An overview of my mandate as UN Special Rapporteur on the rights of persons with disabilities

2020-08-31

Although it is too soon for a comprehensive reflection of the work that has been done, I would like to share some of the benchmarks of the last six years, hoping that my experience as mandate holder might provide useful lessons for those coming after me.
 
In March 2015, I presented my first report with a vision to advance the rights of persons with disabilities and their inclusion at international, regional and national levels, centred on three main pillars of action: promoting citizenship, economic inclusion, and an understanding of disability as part of human diversity. Since then, I conducted 9 country visits and  issued several thematic reports; I promoted legal and policy reforms, participatory approaches, accountability and disability-inclusive data collection; I advised the United Nations system and governments on policies and practices; and issued more than 140 communications to States all over the world, addressing alleged human rights violations affecting persons with disabilities.
 
Strengthening the capacity of the UN system to advance the rights of persons with disabilities
 
A key priority of my mandate was to improve the coordination and cohesion within the UN system to realise the rights of persons with disabilities. I actively promoted the United Nations Disability Inclusion Strategy (UNDIS), which was adopted in 2019 to strengthen accessibility, inclusion and the mainstreaming of the rights of persons with disabilities across the UN system. As part of this process, at the request of the Executive Office of the Secretary-General, I conducted a baseline review of United Nations action to mainstream accessibility and disability inclusion, which informed the development of the UNDIS.
 
I also advocated for the inclusion of disability as part of the work of all UN human rights treaty bodies and special procedures, promoting common strategies among mandate holders. An example of this is the Expert Group Meeting on the inclusion of the rights of persons with disabilities in the work of the UN human rights mechanisms that I convened in Madrid, in 2017. In this regard, my designation as Chair of the Coordination Committee of Special Procedures of the Human Rights Council could be seen as a testament to the increased visibility of the rights of persons with disabilities during this period, which contributed to the progress made in mainstreaming disability across agendas of human rights treaties and mandate holders.
 
In addition, I have collaborated closely with platforms and networks such as the United Nations Partnership on the Rights of Persons with Disabilities (UNPRPD), and the UNDIS focal point network to support disability inclusion across the UN system.
 
Strengthening the capacity of States and other stakeholders to implement the rights of persons with disabilities
 
In order to bring attention to global challenges and provide policy guidance, I have released eleven thematic reports, focusing on social protection, participation in decision-making, disability-inclusive policies, access to rights-based support, sexual and reproductive health and the rights of girls and young women with disabilities, legal capacity and supported decision-making, the right to health, disability-specific forms of deprivation of liberty, older persons with disabilities, the impact of ableism in medical and scientific practice, and disability-inclusive international cooperation.
 
Together, these thematic reports addressed multiple interrelated aspects of three key challenges of the disability rights agenda at this historical juncture: promoting active citizenship and participation; combating disproportionate levels of poverty and social exclusion, and challenging outdated views that are incompatible with the notion of persons with disabilities as part of human diversity.
 

Monitoring the situation of the rights of persons with disabilities at country level

To assess the situation of persons with disabilities at country level, I visited the Republic of Moldova (10–17 September, 2015), Paraguay (19-27 November, 2015), Zambia (18-28 April, 2016), Democratic People's Republic of Korea (3-8 May, 2017), Kazakhstan (4-12 September, 2017), France (3-13 October, 2017), Kuwait (26 November to 5 December, 2018), Canada (1-11 April, 2019), and Norway (2-11 October, 2019). Unfortunately, owing to the COVID-19 pandemic, I could not visit Botswana and China as planned.
 
During these missions, I met with authorities, national human rights institutions and many children, women and men with disabilities who shared their stories, concerns and demands for change. I also visited facilities and services and obtained first-hand information which directly informed my findings and recommendations. 
 
Addressing alleged violations of the rights of persons with disabilities around the world
 
During my mandate, I have issued 148 individual or joint communications to States to bring to their attention information regarding alleged human rights violations or concerns affecting persons with disabilities. Communications addressed cases involving individuals or particular groups or communities; general patterns and systemic human rights violations, or legislation, policies or practices that are incompatible with the rights of persons with disabilities. All communications and their corresponding replies are available here.
 
Supporting the inclusion of persons with disabilities in the 2030 Sustainable Development Agenda
 
The 2030 Sustainable Development Agenda is a strategic priority for advancing the rights and inclusion of persons with disabilities. Over these years, I joined advocacy efforts by the UN system and the disability community to ensure the inclusion of disability-specific indicators, and for an increased involvement of international cooperation agencies in support of disability-inclusive development.
 
These efforts included calling on States and the UN System to adopt the Washington Group’s questionnaire for disaggregating data by disability in household surveys and national censuses for monitoring the implementation of the Sustainable Development Goals.
 
Supporting the inclusion of persons with disabilities in humanitarian action
 
During this period, the vulnerability of persons with disabilities in refugee crisis, natural disasters, regional conflicts and the COVID-19 pandemic became painfully evident. I joined the UN system and the disability community to advocate for urgent measures to protect persons with disabilities in these contexts, for example, through my participation in the  World Humanitarian Summit, promoting the adoption of the Charter on inclusion of persons with disabilities in humanitarian action in 2016.
 
In December 2018, I had the honour to speak at the first-ever UN Security Council Open Arria-Formula Meeting on the situation of persons with disabilities in armed conflict. Following this meeting, the Security Council adopted a ground-breaking resolution calling upon States and parties to armed conflict to protect persons with disabilities in conflict situations and ensure their access to justice, basic services and humanitarian assistance.
 
More recently, I advocated for disability-inclusive COVID-19 responses and recovery, contributing to guidelines and informative efforts by UNICEF, WHO, ILO among others. I’ve also contributed to the UN Secretary-General’s policy brief on disability-inclusive response to COVID-19, and commissioned a study to the London School of Economics on the impact of COVID-19 in institutional care, which should inform and guide concrete steps to transition care to community-based support arrangements.
 
Mainstreaming the rights of persons with disabilities in broader human rights agendas
 
Throughout my mandate, I worked closely with the disability community and human rights experts to ensure that broader human rights agendas do not contravene the human rights standards enshrined in the CRPD. For example, I collaborated with other UN experts in drafting the recently adopted International Principles and Guidelines on Access to Justice for Persons with Disabilities, which assist States and other actors to design, modify, and implement justice systems that provide equal access to justice for all persons with disabilities.
 
In 2018, at the Parliamentary Assembly of the Council of Europe, I opposed and advocated against the adoption of the draft additional protocol to the Oviedo Convention concerning the involuntary placement and treatment of persons with psychosocial disabilities, a position taken together with the CRPD Committee, the Special Rapporteur on Health and the Working Group on Arbitrary Detention.” I also contributed to the chapter on disability in the United Nations Global Study on Children Deprived of Liberty, highlighting the standards set by article 23 of the CRPD that challenge any form of institutionalization of children with disabilities, including in small group homes.  
 
I have also engaged with national human rights institutions, such as the CRPD Working Groups of the Global Alliance of National Human Rights Institutions (GANHRI) and the European Network of National Human Rights Institutions (ENNHRI). A new guide will soon be available which provides information and advice to NHRIs on how to engage and strengthen collaboration with this mandate.
 
Rethinking disability: awareness raising on the rights of persons with disability and the importance of embracing diversity
 
Under the concept of embracing diversity, I promoted awareness of the rights of persons with disabilities, disability pride, and counter ableism using social media and online campaigns. Since 2015, in partnership with UN entities and international disability organizations, we started celebrating the International Day of Persons with Disabilities as #ADay4All, through messaging and events that celebrated disability as part of human diversity. Over the years, several exhibitions and activities were hosted in Geneva every 3 December, including conferences, accessible yoga, art and photo exhibitions.
Illustration from the Captive & invisible series. Text: millions of persons are deprived of their liberty around the world becase of their disabilities 
Last year, in collaboration with Fine Acts, we launched Captive & invisible, a series of illustrated stories of people experiencing different forms of deprivation of liberty because of their disabilities. I was also invited to present the notion of disability as part of human diversity at the TEDx Geneva: “Rethinking Power”, and I will launch a series of animations to explain the rights of persons with disabilities in the coming weeks.
 
I have also seized my participation at the Global Disability Summit, interactive debates at the Human Rights Council, the Human Rights Council’s consultation on human rights and mental health, the Conference of States Parties to the CRPD, the Fifth Pacific Regional Conference on Disability, hearings at the National Assembly of France the Senate of Spain, and the Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, and countless others to bring these key messages forward.
 
Knowledge production and evidence-based advocacy
 
Knowledge production is essential for evidence-based advocacy. Over the last six years, I have promoted expert consultations, research studies, literature reviews and discussion papers, which have informed my work and expanded what we know about the situation of persons with disabilities in different parts of the world.
 
This work was conducted in partnership with different universities and research centres, including the National University of Ireland, Galway, the Trinity College Dublin, the University of Melbourne, London School of Economics, Inclusive Development Partners, and PLAN International, and with the invaluable support of students, interns, secondments and fellows. The work included: research on sexual and reproductive health and rights of young women and girls with disabilities, supported decision-making, disability-specific forms of deprivation of liberty, alternatives to coercion in mental health settings, access to justice for persons with disabilities, and disability-inclusive international cooperation.
two images: first: of two girls in a rural village in nepal. Text: her body, her choices, her future. second image: Two men, looking at the camera. Text: our lives, our choices 
 
Ensuring participatory and accessible methods of work
 
In accordance with the Convention on the Rights of Persons with Disabilities, I endeavoured to adopt accessible methods of work. All my country-specific and thematic reports are available in accessible formats, including Easy Read, a practice that I hope will be maintained and extended to other mandates.
 
I also sought to work in a participatory, consultative and open manner, actively involving persons with disabilities and their representative organizations in all my endeavours, issuing open calls for input to inform my thematic studies, and organizing expert consultations with the participation of a broad range of stakeholders.
 
In addition, I endeavoured to pay special attention to the multiple and intersectional forms of discrimination experienced by women and girls with disabilities in most societies, as well as by other groups within the diversity of the disability community, such as persons with intellectual disabilities, indigenous persons with disabilities and older persons with disabilities.
 
As the first Special Rapporteur appointed to this mandate, I aspired to make it a meaningful instrument for the overall advancement of our rights. I carried out my work in a collaborative manner, working closely with States, the United Nations system, persons with disabilities and their representative organizations, national human rights institutions, academia, donors and other stakeholders, and sought concrete results. Much progress has been made in the fourteen years since the adoption of the CRPD, but a constant and coordinated effort is still required to make the rights of persons with disabilities a reality.
 
I am deeply grateful to all those who collaborated with me during my mandate, including representatives of Member States, civil society, persons with disabilities, United Nations entities, donors, and many others, without whom this work would not have been possible. I would like to thank the staff of the Office of the UN High Commissioner for Human Rights and my office for their continuous support.

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