Human Rights Council Holds Annual Interactive Debate on Rights of Persons with Disabilities on Theme of Statistics and Data

OHCHR

Concludes Interactive Dialogue with Special Rapporteur on the Right to Food

The Human Rights Council this afternoon held its annual interactive debate on the rights of persons with disabilities, on the theme of statistics and data collection under article 31 of the Convention on the Rights of Persons with Disabilities. It also concluded its interactive dialogue with the Special Rapporteur on the right to food.

Ilze Brands Kehris, Assistant Secretary‑General for Human Rights, said States should support the agenda of community inclusion, both to provide persons with disabilities with the support they needed to be fully part of their communities and to reduce excessive unpaid care work, which disproportionally impacted the economic empowerment of women and girls. They should also continue supporting persons with disabilities around the world, and increase their efforts to find concrete solutions to the many challenges they faced.

Gerard Quinn, Special Rapporteur on the rights of persons with disabilities and moderator, said data was crucial for rational policy making, and to help prioritise between competing goals. Data was also important in measuring real obstacles against assumed articles.

María Cecilia Rodríguez Gauna, representative of the Washington Group on Disability Statistics, said ensuring that no one was left behind required accurate and timely monitoring of the living conditions of the most vulnerable populations and in particular of persons with disabilities. Having disaggregated information on the population with disabilities contributed to monitoring inclusion to ensure the equal promotion and protection of human rights and fundamental freedoms for all persons with disabilities.

Ana Brian Nougrères, Special Rapporteur on the right to privacy, said personal data should be collected and disaggregated, as this guided States in creating action plans at both national and local level, with the aim of improving the situation of human rights, and this was the goal of any social action. People must be provided with mechanisms to safeguard their personal data, and this was even greater when dealing with sensitive data such as on health and rehabilitation.

Laisa Vereti, representative of the International Disability Alliance, said to have disability disaggregated data, partnership and capacity development was crucial. Support by donors and partners was also critical. Investing into capacity building of organizations of persons with disabilities allowed them to come to the table as equal partners equipped with skills and knowledge to influence policy change.

In the discussion, speakers said that including persons with disabilities in all areas of life was a matter of social justice. Data collection should be disaggregated by disability, and linked to human rights obligations, which would make it possible to advance and understand the situation of persons with disabilities, and improve the implementation of the Convention on the Rights of Persons with Disabilities. No person should be overlooked when speaking of full enjoyment of human rights and fundamental freedoms, including full participation in civil and political life. Data collection should be managed in full compliance with confidentiality, and in respect of human rights, and States should collect it in collaboration with organizations for persons with disabilities.

Speaking in the debate on the rights of persons with disabilities were: Egypt (on behalf of a group of countries), Lithuania (on behalf of a group of countries), Mexico (on behalf of a group of countries), Algeria (on behalf of a group of countries), New Zealand (on behalf of a group of countries), Saudi Arabia (on behalf of the Gulf Cooperation Council), European Union, Morocco (on behalf of Group of Arab States), Israel, United Arab Emirates, Greece, Italy, Mozambique, United Nations Educational, Scientific and Cultural Organization, United Nations Children’s Fund, Lesotho, Singapore, Cambodia, Botswana, Belarus, Fiji, Paraguay, United Nations Population Fund and Thailand.

Also speaking were: Human Rights Council of Morocco, Asian-Pacific Resource and Research Centre for Women, International Disability Alliance, International Lesbian and Gay Association, Action Canada for Population and Development and Beijing Guangming Charity Foundation.

At the beginning of the meeting, the Council concluded its interactive dialogue with Michael Fakhri, the Special Rapporteur on the right to food. The interactive dialogue started in the morning meeting and a summary can be found here.

Mr. Fakhri, in concluding remarks, said he was worried that food was going to be weaponised more and more, and he urged the Council to stand up against the weaponisation of food. On farmers’ rights, he said that indigenous lives and women’s lives were often at stake as they were often targeted, and therefore they were the first to get hungry. Farmers were stewards, he said, and they were taking care of everyone’s food system. The predominant guardians of food were women. The main problem was corporate power as too much power was in the hands of too few people and they needed to remember this common problem when they were addressing famine and access to seeds.

In the discussion on the right to food, speakers said farmers’ rights organizations should be strengthened, and capacity building should be provided for them to improve their knowledge and income. Food security was vital for human rights. Climate change was a great challenge to the security of the agricultural system, and funding was required to ensure that farmers could continue to respond to needs in that context. The hunger crisis had increased due to the pandemic, and people had been denied the ability to exercise and use resources vital for their livelihoods due to the industrialisation of seeds, making them into a profit initiative. The right to food was part of human rights, and conflicts experienced in the world, as well as migration, were primarily due to a scarcity of food products, worsened further by climate change. The price of food had risen sharply, and biodiversity had been reduced over the last century, heavily impacting the climate crisis.

Speaking in the discussion on the right to food were Cambodia, Indonesia, Benin, Morocco, Togo, South Africa, Sudan, Holy See, Bangladesh, Belarus, Tunisia, World Food Programme, United States, Afghanistan, Malawi, Bolivia, Jordan, Syria, Ukraine, Viet Nam, Iran, Cabo Verde, Saudi Arabia and Armenia.

Also speaking from the floor were: Centre Europe – Tiers Monde, FIAN International, China Foundation for Poverty Alleviation, Human Rights Advocates Inc., Centre for International Environmental Law, Peace Brigades International, Earthjustice, Make Mothers Matter, Franciscans International and Sikh Human Rights Group.

Speaking in exercise of the right of reply were Armenia and Azerbaijan.

The webcast of the Human Rights Council meetings can be found here. All meeting summaries can be found here. Documents and reports related to the Human Rights Council’s forty-ninth regular session can be found here.

The Human Rights Council will next meet at 10 a.m. on Tuesday, 15 March to hold an interactive dialogue with the Special Rapporteur on the promotion and protection of human rights and fundamental freedoms while countering terrorism, followed by an interactive dialogue with the Independent Expert on the enjoyment of human rights by persons with albinism.

Interactive Dialogue on the Right to Food

The interactive dialogue with Michael Fakhry, the Special Rapporteur on the right to food, started in the morning meeting and a summary can be found here.

Discussion

In the discussion with the Special Rapporteur on the right to food, speakers said the report contained recommendations for all stakeholders, including relevant international organizations, and this was key for the promotion and protection of the right to food. There should be a food-resilient agenda in all countries, with targets for availability, affordability, and access to healthy food. Farmers’ rights organizations should be strengthened, and capacity building be provided for them to improve their knowledge and income. Food security was vital for human rights. Agriculture was a vital sector for many economies. Seed systems were vital in securing human rights. Farmers played a vital role in ensuring food security. Climate change was a great challenge to the security of the agricultural system, and funding was required to ensure that farmers could continue to respond to needs in that context. Research played a vital role in productivity, but States faced intellectual property rights problems when searching to increase productivity.

States should take ownership of the 1998 United Nations Declaration on the Right to Seeds and Biodiversity and use it to the end of ensuring food and bio-security. The hunger crisis had increased due to the pandemic, and people had been denied the ability to exercise and use resources vital for their livelihoods due to the industrialisation of seeds, turning them into a profit initiative. The Human Rights Council should remain seized of the activities of agribusiness companies. Indigenous seeds were important as they strengthened food sovereignty, secured land rights, and boosted local production. Seed systems were vital for indigenous people and for farmers, and the international community needed to work to protect these. The right to food was part of human rights, and conflicts experienced in the world, as well as migration, were primarily due to a scarcity of food products, worsened further by climate change. Properly understood, stewardship of the natural environment was an act of responsibility, not of dominion, and farmers responded to this by the continuous renewal of biodiversity. The price of food had risen sharply, and biodiversity had been reduced over the last century. It was vital for farmers to have access to bio-services, with a holistic approach of farm systems that respected the Earth and the nature of the human being. The issue of increasing global and local food insecurity due to the war in Ukraine was also raised by several speakers, as was its impact on global trade in agricultural products. The protection of Ukraine was vital to avoid a deadly wave of hunger sweeping the globe.

Concluding Remarks

MICHAEL FAKHRI, Special Rapporteur on the right to food, said he was worried that food was going to be weaponised more and more, as was seen in Yemen, and he urged the Council to stand up against the weaponisation of food. On farmers rights, he said that indigenous lives and women’s lives were often at stake as they were often targeted, and therefore they were the first to go hungry. He underlined the importance of agricultural workers’ rights and workers’ lives. If they had learned anything from this pandemic, it was that if workers got sick, all went hungry. Mr. Fakhri called for all rights to be brought together for a coherent response. Farmers were stewards, he said, and they were taking care of everyone’s food system. The predominant guardians of food were women. The main problem was corporate power as too much power was in the hands of too few people and they needed to remember this common problem when they were addressing famine and access to seeds. This was not just about supporting the national seeds systems, it was also about enhancing the free sharing of seeds among communities as only when communities were able to work together that everyone would be able to survive what lay ahead. The trade regime needed to be rethought, as well as its relation to science, technology and innovation. Science was important, however, technology often reproduced inequalities. Only if technology was embedded in traditional knowledge and a human rights framework could they ensure that technology served the people. Everyone had to remember what was at stake: the seed system was the right to life itself, and human rights required to put all seeds into the hands of all the people.

Annual Interactive Debate in the Rights of Persons with Disabilities on the Theme of Statistics and Data Collection under Article 31 of the Convention on the Rights of Persons with Disabilities

Keynote Statement

ILZE BRANDS KEHRIS, United Nations Assistant Secretary‑General for Human Rights, said States should support the agenda of community inclusion, both to provide persons with disabilities with the support they needed to be fully part of their communities, and to reduce excessive unpaid care work, which disproportionally impacted the economic empowerment of women and girls. States should also continue supporting persons with disabilities around the world, and increase their efforts to find concrete solutions to the many challenges they faced. Accurate and disaggregated data was a core and indispensable element for the effective and equal enjoyment of rights. It was critical that States increased their efforts to collect and appropriately disaggregate data by disability in censuses and sector-specific surveys. Also, disability-specific surveys needed to be conducted to have a granular assessment of barriers to the participation in society affecting persons with disabilities. Further action was needed to connect human rights obligations and data collection for evidence-based policy implementation. Disability-specific policies, commonly requiring a disability assessment to identify who could access them, should be informed by clear human rights objectives to avoid being used as a tool for limiting the enjoyment of human rights.

In addition, the use of data protection principles could increase human rights compliance of data collection and statistical processes. Finally, States needed to acknowledge the importance of community-driven data collection, particularly in contexts where data systems on persons with disabilities were underdeveloped. Data use and dissemination in accessible formats was key for persons with disabilities to exercise their right to access to information, with the objective of increasing their capacity to contribute to policy design, implementation and monitoring. States should maintain their humanitarian efforts to take action to address the specific needs of persons with disabilities in conflict situations. Human rights-based data collection and use and identification of persons with disabilities could increase efficacy and effectiveness of such efforts, as well as increase their efforts to solidify data and promote further research on the impact of the COVID-19 pandemic on persons with disabilities.

Statements by the Moderator and the Panellists

GERARD QUINN, Special Rapporteur on the rights of persons with disabilities, said data was crucial for rational policy making, and to help prioritise between competing goals; it was also important in measuring real obstacles against assumed articles. Article 31 had some parallels in international law, including the United Nations’ systemic rules on opportunities for persons with disabilities, dating back to 1993. The idea was not entirely new, but was in place regarding the structural and systemic process that States needed to go through in implementing the Convention on the Rights of Persons with Disabilities.

CECILIA RODRIGUEZ GAUNA, Representative of the Washington Group on Disability Statistics, said that inclusion was the guiding principle of the 2030 Agenda for Sustainable Development, which promoted leaving no one behind. Ensuring that no one was left behind required accurate and timely monitoring of the living conditions of the most vulnerable populations and in particular of persons with disabilities. This implied the need to routinely collect disability-specific indicators and indicators that could be compared with the non-disabled population. Statistical systems, which were responsible for providing valid, reliable and timely information, were faced with the challenge of generating statistics that accounted for the magnitude of the population with disabilities. The demand for national-level data that allowed for regional and international comparability had made notable progress since the inclusion of the Washington Group’s abbreviated set of questions for measuring disability in censuses and household surveys.

However, in terms of how data disaggregation was used to identify the exclusion of persons with disabilities in policy implementation, Ms. Rodriguez Gauna said that, as required by the Sustainable Development Goals, it was important to disaggregate data by disability to monitor inclusion. In this regard, data disaggregation was useful, among other things, to monitor the implementation of the Convention on the Rights of Persons with Disabilities; monitor the Sustainable Development Goal indicators with disaggregation by disability; provide substantive data on barriers and disparities in the realisation of human rights of persons with disabilities compared to the non-disabled populations; and know the characteristics of the households in which persons with disabilities resided and the comparison with households without persons with disabilities, to monitor the inclusion of persons with disabilities over time. In conclusion, Ms. Rodrigez Gauna said that having disaggregated information on the population with disabilities contributed to monitoring inclusion to ensure the equal promotion and protection of human rights and fundamental freedoms for all persons with disabilities.

ANA BRIAN NOUGRÈRES, Special Rapporteur on the right to privacy, said personal data should be collected and disaggregated, as this guided States in creating action plans at both national and local level, with the aim of improving the situation of human rights, and this was the goal of any social action. Access to the data must be guaranteed for the individual as well. The data should be disaggregated by disability, and therefore appropriate action should be taken. People must be provided with mechanisms to safeguard their personal data, and this was even greater when dealing with sensitive data such as on health and rehabilitation. The protection of persons with disabilities must be provided on a level with the rest of the population, and the risks that could come into play must be taken into account.

Ms. Nougrères said the protection of personal data and privacy could not be used as an excuse to avoid collecting and aggregating data on disabilities. The principles of the protection of this fundamental human right – the right to privacy – may differ from State to State – what could differ was the principle of the ultimate goal, that the data must be relevant, accurate and up to date. The rights of data-holders were particularly important, as they were discriminated against because of their disability. Oversight and sanctioning mechanisms must pay particular attention to possible breaches when it came to having access to personal data. States must support data collection of persons with disabilities, bearing in mind the relevant principles, drawing up action policies aimed at making progress in improving the access to housing by persons with disabilities. There was a need to take action, and to take action now.

LAISA VERETI, Representative of the International Disability Alliance, shared the experience of International Disability Alliance in advocating for and promoting article 31 of the United Nations Convention on the Rights of Persons with Disabilities to ensure that data collection at the national level was inclusive of persons with disabilities. To have disability disaggregated data, partnership and capacity development was crucial. Support by donors and partners was also critical. Investing into capacity building of organizations of persons with disabilities allowed them to come to the table as equal partners equipped with skills and knowledge to influence policy change.

Ms. Vereti said that relationship building was another key element in a partnership. For the last five plus years, International Disability Alliance had built and maintained partnership with regional statistics divisions and the United Nations Children’s Fund’s Pacific Office. It was important to partner with a technical organization whose duty was to support state collection data on persons with disabilities. Persons with disabilities were part of the design, data collection, and analysis to have a disability monograph out of the census data. In conclusion, Ms. Vereti said that, to date, each and every country in the Pacific that had held a census had used the Washington Group Short Set. For a region like the Pacific, a lot could be achieved through stronger regional cooperation; disability disaggregated data was a testament to that.

Discussion

In the ensuing discussion, speakers said that including persons with disabilities in all areas of life was a matter of social justice. Data collection should be disaggregated by disability, and linked to human rights obligations, which would make it possible to advance and understand the situation of persons with disabilities, and improve the implementation of the Convention on the Rights of Persons with Disabilities. The report of the Office of the High Commissioner for Human Rights provided guidance to States in regard to their obligations in this regard. No person should be overlooked when speaking of the full enjoyment of human rights and fundamental freedoms, including full participation in civil and political life. Data collection should be managed in full compliance with confidentiality, and in respect of human rights, and States should collect it in collaboration with organizations for persons with disabilities. Gathering and compiling information on people with disabilities should be carried out and disability indicators should be determined. Disinformation should be combatted. The personal data of persons with disabilities and sensitive data on health and rehabilitation called for specific methods to protect the right to confidentiality. States should further involve persons with disabilities more effectively in the various processes to gather, store and disseminate information.

The key role that statistical and research data played in identifying and addressing barriers faced by persons with disabilities in obtaining their rights should not be ignored. An inclusive society, including persons with disabilities as equal participants, should be the goal. Mechanisms to accurately measure progress in attaining each right in the Convention on the Rights of Persons with Disabilities should be developed. In the wake of the COVID-19 crisis, there was an opportunity to do more to close data gaps. The commitment of the Special Rapporteur had made it possible to advance the rights of persons with disabilities in the Council and in the United Nations system as a whole. The rights and human dignity of all persons with disabilities should be recognised at all levels of society. Data was crucial in establishing policy aiming to address the barriers facing persons with disabilities. The best data collection came from people living themselves with disabilities and when it was collected using a human rights-based approach. Precise action was required to obtain exact information on people with disabilities in order to guide the decision-making process – without it, they suffered even more from being invisible. Data collection and statistics were vital for protecting the rights of persons with disabilities.

Concluding Remarks

CECILIA RODRIGUEZ GAUNA, Representative of the Washington Group on Disability Statistics, said that the participation of persons with disabilities was a principle and an obligation pursuant to the Convention on the Rights of Persons with Disabilities. Persons with disabilities must participate in all phases of data gathering. The challenges of article 31 of the Convention needed to be met. To promote dialogue between agencies and organizations of persons with disabilities and organizations in charge of gathering data, regular consultation mechanisms were needed as well as persons with disabilities monitoring the areas where there was a lack of data on them. The embodiment of some of the questions of the Washington Group would inform in depth what was the situation of those families with a person with disability. One of the problems they had encountered was the difficulty in carrying out large scale surveys. Therefore, they needed to carry out small scale surveys targeting for example rural areas, as well as surveys for people who were in institutions in all areas where there was a lack of information.

ANA BRIAN NOUGRÈRES, Special Rapporteur on the right to privacy, said something that could be interesting here was that some things worked as tools to involve persons with disabilities in the various processes the speakers were referring to. Systems in which the relevant people were involved from the very start were very important, as was risk analysis in the protection of privacy, which latter should be further explored. The best tools to involve persons with disabilities, as often happened in matters pertaining to privacy, were education, both peer-to-peer and social education. Everybody should be told what privacy was and what it meant.

LAISA VERETI, Representative of the International Disability Alliance, said it was very important to build the capacity of the representatives of persons with disabilities, on data and statistics. Persons with disabilities could not come to the table and participate meaningfully if they were not supported with the capacity to do so. States could work more closely with the organizations of persons with disabilities by providing them with resources: the level of their commitment could be equated to their annual spending of the budget on persons with disabilities. The lack of disaggregation, data gaps, and the barriers to persons with disabilities needed to be addressed, with stronger regional and international cooperation. It was important to discuss the barrier questions, such as why children with disabilities were not in school, and why adults could not access health institutions, or were not in employment.

GERARD QUINN, Special Rapporteur on the rights of persons with disabilities, said the Convention on the Rights of Persons with Disabilities was not just a human rights instrument, it was also a development instrument, and the dialectical link was incredibly important, and should be a major departure point for States in addressing how to determine their data paradigms. In the past, persons had been problematised, and the data reflected that, but this needed to be changed, and data could play an enormously accurate role in determining and addressing problems. Privacy was not a bar to data collection, but was a fundamental principle – if it was gotten wrong, it could result in unintentionally exposing persons with disabilities to more discrimination. As for the role of civil society, it was necessary for co-design for the future. It would cost, but it was vital, as with civil society, the international community could accurately target the real problems and address them in real time.

Link: https://www.ungeneva.org/fr/news-media/meeting-summary/2022/03/le-conseil-des-droits-de-lhomme-tient-son-debat-annuel-sur-les

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