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What are some examples of effective human rights programming in the area of minority health, in particular the Roma and San communities?
Introduction
In this section, you are presented with four examples of effective activities addressing health and human rights in minority communities. These are:
- Justice for Roma women coercively sterilized in central Europe
- A shadow report on women’s double discrimination in Serbia
- San health care through rights protection and community participation in Namibia
- Health and human rights nexus: mediators and monitors in Romania
Rights based programming
As you review each activity, as yourself whether it incorporates the five elements of “rights-based” programming:
- Participation
Does the activity include participation by affected communities, civil society, marginalized groups, and others? Is it situated in close proximity to its intended beneficiaries?
- Accountability
Does the activity identify both the entitlements of claim-holders and the obligations of duty-holders? Does it create mechanisms of accountability for violations of rights?
- Non-discrimination
Does the activity identify who is most vulnerable, and how? Does it pay particular attention to the needs of vulnerable groups such as women, minorities, indigenous peoples, and prisoners?
- Empowerment
Does the activity give its beneficiaries the power, capability, capacity, and access to bring about a change in their own lives? Does it place them at the center of the process rather than treating them as objects of charity?
- Linkage to rights
Does the activity define its objectives in terms of legally enforceable rights, with links to international, regional, and national laws? Does it address the full range of civil, political, economic, social, and cultural rights?
Finally, ask yourself whether the activity might be replicated in your country:
- Does such an activity already exist in your country?
- If not, should it be created? If so, does it need to be expanded?
- What steps need to be taken to replicate this activity?
- What barriers need to be overcome to ensure its successful replication?
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Example 1: Justice for Roma women coercively sterilized in Central Europe
The European Roma Rights Centre, a Roma NGO, and a Roma victim advocacy group worked together on a litigation and advocacy campaign to secure public recognition and compensation for harms suffered by coercively sterilized Roma women.
Project type
Ombudsman compliant; Litigation; CEDAW Committee advocacy
Health and human rights issue
From the 1970s until 1990, the Czechoslovak government sterilised Roma women programmatically aiming to reduce the “high, unhealthy” birth rate of Roma women. Coercive sterilization has been documented as late as 2004. Cases have also occurred in Hungary, Romania, and Slovakia. Hundreds of Roma women await justice.
Actions taken
- In 2004, The European Roma Rights Center (ERRC), and Life Together, a Roma-Czech NGO, documented cases of coercive sterilization and filed complaints with the Ombudsman—the Czech Public Defender of Rights.
- In 2005, Roma women established a Czech victim advocacy group, the Group of Women Harmed by Sterilisation (GWHS), to push the government and medical authorities for a formal apology and to establish a compensation fund.
- GWHS used demonstrations and awareness campaigns, and in 2006, a member testified before the CEDAW Committee.
- In 2004, ERRC helped file a complaint with the CEDAW Committee on behalf of a Hungarian Roma woman, coercively sterilized when she sought treatment for a miscarriage.
Results and lessons learned
- In 2005, the Ombudsman undertook an investigation and published a report recognizing coercive sterilization and racial targeting in the Czech medical community. The report recommended changes in domestic law to ensure informed consent and the simplification of compensation procedures.
- The Ombudsman also filed 54 criminal complaints with the local prosecuting office, but many have been dismissed.
- The 2006 CEDAW report to the Czech government expressed concern over cases of coercive sterilization and recommended the adoption of legislative changes to ensure informed consent and victim compensation.
- In 2006, the CEDAW Committee found Hungary in violation and likewise called for informed consent and compensation legislation.
- International treaties and standards were critical to the litigation to complement the scant domestic laws relevant to patients’ rights.
- Patients whose rights have been violated are the best advocates for change. Collaborations between legal service providers, patient advocates, and Roma activists brought attention to the matter and helped address larger issues.
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Example 2: A shadow report on Roma women’s double discrimination in Serbia
The European Roma Rights Centre and six Serbian NGOs partnered to gather data on double discrimination faced by Roma women in Serbia. They submitted a shadow report to the UN CEDAW Committee, bringing attention to these issues and launching an advocacy campaign.
Project type
Human rights documentation; International advocacy
Health and human rights issue
Roma women living in Serbia face double discrimination as female members of an ethnic minority. This is a leading factor responsible for their significantly lower health status, as compared with the majority population. Roma and health activists have recognized domestic violence, access to health insurance, and discrimination in health care settings as major issues affecting Roma women’s health. However, little data and documentation existed to bring these concerns to human rights monitors.
Actions taken
- In 2006-2007, six women from the European Roma Rights Centre (ERRC) and the Roma Serbian NGOs: Bibija, Eureka, and Women’s Space undertook research to document abuses against Roma women.
- This NGO partnership then submitted a shadow report to the CEDAW Committee, which will be presented at Serbia’s May 2007 review.
Results and lessons learned
- Less than half of the 198 women interviewed agreed to talk about domestic violence. Of the remaining 81 women, the majority experienced domestic violence. Issues particular to Roma women included police non-responsiveness or an inappropriate response due to discriminatory attitudes and criteria at safe-houses disproportionately excluding Roma women.
- Discrimination against Roma women is especially evident in most commonly used health services—in the areas of reproductive and maternal health and emergency care.
- Project partners hope to follow up on research findings with advocacy on the most pertinent and strategic issues.
- A partnership between an international human rights organization, well-versed in the CEDAW process, and local NGOs with an understanding of the community can be particularly effective.
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Example 3: San health care through rights protection and community participation in Namibia
Health Unlimited has worked in partnership with remote San communities and the Ministry of Health in Namibia to ensure the provision of basic health services through community education and participation in health care delivery.
Project type
A rights approach to the delivery of health services
Health and human rights issue
In recent years, the growing threat of HIV and AIDS is combining with TB and malaria to present a real threat to San survival. San access to basic health care is constrained by financial, geographic, and cultural barriers. Moreover, rural communities are low on governments’ priority lists as services in remote areas are difficult and costly to provide. Where services are available, the San are often reluctant or afraid to use them due to staff discrimination and insensitivity.
Actions taken
- Health Unlimited (HU), an international NGO, is working in partnership with the San in Omaheke and Otjozondjupa (“Bushmanland”) and the Namibian Ministry of Health to help ensure basic health services in these remote communities and access to state health care.
- The partnership established Namibia’s first community based screening and treatment programmes for TB. Trained San volunteers help identify and treat patients in their villages, eliminating the need for treatment at clinics many miles away.
- The partnership also initiated a health training program for Community Based Resource Persons, or volunteers acting as a link between local health services and communities to facilitate communication and ensure needs are met.
- In 2006, the partnership started a project to improve San adolescent sexual and reproductive health in the remote Omaheke and Tsumkwe regions. Village health committee representatives, teachers, and peer counsellors will be trained to encourage discussions in the local community on adolescent health, STIs, and HIV and AIDS and to help reduce stigma and discrimination against those affected.
Results
- The community based screening and treatment program for TB has led to an over 80% cure rate.
- The Community Based Resource Persons were able to create a mutually supportive relationship in communities where before there was antagonism and mistrust.
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Example 4: Health and human rights nexus: mediators and monitors in Romania
Romani CRISS developed a program in Romania whereby health mediators helped improve communications between the Roma community and health providers and referred cases of abuse and discrimination in health facilities to human rights monitors for documentation and legal advocacy.
Project type
Human rights documentation and advocacy
Health and human rights issue
Roma are disproportionately excluded from accessing health care services and encounter prevalent discrimination by providers. In a 2005 survey among 717 Romanian Roma women, 70% reported discrimination from health providers based on their race/ethnicity. Particular problems faced by Roma women include coerced sterilization and separate maternity wards. There is no administrative mechanism to address these abuses against the Roma and other vulnerable groups.
Actions taken
- In the early 1990’s, the Romanian human rights NGO, Romani CRISS, developed a health mediator program to facilitate Roma access to health care. Mediators are from Roma communities but situated in health clinics to improve communications with providers. They educate communities on how to access health services and sensitize doctors on Roma health needs.
- Romani CRISS also has a network of human rights monitors responsible for documenting cases of discrimination and violence against Roma.
- In 2007, Romani CRISS initiated a program to create a link between health mediators and the human rights monitors. Health mediators were trained in human rights and human rights monitors were trained in health issues. This way, the mediators knew to refer cases of discrimination or abuse to the monitors for documentation, and they could also sensitize communities on human rights issues. The monitors would then document cases of discrimination in health care settings and bring them for redress before the National Council to Combat Discrimination, the College of Physicians, and other institutions.
Results and lessons learned
- Currently, approximately 200 mediators work in 39 communities and 20 human rights monitors in 15 counties.
- The roles of health mediators and human rights monitors must be kept separate to maintain the independence of monitors and mediators’ facilitating role with health service providers. This separation is particularly important as the Ministry of Health has funded many of the mediators since 2006.
- Legal advocacy work must be combined with an effective outreach and advocacy campaign targeted at policy makers and the public.
