Disability Rights Advocacy: A Glimpse of Success

"It means a great deal to those who are oppressed to know that they are not alone. Never let anyone tell you that what you are doing is insignificant." Desmond Tutu, South African civil rights activist

By Ollie King

The struggle for the realisation of human rights values across the world is far from isolated. Since the Universal Declaration of Human Rights (UDHR) was widely accepted by the world’s nation states in 1948, the United Nations (UN), human rights groups, non-governmental organisations (NGOs), and their advocates have become the frontline in effecting change in problem areas. This type of advocacy seeks to influence decisions within political, economic, and social systems and institutions for the betterment of human rights standards across a plethora of issues. Crucially, human rights advocacy gives a voice to those who may not have the strength or resources to stand up and change things for themselves.

A group particularly in need of public awareness and advocacy are persons with disabilities. More than one billion people (15% of the world’s population) live with disabilities, yet their presence on the world stage has been almost invisible until recently. Governments have typically ignored this vulnerable, but nonetheless substantial, group of people when considering national policy, issues of legal capacity, and political participation. As a result, persons with disabilities face significant barriers to realising their human rights. These include discrimination in education, employment, housing and transport; denial of the right to vote; and being stripped of the right to make decisions about their own lives, including their reproductive choices. Individuals with physical, sensory, intellectual and mental disabilities often face increased violence.

Despite the breadth of profound challenges, global advocacy has been successful in ensuring stronger protections for persons with disabilities. Utilising the groundbreaking Convention on the Rights of Persons with Disabilities (CRPD), advocacy efforts have overseen legal reforms for the incorporation of disability rights into domestic policy, and spawned grassroots awareness campaigns to educate local communities on issues of disability, mobilising the population for the pursuit of change. This article seeks to identify and celebrate the ways in which global advocacy has made significant steps forward in the fight for disability rights in recent years.

Political Participation and Access to Justice

Persons with disabilities are routinely deprived of their legal capacity, ultimately depriving them of the ability to make decisions about their own lives. They are often unequal citizens by law and access to their economic, civil and political rights - including the right to access health services, to a fair trial, to seek employment, to marry, and to vote - is severely limited. Under the CRPD, a convention which the vast majority of countries worldwide have signed and ratified, no citizen should be denied their civil and political rights on the basis of a disability.

Libya - Amending Electoral Law

Looking to Libya, a collaborative effort by human rights institutions successfully altered the 2012 draft electoral law. The draft placed heavy restrictions on the right to vote in elections for people with mental disabilities, a position enforced by social stigmas and popular intolerance of intellectual impairments. Concerns were raised about the Libyan government’s stance on this issue and its incompatibility with their international obligations under the CRPD as a signatory state. As a result, the provision categorically excluding people with mental disabilities from voting was removed before the law was passed.

UNAIDS - Disability-Inclusive HIV Programmes and Policies

In South Africa, a video produced by Human Rights Watch depicting a disabled human rights advocate living with HIV gained international attention. The video led to a CNN feature: ‘Deaf, gay, and HIV positive activist battles against stigma’, raising a great deal of public awareness of an issue that cuts across public health and disability. Human Rights Watch’s video was later screened by The Joint UN Program on HIV/AIDS (UNAIDS) at executive board meetings and briefings for its staff in Geneva. Ultimately, the video was fundamental in increasing understanding among programme staff concerning the establishment of HIV programmes and policies worldwide. The need for disability-inclusive initiatives was identified, and now constitutes an essential feature of all UNAIDS programmes.

Institutions and Places of Detention

Under the broad term ‘mental disability’, many people worldwide are confined to psychiatric institutions for years. Many of these institutions lack adequate mental health services and are unhygienic; some even lack clean water. Mistreatment of patients is commonplace. Use of restraints, physical beatings, verbal intimidation, confinement and forced treatment are all used as forms of punishment.

Ghana - New Mental Health Laws

NGO reporting revealed many people with mental disabilities in Ghana suffer severe abuses in psychiatric institutions and ‘prayer camps’. After the publication of Human Rights Watch’s 2012 report ‘Like a Death Sentence’ among others, international pressures have forced the Ghanaian government’s commitment to regular inspections and monitoring of spiritual healing centres. Furthermore, the government has agreed to abide by its legal obligations under the CRPD in the implementation of Ghana’s new mental health laws.

Croatia - Deinstitutionalisation Plan

Disparaging remarks made to the Human Rights Council by NGOs (coupled with damning reports) over the last decade concerning institutionalisation in Croatia has galvanised a sizeable response from the Croatian government. They have adopted a plan for the deinstitutionalisation of more than 9,000 people with intellectual and mental disabilities living in institutions. This move should take those with disabilities away from unsanitary and abusive environments such as those detailed in the NGO reports. It is expected that the Croatian government will abide by their commitment to rehabilitate former patients.

Children with Disabilities

There are approximately 120 to 150 million children with disabilities under the age of 18 worldwide. Reports compiled by various human rights NGOs all detail the same recurring problems that face children with disabilities in many parts of the world; they are denied access to school, subjected to forms of physical violence including corporal punishment, and face segregation in schools, institutions and other places of detention.

Nepal - Inclusion of Children with Disabilities in Schools

Following pressures from UNICEF and Human Rights Watch, the World Bank and other development partners have begun developing strategies for the integration of children with disabilities into their education programmes and mainstream schooling in Nepal. The government’s Department of Education is also developing its own specialised curriculum for children with intellectual disabilities with the assistance of local DPOs.

Report by the UN Special Rapporteur - A New Tool for Protecting Children Deprived of Liberty

In March 2015, UN Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez, presented to the Human Rights Council in its 28th Session a report that links the depravation of liberty to the right to be free from torture and ill-treatment. This new tool for advocacy could have significant benefits for children with disabilities who have been institutionalised. Crucially, the report promotes the recognition and protection of the rights of the child in the context of the depravation of liberty and inhuman treatment together. As a result, it has been lauded as extremely progressive and contributive to the corpus of human rights law protecting the rights of the child. With so many disabled children locked away, framing the issue in this way could give human rights advocates ‘teeth’ in the struggle against profoundly harmful institutionalisation.

Women and Disabilities

Women with disabilities face multiple forms of discrimination on account of their disability and gender. The risk of physical and sexual violence is heightened where women are limited in their physical mobility, they are isolated, there are barriers to communication, and as a result of common myths that persons with disabilities are weak or asexual. Alarmingly, many women with disabilities are routinely denied sexual and reproductive rights through the practice of forced sterilisation.

Northern Uganda - Disability-Inclusive Gender-Based Violence Programmes

Following reports from Amnesty International and Human Rights Watch published in 2005 and 2010 respectively, international organisations have collaborated with local disabled persons’ organisations (DPOs) to develop effective gender based violence programmes. Women and girls with disabilities are now subject to targeted outreach and training initiatives, ensuring all survivors of sexual and gender-based violence receive every service and support mechanism available. Both international and domestic disability organisations are now providing training for police, health workers and lawyers on how to intervene in cases of violence against women with disabilities.

It may often appear, particularly with an issue as complicated as disability rights, that changing the world is an insurmountable challenge. The threats posed to human rights values are widespread, substantial and extensive. However, human rights advocacy is proving to work. The successes of international organisations and DPOs detailed in this article should give some evidence to that idea, however slowly it may occur. Advocacy on behalf of others, particularly if we do not share their struggle, is essential to realising and securing a common humanity.

The hidden epidemic of carers in the developing world.

Unpaid carers are often overlooked by policy- makers and the development community. The World Health organisation (WHO) estimates over a billion people, about 15% of the world's population have some form of disability. With rates of disability set to increase due to population ageing and chronic health conditions, a silent epidemic is growing.

Disability is extremely diverse. While some health conditions associated with disability result in poor health and extensive health care needs, others do not. However for those who do need care, adequate rehabilitation services including daycare centres for children and adults are severely lacking in the developing world. In 2002, the WHO estimated in developing countries the need for carers would need to increase by 400% to meet demand. Affordability of health services and transportation are two main reasons why people with disabilities do not receive needed health care in low income countries. 30- 32% of non-disabled people are unable to afford health care compared to 51-53% of people with disabilities.

The lack of appropriate services for people with disabilities is a significant barrier to health care. For example, research by Carers Worldwide in Uttar Pradesh and Tamil Nadu states of India found that after the cost, the lack of services in the area was the second most significant barrier to using health facilities. Due to a lack of services many family members are torn between leaving their family member at home without any assistance. Leaving a person with disabilities alone can often be highly distressing and dangerous. The other alternative is to leave them to the care of a younger member of the household, quite often a girl, meaning she will miss out on an education.

Women and girls are often in unpaid work which will involve back breaking work including lifting, feeding and maintaining personal hygiene of their loved ones. Often in a home which is not accessible for people with disabilities. The impact of this unpaid work, particularly families who live in poverty, is huge. The responsibility of a carer infringes women's ability from going to school or joining the labour market quelling their chance of economic improvement.

This constant affliction can adversely affect a woman's health, and because of the informal nature of care work, it is not recognised by the state, which means women are often not be eligible for social benefits, such as pensions. Women's mental health is also affected many caregivers feel they are voiceless, marginalised and excluded.

The international development virtually ignores caregivers throughout the developing world. A UN report commented that in the Beijing declaration in 1995 (a global commitment to achieve equality, development and peace for women) that the disparity between women and men in paid and unpaid work needed to be tackled had not been matched with action. The report says "across the world,millions of women still find that poverty is their reward for a lifetime spent caring, and unpaid care provision by women and girls is still treated as an infinite cost-free resource that fills the gaps when public services are not available or accessible.

Caregivers worldwide are one of the only international NGO's providing support to caregivers in developing countries. Although their efforts are admirable more needs to be done by governments on how to value and redistribute unpaid care work. Future development goals should also take into account unpaid care in its targets and indicators.

The UN report recommend that governments should also conduct regular surveys on the time given over to care work with a view to recognising, reducing and redistributing it. They should also design policies that take into account unpaid care, which could include the provision of affordable childcare, improved local healthcare provision to shift the responsibility for attending to a relative's medical needs from a woman to the public sector.

For this change to happen it is essential that the profile of disability in developing world and the health of caregivers is recognised by the public, NGOs and governments. Without changing perceptions of disabilities and the government acknowledging the woefully neglected caregivers worldwide carers will continue to be unacknowledged.