The Foundation recently convened learning exchanges with civil society leaders working on health and disability rights—particularly the rights of vulnerable populations who have been ‘left behind’. The participants, who hailed from 11 Commonwealth countries and had each received support from our grants programme, shared strategies and approaches to realise these rights by making governments more accountable; this is the third in a series of blogs profiling the case studies our partners shared.
The evidence is unambiguous: vulnerable and marginalised groups—including women and girls, the poor, and persons with disabilities (PwDs)—are very far from achieving the promise of universal health coverage. And much remains to be done before we come close to realising the globally agreed Sustainable Development Goal of ensuring healthy lives and wellbeing for all. It is significant that the estimated one billion PwDs in the world continue to be denied equitable participation in society due to prevailing material and attitudinal barriers. They face higher rates of multidimensional poverty, lower educational attainment and rates of employment, and poorer health outcomes. The COVID-19 pandemic has exacerbated these inequalities.
Civil society plays a critical role in promoting and protecting health and disability rights. Civil society groups can, for example, hold their governments to account in respect of rights enshrined in national legislation and the constitution. International treaties can also provide a valuable framework for advocating for improved protection of rights including through changes to domestic law and policy.
Alternative reports to the international treaty bodies
The Shanta Memorial Rehabilitation Centre (SMRC) has been gathering grassroots data on disability for years in partnership with civil society organisations throughout India. Their data is consistent with the UN’s findings: women with disabilities face more obstacles than their male counterparts and struggle to access ‘adequate housing, health, education, vocational training and employment’.
In 2019, SMRC and its partners submitted an alternative report to the UN Committee on the Rights of Persons with Disabilities (CRPD). This is a process which enables civil society to provide an alternative point of view to the official reports submitted by governments under international treaties. The report, which was presented by a group of women with disabilities, contained 33 recommendations. It detailed what they were seeing on the ground in relation to Article 6 of the Convention on Persons with Disabilities, which relates specifically to women. They also included data on 15 other articles that intersect with Article 6, on the Right to Life, Access to Justice, Education, Health and Employment, and Freedom from Violence.
Their data identified nine major barriers faced by women with disabilities including discriminatory attitudes and low standards in service provision, challenging the Indian Government’s data on this point. Many of the report’s findings and recommendations were cited when the CRPD reported back to the Indian Government at the conclusion of the review process.
The report, along with the remarks of the committee, were later disseminated to communities and disabled persons organisations in India. SMRC provided training on how to use the documents for advocacy purposes, thereby helping to create a groundswell of grassroots campaigning. Hundreds of people with disabilities are now reaching out to officials in their own states and pressing for change. Some trainees have even approached the courts where they feel government action is either not forthcoming or too slow.
Review and reform
Research that took place in 2012-13 found that mental health legislation in the Seychelles and Botswana was outdated and ignored advances in care and treatment, denying those living with mental health problems their basic rights. The Commonwealth Nurses and Midwives Federation and its partners established a National Mental Health Advisory Committee (NMHAC) in each country that involved civil society representatives and government officials. The job of these committees was to review existing legislation, prepare guidelines for law reform, and educate stakeholders and the public on mental health issues.
‘the central mental health law was focussed on keeping the mentally ill in custody and excluding them from society’
In the Seychelles, the government had ratified the Convention on Persons with Disabilities (CRPD). The job of the newly-formed Committee was, therefore, to help ensure domestic legislation was up to the new standard agreed to by the government through its ratification of the treaty. The Committee’s review revealed substantial gaps and weaknesses and it confirmed that new domestic legislation was required. A new mental health act went before Parliament in 2018 and was enacted into law in the National Assembly in May 2020.
Unlike the Seychelles, Botswana has not become party to the CRPD. However, Botswana’s constitution affirms the right to life, to personal liberty and freedom, as well as freedom from inhumane treatment and discrimination. The National Mental Health Advisory Committee’s analysis identified numerous violations of these fundamental rights. Because the central mental health law was focussed on keeping the mentally ill in custody and excluding them from society, the Committee decided that it could not be reconciled with a rights-based approach. In response, and using drafting instructions provided by the Committee, the Attorney General drafted a new mental health bill that will soon go before Parliament.
Where collaboration and dialogue do not work, civil society may use litigation to ensure governments implement their legal commitments. In 2015, the Kenyan government issued a Presidential directive for district education departments to collect the names of HIV positive school children and their guardians. Although the Directive was aimed at delivering more effective care, it exposed children to potential discrimination that could cause real hardship and adversely affect educational outcomes.
‘it exposed children to potential discrimination that could cause real hardship and adversely affect educational outcomes’
Community representatives wanted safeguards to be put in place to protect individuals from having their HIV status known in this way. Efforts to lobby the government to change the Directive were unsuccessful. The Kenya Ethical Legal Issues Network on HIV and AIDS (KELIN), alongside a child rights agency and the families of two children living with HIV, brought a case against the government arguing that the Directive violated fundamental rights and freedoms in contravention of the Kenyan constitution.
The High Court of Kenya ruled that the Directive did indeed breach the right to privacy and was in violation of the overarching guiding principle of the ‘best interests of the child’. It ordered all data to be anonymised so a person’s name could not be linked to their HIV status. In partnership with community leadership, KELIN continues to advocate for legal compliance with the court ruling, providing awareness-raising for schools and supporting schools’ efforts to help children living with HIV.
Next month in our blog series on health and disability rights accountability, we look at how our partners build multi-stakeholder coalitions to achieve their advocacy goals.
Dr Shobha Das is a former Director of Programmes at Minority Rights Group International and Gillian Cooper is the Programme Manager of Knowledge, Learning, and Communications at the Commonwealth Foundation.