Communications on the Closing of the COVID-19 Disability Rights Monitor

17 Dec 2021

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In mid-2020, over the span of nearly four months, 2,152 respondents from 134 countries took the time to raise their voices to share their lives in the midst of a global pandemic. The majority of respondents were persons with disabilities, who responded from a range of locations -within institutions, locked down in their homes and isolated within their communities- as the sought to get accurate information on the COVID-19 virus.

COVID-19 pandemic has had a horrendous impact on disabled people. Death, isolation and segregation are some of the results. The disability movement and initiatives such as the COVID-19 Disability Rights Monitor have been crucial to highlight this impact and make sure that our voices do not remain hidden, as has too often been the case.

Jamie Bolling and Nadia Hadad, Co-chairs, European Network on Independent Living

Collectively, these efforts resulted in the largest internationally comparable dataset, at the time, on how persons with disabilities worldwide were significantly and disproportionately affected by the COVID-19 pandemic. Analysis of these thousands of testimonies resulted in Disability Rights during the Pandemic: A global report on findings of the COVID-19 Disability Rights Monitor on the experiences of persons with disabilities and the consequences of government actions or inactions on the rights of persons with disabilities, which was released in October 2020 by the COVID-19 Disability Rights Monitor (DRM).

The shocking accounts, provided within this global report, alert about the devasting effects of COVID-19 pandemic, including about the appalling inequality and total social isolation, to what persons with disabilities, still placed in residential institutions, have been subjected. The report must be thoroughly studied by policy and decision makers for taking an immediate human-rights based response for liberating all persons with disabilities from institutions and providing them with independent-living opportunities in the community.

Jonas Ruskus, Vice Chair, United Nations Committee on the Rights of Persons with Disabilities

The findings of the global report revealed that governments around the world have failed to protect the numerous rights of persons with disabilities, namely the rights to life, health, liberty; freedom from torture, ill-treatment, exploitation, violence, and abuse; the rights to independent living and inclusion in the community; and the right to inclusive education.

The Disability Rights Monitor was a valuable initiative in many senses: it raised the voices of persons with disabilities, historically ignored by governments; it made up for States’ omissions regarding the production of information at a time when building diagnosis was essential; and it showed good practices designed to respond to the health crisis, all of them extremely useful to start thinking about recovery processes that leave no one behind. The report elaborated by the COVID-19 DRM not only constitutes a great input for States to develop policies that ensure the rights of this group, but will also help civil society advocate for them.

Celeste Fernandez, Disability Rights Program Coordinator, Civil Association for Equality and Justice (Argentina)

With these findings, the seven Coordinating Group members of the COVID-19 DRM began a global effort to call attention to the widespread violation of the human rights of persons with disabilities. Members of the COVID-19 DRM presented key findings in open and closed sessions of the 23rd Session of the UN Committee on the Rights of Persons with Disabilities; the 13th Conference of States Parties (COSP) to the CRPD; the Civil Society Forum during the 14th Session of COSP; side events at the 14th Session of COSP, the 59th Session of the UN Commission for Social Development; and a number of webinars - on disability data hosted by the Stakeholder Group of Persons With Disabilities for Sustainable Development - and on disability rights and the COVID-19 pandemic organized by the McGill Institute of Health & Social Policy. Additional publications on the COVID-19 Disability Rights Monitor have also appeared in

Disability & Society.

The COVID-19 pandemic has tested all of us in a huge variety of ways. But most importantly, it has shone a clear and harsh light on the realities of discrimination and human rights abuses that persons with disabilities experience on a daily basis across the globe. If nothing else, this year has been a stark reminder that we have a long way to go. The COVID-19 Disability Rights Monitor collaboration was a really effective response to the growing nature of the pandemic, and the need for our advocacy on an inclusive response to be based on real evidence of the impact on people with disabilities, in their own words.

Dominic Haslam, Chair, International Disability and Development Consortium

Global and National Impact

The COVID-19 DRM brought international attention to the reality of the experience of persons with disabilities during the pandemic.

COVID-19 once again proved the unique role of organizations of persons with disabilities: from documenting the impact of the pandemic, to advocating for inclusion, and providing urgent support, organizations of persons with disabilities were at the front line of response to the pandemic. Unfortunately, dealing with emergencies is part of our life on this planet and no one will be able to provide efficient solutions to address discrimination and exclusion of persons with disabilities better than their representative organizations. Therefore, we call on global leaders and policy makers to consider strengthening organizations of persons with disabilities in their recovery efforts.

Elham Youssefian, Inclusive Humanitarian Action and Disaster Risk Reduction Adviser, International Disability Alliance

At the national level, organizations of persons with disabilities (OPDs) continue to call for action from their governments with varying results in greater inclusion of persons with disabilities in designing and implementing disability-inclusive COVID-19 response and recovery programs.

The COVID-19 DRM report supports our advocacy at the national level regarding an inclusive COVID-19 response. In June 2020, the Ministry of Women's Empowerment and Child Protection (KemenPPPA) in collaboration with SAPDA launched two special protocols for an inclusive COVID-19's response, the first protocol is a special protocol for handling children with disabilities during a pandemic, and the second protocol is special protection for women with disabilities experiencing violence during the pandemic. With this COVID-19 DRM report and advocacy, it has helped us to maintain and monitor the government's commitment to ensure the protocol is implemented. National policies that have been delivered internationally tend to be implemented faster and better than those that have not been delivered.

Sholih Muhdlor, Project Manager, Advocacy Centre for Women with Disabilities and Children Foundation (Indonesia)

From the time of its launch, the COVID-19 DRM Report continues to buttress our advocacy efforts in a national and -even- sub-regional Southern African context. The warm reception of the COVID-19 DRM Report by civil society, government, media and the general public alike opened pathways for subsequent collaboration on inclusive approaches to government responses to the pandemic. Particularly, it highlighted grave silence from the African continent, a dynamic that has channeled deeper and more nuanced research into disability inclusiveness in the region.

Auma MI Dinymoi, Centre for Human Rights, University of Pretoria (South Africa)

Official Closure of the COVID-19 DRM and Continued Calls from the Global Disability Movement

The Coordinating Group members of the COVID-19 DRM (Validity Foundation, the European Network on Independent Living, Disability Rights International, the Centre for Human Rights at the University of Pretoria, the International Disability Alliance, the International Disability and Development Consortium, and the sister organisations Disability Rights Fund and Disability Rights Advocacy Fund) would like the express our deep gratitude to the more than 2,150 individuals who raised their voices through the COVID-19 DRM.

COVID-19 has shone a spotlight on inequalities and discrimination and this includes, disproportionately, people with disabilities - those hidden away in institutions or forgotten behind closed doors in the very communities where they should have been supported and embraced. If there is to be a legacy from this pandemic, let it be that the voices of people with disabilities are finally heard loud and clear. Validity firmly believes that Build Back Better must be led by and for those who have been most impacted. The COVID-19 DRM is a shining example of the power of collective action by persons with disabilities and their allies. We must not let this falter.

Victoria Macdonald, Chair, Validity Foundation

Data collected through COVID-19 DRM have helped highlight the need for a disability-inclusive response and for emergency deinstitutionalisation. ENIL has been privileged to be part of this initiative, and we are proud that our joint recommendations are fully in line with the Independent Living philosophy and are based on disabled people’s lived experiences. This approach is, in our view, key to building back better and we hope that disabled people across the world can use COVID-19 DRM findings to put pressure on their governments and become part of the recovery efforts.

Jamie Bolling and Nadia Hadad, Co-chairs, European Network on Independent Living

As the COVID-19 pandemic continues to affect people around the world in varying waves, the COVID-19 DRM Coordinating Group members are closing the rapid human rights monitoring function of the COVID-19 DRM.

In a world in which government data on persons with disabilities is still too often absent, the COVID-19 DRM – a result of civil society collaboration – highlighted critical information about pandemic impacts on this community. COVID-19 has had a disproportionate impact on persons with disabilities, particularly on persons with disabilities who are also part of other marginalized groups, like girls and women. This data is strengthening the case for increased attention and resources for disability inclusion and the importance of “nothing about us without us.

Diana Samarasan, Founding Executive Director, Disability Rights Fund and Disability Rights Advocacy Fund

At the global level, the collective testimonies of persons with disabilities highlighted the urgent situation of persons in institutions, particularly among the members of the UN Committee on the Rights of Persons with Disabilities, which has gone on to form a Working Group on Emergency Deinstitutionalization. The majority of the Coordinating Group members have shifted their focus to a particularly pressing call to action in light of the COVID-19 pandemic: global emergency deinstitutionalization of persons with disabilities. This new group, called the Global Coalition on Deinstitutionalization, is partnering with the UN Committee on the Rights of Persons with Disabilities Working Group on Emergency Deinstitutionalization to develop guidelines on Deinstitutionalization.

The findings of the COVID-19 DRM survey powerfully demonstrate what we have known for decades - institutionalization is a human rights abuse that puts people with disabilities at risk of violence, abuse, and even death. The COVID-19 pandemic, and the measures that governments put in place to prevent the spread of disease, put people with disabilities in institutions of all kinds at even greater risk. The findings of the COVID-19 DRM survey must serve as a call for urgent deinstitutionalization so that all people with disabilities can live freely in the community as demanded by the CRPD.

Eric Rosenthal, Executive Director, Disability Rights International