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.

DFID leads the world's efforts to push disability up the global development agenda.

The UK will lead the world's efforts to end extreme poverty by pushing disability up the global development agenda. The International Development Secretary, Priti Patel, recently announced its new focus on disability for 2017 on International Day for People with Disabilities.

The development community reacted with 'surprise and delight' at Priti Patel's promise that the UK 'will do the heavy lifting' to improve the lives of 800 million disabled people. The International Development department has made a strong commitment to disability rights in her role as secretary of state for international development. Firmly stating that UK aid will improve lives for disabled people in developing countries.

The International Development Secretary acknowledged that more than one billion people are living with disabilities globally - 80% of whom live in developing countries. Patel speaking on International Day for People with Disabilities said;

"I am determined to establish DFID as the global leader in this neglected and under prioritised area- people with disabilities must be at the heart of our work to build a more prosperous and secure future, which is in all of our interests."

This builds on the commitment put forward in the Bilateral Development Review 2016, for DFID to become a global leader on disability. DFID's focus areas on disability inclusion will include, upholding the United Nations Convention on the Rights of Persons with Disabilities, to ensure people with disabilities systematically benefit from international aid and humanitarian assistance; ensuring people with disabilities access a quality education and productive employment; working with national governments and the private sector to ensure people with disabilities no longer face stigma and discrimination; pushing partners to collect crucial data to improve our understanding of disability in development, increase their internal expertise on disability; and design programmes that prioritise and deliver results for people with disabilities.

Patel wants the UK Department for International (DfID) to lead the world on this issue. She commented "Where we go, others will follow," she said adding that DfID will "do the heavy lifting." She wants the department to collect more data, gather evidence for effective programmes and involve disabled people more to achieve this.

 Patel said she wanted to make sure 'that disabilities are addressed both systematically and consistency through all our development objectives'. Education is another area in which DFID will focus building on existing projects. In Pakistan, DFID is helping children with mild to moderate disabilities attend mainstream schools. This echoes Patel's commitment to the sustainable development goal (SDG) promise to 'leave no one behind".

As well as more inclusive education, Patel voiced a commitment to giving more support to people in the refugee crisis affected by disability. Unicef estimates that for every child who dies in conflict three acquire a disability. This is an area in which DfID may need to lead the way on but the whole of the development community needs to be involved with.

Despite concern throughout the development sector at Patel's appointment after she said she plans to "overhaul aid based on "core Tory values" some NGO's are encouraged by her commitment to disability. In 2016 when she was employment minister, Patel pushed through a bill in the House of Lords that will affect disabled people in the UK by cutting and support allowance. For those of us who are sceptical about her words, we will wait in anticipation.

Promoting the rights of disabled children

It is estimated that, overall, between 500 and 650 million people worldwide live with a significant impairment. According to the World Health Organisation (WHO), around 10% of the world's children and young people, some 200 million, have sensory, intellectual or mental health impairment. Around 80% of them live in developing countries.

Statistics such as these demonstrate that to be born with or acquire an impairment is far from unusual or abnormal. Sadly children who live with a physical, sensory, intellectual or mental health disability are among the most stigmatised and marginalised of all the world's children. Although all children are at risk of being victims of violence, disabled children find themselves at significant increased risk because of stigma, negative traditional beliefs and ignorance.

Due to the lack of social support, limited opportunities for education, employment or participation in the community further isolates disabled children and their families. Disabled children are also often targeted by abusers, who seem them as easy victims. According to researchers, 'children with a physical, sensory, intellectual or mental health impairment are at increased risk of becoming victims of violence'. Although the amount of research available is extremely limited, the American Academy of Pediatrics in 2011 estimated that abuse amongst disabled children occurs at annual rates at least 1.7 times greater than their non-disabled peers.

More targeted research studies also indicate reasons for serious concern. For example, one group of researchers report that 90% of individuals with intellectual disabilities experience sexual abuse at some point in their lifetime. Research by UNICEF suggests that the specific type and amount of violence against disabled children will vary depending on whether it occurs within the family, in the community, in institutional settings or in the work place.  Despite the variations, the most striking issue is the reoccurring stigma and prejudice prevalent across the world.

Throughout history, many societies have dealt poorly with disability. Many cultural, religious and popular social beliefs often assume that a child born with a disability or becomes disabled after birth as the result of a curse, 'bad blood', an incestuous relationship, a sin committed in a previous incarnation or a sin committed by a family member.

A child born into a community where such beliefs exist increases the risk of child abuse. For example, Advantage Africa who operate in Kenya and Uganda note that 'a person is raped every half an hour in Kenya, and incidents of rape are thought to be up to three times higher against people with disabilities'.  This violence compounds already existing social, educational and economic marginalisation that limits the lives and opportunities of these children.

Disabled children are far less likely than their non-disabled peers to be included in the social, economic and cultural life of their communities. This increases their chances of being trafficked or sold into prostitution. For example in Taiwan a recent study found that the proportion of child prostitutes who had mild developmental disabilities was six times greater than what might be expected from the incidence in the general population.

Violence and sexual abuse are rife across all sectors of everyday life including schools, family homes, institutions, workplace and criminal justice system. Disabled children are far more likely to end up in the criminal justice system and suffer abuse due to lack of training, understanding and discrimination. Moreover, disabled children in developing countries are more at risk to end up in the hands of criminal gangs due to a lack of economic opportunity. UNICEF estimates that perhaps a third of all street children may have some type of disability. This increases their risk of psychological abuse by gangs, sexual exploitation and abuse within the criminal justice system.

Lack of consequences for abusers and lack of response to disabled children by the police, judges and court system further compounds the risks faced by disabled children. Due to a lack of knowledge about disability within the legal system very few abusers are prosecuted. There are a number of reasons why conviction rates are so low ranging from the police believing the claim is false or disabled children are easily confused. Even more troubling is the assumption that a child or adolescent with a disability, is unable to tell 'right' from 'wrong' or to decide themselves what they want and do want done to their bodies. Even when police, lawyers or judges recognise the abuse, the families are often encouraged to drop the charges because they believe a disabled child will not be a reliable witness.

Unsurprisingly there is a severe lack of support for survivors, domestic violence shelters, drug and alcohol intervention programs, and other community-based programs specifically designed to address behaviours and practices strongly associated with violence, are often inaccessible to those with disabilities.

If violence against children is a global concern then the development community need to include all disabled children in outreach programmes. If disabled children are continually marginalised and isolated within the community violence will never end. The Thematic Group lead by one of the leading experts in global health Nora Groce specialising in disability recommends that intervention and improvement are gravely needed.

Services and programs at the levels of government and civil society, as well as individual family and advocacy initiatives that can drive these components forward. However, it is important to italicise the fact that no single initiative either through government, civil society or advocacy can alone eliminate violence against disabled children. This systemic global epidemic must be an on-going collaborative effort of viable changes are to be made.

It's time to talk about loos

Access to clean water and adequate sanitation have been a central part of development policy for many years. It is essential for anyone to live a healthy and productive life, and is a priority to lift people out of poverty. However, in spite of global efforts following the adoption of the Dublin Principles, 650 million people still do not have access to clean water and almost 2.3 billion do not have access to adequate sanitation.

Sadly, many are still excluded. By excluding people from accessible water and toilet facilities that can be used comfortably and with dignity by people with physical and sensory impairments are not widely available. Consequently, this is detrimental for the whole of society.

The cost of exclusion is high.  It exacerbates inequality within communities, increases risk of water-related diseases and malnutrition. Women and girls are particularly at risk of accident or violence when going to the toilet in the open air. Lack of water also means lack of access to livelihoods activities. For example, if schools do not have adequate sanitation design is a factor contributing to disabled dropping out of school, especially disabled girls.

WaterAid is one charity which is committed to ensuring access for all and breaking down the barriers that face disabled people on a day to day basis. Accessible toilets enable disabled people to be independent and lead healthier more dignified lives. By making a simple adaptation can make a world of difference allowing a disabled person to use a latrine rather than avoiding using the toilet or defecating in the open. An end to poor health which can exacerbate their economic and social position.

Installing a handrail next to a toilet seat mean not only disabled people benefit but also the wider community such as the elderly, sick people, children and pregnant women. WaterAid has worked across the world engaging with the local community and asking disabled people what they need. For example, in Mali, they have designed and developed low-cost adaptations for traditional African toilets. Wooden toilet seats are placed over the hole in the ground and PVC tubes direct waste into the toilet. Raised bricks next to the hole also allow visually impaired people to accurately guide the seat over the hole. WaterAid also chose a material which is lightweight and durable so it is easy to clean.

WaterAid is working to ensure disabled people are included in governments' water and sanitation sector policy monitoring. However, this needs to be a central part of all development agencies policy. We need to include disabled people and people with physical and sensory impairments to be part of discussions about what their needs are to ensure WASH programmes are successful.

Love, war and hope - a year in photos.

2016 will stand in history as a 'critical juncture' with Brexit and a Trump administration, history will be shaped by how we respond as a global community. In 2017 we need to stand together to protect our human rights and work together to battle against this turning political tide. 

Eddie Ndopu, disability activist and inspiration

Source  http://mg.co.za/article/2016-07-11-00-eddie-ndopu-is-ready-willing-and-able

'We fell in love': relationships and people with learning disabilities – in pictures

Source  https://www.theguardian.com/social-care-network/gallery/2016/jun/20/learning-disability-week-relationships-love-friendship 

2016 has been marked with a fundamental change in war and consequently how the international community has responded, this young girl lost both of her legs during the Yemen war.

Source  https://www.icrc.org/en/document/scars-war-yemens-disabled

This year we celebrated the 2016 Paralympics

Source  http://www.telegraph.co.uk/paralympic-sport/2016/08/25/paralympics-2016-jonnie-peacock-insists-rio-should-be-ashamed-of/ 

'We fell in love': relationships and people with learning disabilities – in pictures

Source  https://www.theguardian.com/social-care-network/gallery/2016/jun/20/learning-disability-week-relationships-love-friendship 

Another year plagued with cuts in the UK, protesters in Brighton come to the streets.

Source http://www.disabledgo.com/blog/2016/07/protesters-bring-rotten-pip-message-to-the-core-of-westminster/#.WEx6FqKLSRs 

What we can do for International Day of Persons with Disabilities (IDPD)

Today we mark the International Day of Persons with Disabilities (IDPD). Since 1992, the United Nations of International Day of Persons with Disabilities (IDPD) has been celebrated annually on 3rd December around the world. The theme for this year's International Day is "Achieving 17 Goals for the Future We Want".

This marks the recent adoption of the 17 Sustainable Development Goals (SDGs) and the role of these goals "in building a more inclusive and equitable world for persons with disabilities". The UN state that this year's objectives include assessing the current status and foundation for a future of "greater inclusion for persons with disabilities". 

The message this year from the United Nations General Secretary, Ban Ki Moon, states that the SDG's is based on a pledge that no one is left behind. Achieving this requires the full inclusion and effective participation of persons with disabilities in society development. So what does this mean for us and how can we play a role?

1. Support charities with specific development targets and indicators which assist disabled people. 

Development policy should be inclusive this means including disabled people with development discourse and policy. If you decide to donate to a charity try to investigate if the policy is inclusive of disabled people. Far too often disabled people are neglected from development programmes and are overlooked. 

If we all called for inclusive development policy then perhaps we can make it towards the UN's goal for 2030 and nobody will be left behind. 

2. Ensure access to al mainstream services 

For us to meet the SDG in 2030 every global citizen needs to help bring changes to laws, policies and institutions and society to ensure that disabled people have access to all mainstream education, health, employment, transportation, information/communication and social services equally with dignity. 

3. Empower women and girls with disabilities 

Women and girls are facing double discrimination and this needs to end. Empowering women and girls with information about their rights and how they can claim them are essential for development. They must have access to the legal system and have equal rights to hold property and inherit. We must keep campaigning and working together to ensure women are included, every step of the way. 

4. Employment 

To be an inclusive society, we must promote the employment of disabled people within in all sectors and support entrepreneurship development. The development sector hand in hand with governments should support necessary development initiatives for people with disabilities aimed at overcoming barriers they face in seeking employment, including vocational training. 

5. Health and rehabilitation 

We need to ensure all disabled people have access to health and rehabilitation services that respect their physical and mental integrity and dignity. This includes providing information, services and counselling on sexual and reproductive health issues. 

On this International Day of Persons with Disabilities, we need to urge national and local governments, businesses and everyone in society to maintain efforts to end discrimination against disabled people. By working together, raising awareness and campaigning together we can achieve an inclusive society where no one is left behind. 

This week campaign is dedicated to the children at Thuy An Centre, Viet Nam and the boys at Home of Hope, Cambodia.