failure to prevent harm, accountability mechanisms must be implemented, such as regular monitoring of the health system and the underlying physical and socio-economic determinants of health that affect an individual’s health and ability to exercise their rights.^[24] States should develop “appropriate indicators to monitor progress made, and to highlight where policy adjustments may be needed.”^[25]  Monitoring helps states parties develop a better understanding of the “problems and shortcomings encountered” in realizing rights, providing them with the “framework within which more appropriate policies can be devised.” ^[26]

Monitoring is also a basic component of the state obligation to adopt and implement a national public health strategy and plan of action, including right to health indicators and benchmarks by which progress can be closely monitored.^[27] Data based on appropriate indicators should be disaggregated on the basis of gender and disability in order to monitor the elimination of discrimination, as well as ensure that vulnerable communities are benefiting from healthcare schemes.^[28]

In its upcoming discussion, Human Rights Watch asks the Committee to urge governments to:

-          ban the practice of forced sterilization of all women and girls, including those with disabilities;

-          ensure that reproductive health services are available and accessible for women and girls with disabilities, including through physical access, adequately trained staff, transportation and dissemination of information about the services in accessible formats;

-          combat stigma and discrimination against women with disabilities through awareness raising and media campaigns on the right to sexual and reproductive health for all women;

-          ensure that decisions about fertility and health care are made by women and girls with disabilities exercising free and informed consent;

-          adopt accountability mechanisms to correct past and future grievances and instances of discrimination;

-          collect disaggregated data on the basis of gender and disability in order to monitor the elimination of discrimination against women and girls with disabilities in health and reproductive rights.

       4.      Discrimination in HIV services and education (Article 25)

Article 25 of the CRPD calls for the “highest attainable standard of health without discrimination on the basis of disability”. Article 25 also requires that health services for persons with disabilities be “gender-sensitive” while providing “the same range, quality and standard of free or affordable health care and programs as provided to other persons, including in the area of sexual and reproductive health and population-based public health programs”, and calls on governments to “provide these health services as close as possible to people’s own communities, including in rural areas”.

A 2004 World Bank study suggests that persons with disabilities globally are infected with HIV at a rate of up to three times greater than non-disabled people.[29] Women and girls with disabilities are particularly vulnerable to HIV infection, and especially unlikely to have access to retroviral drugs.[30] All of the risk factors associated with HIV are compounded for women with disabilities: poverty, stigma, inability to negotiate safe sex, increased risk of violence and rape, and lack of access to services and information.[31]

In Northern Uganda, Human Rights Watch found that women and girls with disabilities faced stigmatizing beliefs as well as discrimination in health care. Many Northern Ugandans believe that women and girls with disabilities are asexual and therefore cannot be infected, or even that sex with a woman with disability can cure AIDS.[32]

Women with disabilities are frequently abandoned by their partners, and each new partner brings a heightened risk of HIV infection. In Northern Uganda, women with disabilities reported heightened difficulties in accessing health clinics after being raped due to mobility restrictions, uncooperative hospital staff, and attitudes of healthcare personnel who are sometimes hostile toward women with disabilities and make derogatory remarks.[33]

People with disabilities are often shut out of education, including on sexual health. They are considered a distraction in schools, or incapable of learning. In many parts of the world, children with disabilities do not go to school because schools are physically inaccessible. It is commonly assumed that individuals with disabilities are not sexually active, but research shows that they are as likely to be as sexually active, and engage in the same kinds of sex (including homosexual sex) as their non-disabled peers. A disability advocate living with HIV in Zambia told Human Rights Watch how misguided attitudes about sexual practices of people with disabilities prevented them from accessing vital information, as service providers often believed that it was not necessary to give HIV and family planning information to people with disabilities as they did not have sex.[34] Because of these attitudes, people with disabilities are less likely to receive information about HIV prevention and safe sex, and are less likely to have access to prevention methods such as condoms.

Confidentiality in HIV testing is especially problematic for the deaf or people with communication barriers, who may be forced to bring a family member to interpret the results. The availability of health center staff trained in sign language would be an important step towards expanding voluntary counseling and testing among the deaf.^[35]

Strategies to reduce the risk of HIV transmission from mother to child may be especially difficult for women with disabilities. Aside from initial difficulties in accessing the necessary drugs for prevention of mother-to-child transmission, delivering in a health center or hospital may not be an option for women with restricted mobility, and the enduring poverty associated with disability may make formula feeding difficult.^[36]

Human Rights Watch asks the Committee to urge governments to:

-          ensure HIV services, including testing centers, care services, and teaching and training sessions are fully accessible to women with different types of disabilities. This includes providing sign language interpretation, easy-to-understand information materials, Braille resources and ensuring that the services are physically accessible;

-          provide information about HIV and sexual health in formats tailored to women with different disabilities;

-          promote and fund research on HIV and disability, ensuring that persons with disabilities are included in the team designing, implementing and analyzing the research.

* * *

We hope you will find the comments in this letter useful and would welcome an opportunity to discuss them further with you. Thank you for your attention to our concerns, and with best wishes for a productive session.

Sincerely,