Human Rights Council Holds an Interactive Dialogue on the Elimination of Discrimination against Persons Affected by Leprosy and their Family Members and Concludes a Dialogue on the Right to Freedom of Opinion and Expression

The Human Rights Council this afternoon held an interactive dialogue with the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, and concluded an interactive dialogue with the Special Rapporteur on the promotion and protection of the right to freedom of opinion and expression.

Alice Cruz, Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, said she was honoured to address the Council for the last time.  At her discretion, she would use the term “Hansen’s disease” instead of “leprosy”.  In her final report, she presented a set of key recommendations to States, intergovernmental agencies and non-governmental organizations concerning the elimination of discrimination against persons affected by Hansen’s disease and their family members.  The Hansen’s disease community was undergoing a paradigmatic shift from a medical or charity-based framework to the increasing recognition of persons affected by the disease as rights holders. 

Ms. Cruz said significant factors hindering persons affected by Hansen’s disease included language; the digital divide; difficult-to-use procedures that required a high level of literacy; and non-inclusion of the particular issues that affected them on the agendas of Member States.  These barriers needed to be properly identified and removed.  Ms. Cruz spoke on her country visits to Angola and Bangladesh.  Angola and Bangladesh took the floor as countries concerned.

In the discussion, many speakers commended the efforts of the Special Rapporteur to promote the empowerment and active participation of persons affected by leprosy and their family members in public affairs, contributing to transforming laws, policies, practices and norms.  Speakers regretted that segregation and stigmatisation of persons affected by leprosy persisted to this day, contributing to misconceptions in regard to the disease, as well as to preventing those affected by it from participating in public life and from enjoying their human rights.  Such discrimination needed to stop, and it was important to ensure that people affected by leprosy had access to health care services on a non-discriminatory basis.  The fact that women and children were among the most vulnerable to leprosy-related discrimination was also particularly worrying, including for its negative implications on gender equality and the enjoyment of the right to education. 

Speaking in the dialogue were the European Union, Portugal, Egypt, Japan, United Nations Children's Fund, Italy, Viet Nam, Sovereign Order of Malta, Indonesia, United States, Malaysia, Venezuela, South Africa, Pakistan, India, Malawi, China, Senegal, Algeria, Angola, World Health Organization and Cameroon.

Also speaking were International Federation of Anti-Leprosy Associations, Human is Right, Mother of Hope Cameroon Common Initiative Group, Associazione Comunita Papa Giovanni XXIII, Association pour l'Intégration et le Développement Durable au Burundi, Platform for Youth Integration and Volunteerism, World Barua Organization, and Indigenous People of Africa Coordinating Committee.

At the beginning of the meeting, the Council concluded its interactive dialogue with the Special Rapporteur on the promotion and protection of the right to freedom of opinion and expression, which started in the previous meeting.

Speakers, among other things, said the right of freedom of expression and opinion was essential for achieving sustainable development, was the foundation of democratic society, and was an enabler for human rights.  Many speakers said States and corporations had an obligation to uphold the right to freedom of expression, and to create an enabling environment for vulnerable groups to exercise freedom of expression.  Concerns were raised about growing violations against journalists and human rights defenders, including censorship of journalists and the closure of media organizations with dissenting views, as well as physical attacks.  Measures needed to be implemented to protect journalists’ freedom of expression.  Some speakers expressed concern about the link between terrorism and hate speech.  A number of speakers said hate speech and disinformation encouraged xenophobia, racism and hate speech, and threatened democratic societies.  The exercise of the right to freedom of expression needed to be carried out within the ambit of law.  Freedom of expression needed to be proportionate and strike a balance with national security, they said.

In concluding remarks, Irene Khan, Special Rapporteur on the promotion and protection of the right to freedom of opinion and expression, said the issue of the digital divide was an issue of affordability.  Access to the Internet in the least developed countries was significantly more expensive than in developed countries.  There was some hard economical reprioritisation which needed to be done in this area by Member States, the international community and businesses.  Structural barriers were a major problem for women; technology would not solve social injustices.  It was important to look deeper into issues of poverty and illiteracy and correct these issues to enhance connectivity to the Internet.  Hate speech was a complex problem but simplistic, blunt solutions, like censorship, could be counterproductive, she said.  There needed to be a multi-faceted, sophisticated response to hate speech.  Ms. Khan closed by saying that the Council should contribute to the political declaration of the High-Level Summit in September, sending the message that without human rights, development could not be sustained. 

Speaking in the discussion were South Africa, Pakistan, Togo, Namibia, India, Greece, Malawi, Slovakia, Tanzania, China, Republic of Moldova, Niger, Chile, Afghanistan, Sudan, Georgia, Cuba, Russian Federation, Brazil, Romania, Algeria, Yemen, Montenegro, Ethiopia, Tunisia, Philippines, Belarus, Mexico, Iran, Lebanon, Croatia, Nigeria, Bangladesh and Cambodia.

Also speaking were Article 19 - International Centre Against Censorship, Institute for Reporters' Freedom and Safety, Alliance Defending Freedom, Commission nationale indépendante des droits de l'homme (Burundi) Freedom House, Peace Brigades International, Lawyers' Rights Watch Canada, Liberal International, Alsalam Foundation, Beijing NGO Association for International Exchanges and Réseau Unité pour le Développement de Mauritanie.

At the end of the meeting, Azerbaijan, Armenia and Cambodia spoke in right of reply.

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 fifty-third regular session can be found here.

The Council will next meet on Monday, 26 June at 10 a.m., when it will hold an interactive dialogue with the Special Rapporteur on the independence of judges and lawyers, followed by an interactive dialogue with the Special Rapporteur on the human rights of migrants.

Interactive Dialogue with the Special Rapporteur on the Promotion and Protection of the Right to Freedom of Opinion and Expression

The interactive dialogue with the Special Rapporteur on the promotion and protection of the right to freedom of opinion and expression started in the previous meeting and a summary can be found here.

Discussion

In the discussion, many speakers, among other things, said the right to freedom of opinion and expression was essential for achieving sustainable development, was the foundation of democratic society, and was an enabler for human rights. 

States and corporations had an obligation to uphold the right to freedom of opinion and expression.  Media freedom was important for a sustained democracy.

Some speakers expressed concern about the link between terrorism and hate speech.  Freedom of expression needed to be proportionate and strike a balance with national security.  

A number of speakers reported on national efforts to promote the freedom of opinion and expression, develop legislation and tools to ensure access to information, support civil society and human rights defenders’ right to freedom of expression, and promote media freedom domestically and internationally.  

Questions were asked on how international cooperation could be strengthened to achieve the Sustainable Development Goals, and about obstacles to promoting freedom of expression and media literacy.

Intermediary Remarks

In intermediary remarks, IRENE KHAN, Special Rapporteur on the promotion and protection of the right to freedom of opinion and expression, said killing or attacking journalists, activists or human rights defenders was the most egregious form of censorship, and must end.  Impunity bred more impunity.  Governments must take investigations and prosecutions into these matters seriously.  It was shameful that of the 1,602 journalists who had died, only one out of 10 cases had been investigated and prosecuted.  The key to breaking this was in the hands of governments.  If impunity was not addressed, there should be an international task force established by the Council to bring those who killed journalists and activists to justice. 

Ms. Khan said excellent regional instruments had been adopted, including Escazù, which recognised environmental defenders as a category to be protected.  However, there was always a gap between the papers signed and policies rolled out on the ground.  This responsibility fell to the governments.  Multi-stakeholder initiatives would only work if all participants, including governments showed a commitment and willingness to change.  There was no room for rhetoric alone.  Online gender-based violence had an impact on development and democracy, as many female leaders were now discouraged from entering into public life.  The sources of misinformation needed to be looked into.  Governments needed to share verified, factual information, and regulate social media intelligently, with a focus on human rights due diligence and impact assessment.  It was important to support independent media, which was a good source of fact checking. 

Discussion

Continuing the debate, some speakers said access to information was a powerful driver of sustainable development.  Freedom of opinion and expression played a vital role in promoting transparency, accountability and good governance.  Freedom of expression empowered individuals to voice their concerns and hold governments to account.  Empowering individuals helped to overcome insecurity.

Access to information was crucial for women’s empowerment.  States needed to remove barriers to women’s access to information.  Members of indigenous communities who protested development projects, and lawyers and human rights defenders who challenged social norms or protested against the Government, were targeted by threats and attacks.  States needed to create an enabling environment for vulnerable groups to exercise freedom of opinion and expression.  

Concerns were raised about growing violations against journalists and human rights defenders, including censorship of journalists and the closure of media organizations with dissenting views, as well as physical attacks.  Measures needed to be implemented to protect journalists’ freedom of expression.  Thorough, prompt and impartial investigations into threats and attacks faced by journalists needed to be carried out.  Some speakers said that the label of journalist should not be misused as a guise for carrying out political activities.

Misinformation and disinformation threatened rights and fundamental freedoms, as well as sustainable development.  Digital platforms needed to ensure the protection of such freedoms.  States needed to pursue accountability for platforms where disinformation was spread and for persons responsible for spreading such information.

A number of speakers said some countries manipulated social media by spreading false information to sway public opinion.  Such actions needed to be countered.  Hate speech and disinformation encouraged xenophobia, racism and hate speech, and threatened democratic societies.  The exercise of the right to freedom of expression needed to be carried out within the ambit of the law.

Some speakers said the right to freedom of opinion and expression was not absolute, and this right should not jeopardise the rule of law.  Freedom of expression could be limited when it was in the public interest.  It should not affect other collective rights.   

Speakers presented national measures to protect human rights defenders and the freedom of the press, ensure the public’s right to freedom of opinion and expression, educate the public on responsible communication, expand Internet access, preserve public order, promote the public’s access to information, investigate reports of violence against journalists or human rights defenders, and build trust in the media.  

Questions were asked on the decriminalisation of defamation; on how freedom of expression could be promoted in contexts of institutionalised terror; on how to close the digital divide; on how States could comply with the right to freedom of expression in the context of sustainable development; on limits to the freedom of expression and to the sovereignty of States; on what more States could do to promote the voices of journalists; on how the Special Rapporteur’s proposed international organization for promoting freedom of expression would work in collaboration with existing mechanisms in this field; and on the dangers of labelling journalists as enemies of the State.

Concluding Remarks

IRENE KHAN, Special Rapporteur on the promotion and protection of the right to freedom of opinion and expression, said the issue of the digital divide was an issue of affordability.  Access to the Internet in the least developed countries was significantly more expensive than in developed countries.  There was some hard economical reprioritisation which needed to be done in this area by Member States, the international community and businesses.  Structural barriers were a major problem for women; technology would not solve social injustices.  It was important to look deeper into issues of poverty and illiteracy and correct these issues to enhance connectivity to the Internet. 

Hate speech was a complex problem but simplistic blunt solutions, like censorship, could be counterproductive.  There was a need to look at who was producing hate speech.  Political leadership could bring people together.  However, in many cases, political leaders added fuel to the fire through inflammatory comments which incited racial hatred.  Ms. Khan said there needed to be a multi-faceted, sophisticated response to hate speech.  Human rights were indivisible, interdependent and universal, and freedom of expression was a powerful catalyst for sustainable development.  There needed to be a shift from rhetoric to reality as time was running out.  States which vocally professed their support for the 2030 Sustainable Development Agenda were among those who also repressed information and freedom of expression.  The Council should contribute to the political declaration on the high-level summit in September, sending the message that without human rights, development could not be sustained. 

Interactive Dialogue with the Special Rapporteur on the Elimination of Discrimination against Persons Affected by Leprosy and their Family Members

Report

The Council has before it the report of the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members (A/HRC/53/30), on Progress and remaining challenges in eliminating discrimination against persons affected by leprosy and their family members.

Presentation of Report

ALICE CRUZ, Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, said she was honoured to address the Council for the last time.  In her final report, she presented a set of key recommendations to States, intergovernmental agencies and non-governmental organizations concerning the elimination of discrimination against persons affected by leprosy and their family members.  At her discretion, she would use the term “Hansen’s disease” instead of “leprosy”.  The report examined the root causes of this group’s vulnerability to the COVID-19 pandemic.  To facilitate the implementation of the principles and guidelines for the elimination of discrimination against persons affected by Hansen’s disease and their family members, Ms. Cruz presented a policy framework for rights-based action plans. 

The report also included concrete examples of good practice areas for action.  The Hansen’s disease community was undergoing a paradigmatic shift from a medical or charity-based framework to the increasing recognition of persons affected by the disease as rights holders.  The global human rights system needed to support this shift by cooperating closely with local and national organizations of persons affected by Hansen’s disease and by enabling the participation of such organizations in their work.  Significant factors hindering persons affected by Hansen’s disease, included language; the digital divide; difficult-to-use procedures that required a high level of literacy; and non-inclusion of the particular issues that affected them on the agendas of Member States. These barriers needed to be properly identified and removed.

Ms. Cruz regretted governments’ very limited engagement with her mandate.  She had visited Angola in 2022 and presented the corresponding report.  While there was no formal discrimination against persons affected by Hansen’s disease and their families in the country, there was a generalised gap between law in books and law in action. 

She also visited Bangladesh this year and commended the State for having repealed a British colonial law “The Lepers Act 1898” in 2011.  However, substantive and intersectional discrimination against persons affected by Hansen’s disease were issues of great concern in the country.  The situation of persons affected by Hansen’s disease and their family members in Bangladesh showed that the country’s outstanding economic growth was not reaching the entire population and cast doubts on whether fundamental principles of the right to development were being met. 

From the viewpoint of the situation of persons affected by Hansen’s disease, development was still largely approached from an economic growth framework, which led to an inability of development policies to reach those hit by deeply disabling forces, including colonialism, capitalism, patriarchy, economic inequalities and climate change.  Climate change was already impacting persons affected by Hansen’s disease and their families, who mainly lived in countries in the Global South.  If Member States wanted to respect the universality of human rights, it was essential to strengthen cooperation with the mechanisms working on non-discrimination, and to respect article 32 of the Vienna Declaration.  Unfortunately, over the years as mandate holder, Ms. Cruz had often seen selectivity and double standards in action, which only pushed persons affected by Hansen’s disease and their families further behind.  She urged the Council to use a more neutral term than leprosy, such as Hansen’s disease, in future resolutions.

Statements by Countries Concerned

Angola, speaking as a concerned country, thanked the Special Rapporteur for her visit to Angola.  Angola was making efforts to eliminate Hansen’s disease from a direct health perspective, as well as the negative secondary impact on the affected persons and their families.  The human rights-based approach constituted an important component of those efforts.  The visit created the opportunity for the country to verify the challenges and gaps existing in the national health system in relation to the treatment of the disease, and the effective enforcement of the rights of the affected people. 

The absence of an early diagnosis and insufficient awareness of communities and society were the main factors that prevented people with leprosy from enjoying a better state of health, thus contributing to the persistence of abuse and bullying.  Angola had taken note of the recommendations formulated to help national authorities to fully respond to the difficulties in terms of treating and monitoring the disease, including aiding and empowering the affected people and their families.  The good practices shared by Ms. Cruz and her encouragement in favour of increasing South-South cooperation were much appreciated.  There was a lack of interest of pharmaceutical companies in the plight of persons affected by Hansen’s disease, which had a negative impact on equitable access to medicines and other health products.  These challenges needed to be overcome as soon as possible.  Angola had shown its commitment to cooperating with Special Procedures, commended Ms. Cruz on her work, and supported the renewal of the mandate.

Bangladesh, speaking as a concerned country, said good health and well-being of everyone was at the core of its national development policies.  The theme of its eighth five-year plan for 2020 to 2025 was “Promoting prosperity and fostering inclusiveness”.  The report by the Special Rapporteur presented both the progress achieved and the challenges that needed to be further addressed.  The Special Rapporteur had commended the Prime Minister’s declaration to eliminate leprosy by 2030.  The Government welcomed the acknowledgement of Bangladesh’s visible progress on awareness building among leprosy-affected people about their rights and various efforts.  Bangladesh also appreciated the Special Rapporteur’s key policy recommendations.  These were being carefully studied for appropriate implementation where suitable.  Some similar recommendations had already been incorporated earlier into national health policy. 

The specific aims of Bangladesh’s national health policy, adopted in 2011, were to ensure accessibility of primary health care and emergency care for all.  The Anti-Discrimination Bill 2022 was before Parliament.  It would combat all types of discriminatory practices and policies in the country.  Further, the Government would continue the implementation of assistance, such as cash transfers, affordable housing as well as education and healthcare support, to continue safeguarding the social welfare of its citizens, especially those in the vulnerable and lower income segments.  Bangladesh reaffirmed its commitment to pushing the human rights agenda forward, including in relation to combatting discrimination against persons affected by leprosy and their family members.  It was ready to continue to work with the Special Rapporteur and all partners in this regard.

Discussion

In the discussion, speakers, among other things, welcomed the Special Rapporteur’s report on the progress made and remaining challenges in eliminating discrimination against persons affected by leprosy and their family members.  They commended the efforts of the Special Rapporteur to promote the empowerment and active participation of persons affected by leprosy and their family members in public affairs, contributing to transforming laws, policies, practices and norms.  A draft resolution was submitted to extend the mandate of the Special Rapporteur for another three years, with the wish to continue the global efforts towards resolving the remaining issues, based on the progress made and momentum generated by Ms. Cruz.

Speakers noted that 13 years had passed since the General Assembly’s resolution 65/215 reaffirmed that persons affected by leprosy should be treated as individuals with dignity and enjoy all human rights and fundamental freedoms.  However, the report was clear regarding the persistence of discrimination and segregation of these persons.  Speakers regretted that segregation and stigmatisation of persons affected by leprosy persisted to this day, contributing to misconceptions in regard to the disease, as well as to preventing those affected by it from participating in public life and from enjoying their human rights. 

Discrimination and violence against people living with leprosy and their families needed to stop, and it was important to ensure that people affected by leprosy had access to health care services on a non-discriminatory basis.  The fact that women and children were among the most vulnerable to leprosy-related discrimination was also particularly worrying, including for its negative implications on gender equality and the enjoyment of the right to education.  All States, endemic or non-endemic, were encouraged to fully implement the principles and guidelines for the elimination of discrimination against persons affected by leprosy and their family members.  In this context, the Special Rapporteur’s policy framework for rights-based action plans was key in this context. 

Speakers commended Angola for its cooperation with the Special Rapporteur during her visit and for its commitment to eliminate leprosy-related discrimination in the country.  Brazil was congratulated for enacting laws to provide reparations to persons affected by leprosy.  Japan was commended for efforts undertaken to combat discrimination against people with leprosy.  Speakers also described how they were taking steps to combat discrimination against persons with leprosy, including through legislative changes and medical advancements.

Despite the progress mentioned in the report regarding the economic empowerment and mental health of persons affected by leprosy and their family members, what further measures could States take to make further improvements in this area?  From her perspective as the mandate holder who had worked on this issue for nearly six years, what needed to be prioritised in further promoting international cooperation to eliminate leprosy-related discrimination?  How could developed countries help endemic countries to address leprosy and its discrimination?

Intermediary Remarks

ALICE CRUZ, Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, in intermediary remarks, said she looked forward to the implementation of her recommendations in Angola and Bangladesh.  Ms. Cruz highlighted the importance of providing persons affected by Hansen’s disease with diagnosis.  Hospitals around the world were not prepared to diagnose Hansen’s disease.  Greater efforts were needed from Governments to provide such persons with access to a higher standard of living and enforce disability rights.  Persons affected by Hansen’s disease and family members experienced psychosocial disabilities due to the discrimination they faced.  The provisions of the Convention on the Rights of Persons with Disabilities needed to be fully enforced.  States needed to create an enabling environment in which persons affected by Hansen’s disease could enjoy living on an equal basis with others.

Ms. Cruz called on Bangladesh to revise discrimination legislation to include discrimination on the basis of Hansen’s disease.  South-South cooperation was important to both eliminating Hansen’s disease and discrimination of affected persons.  It was also important to open social dialogue to address the issues faced by persons with Hansen’s disease to access their workplace rights.  Children affected by Hansen’s disease were lagging behind in education levels, and were often expelled from schools.  Institutions needed to monitor discrimination of persons with Hansen’s disease and collect data to inform social policies.  There was also a need to address the digital divide.  Persons affected by Hansen’s disease had limited access to digital technologies. 

Discussion

In the continuing discussion, many speakers acknowledged the valuable contributions of the Special Rapporteur towards conducting research and raising awareness on one of the oldest diseases known to humanity, Hansen’s disease, commonly known as leprosy.  The paradigm shift from dealing with leprosy exclusively within medical and charity frameworks, to recognising people affected by leprosy and their families as rights holders, was welcomed.   The Special Rapporteur was commended for the people-centred approach carried out in her work, which empowered and elevated the voices of people affected by leprosy in the ongoing dialogue. 

Leprosy was one of the 20 neglected tropical diseases recognised by the World Health Organization.  Leprosy affected the poorest and most marginalised communities that already had a history of discrimination.  Persons affected by this disease fell under the vulnerable group category, and therefore needed to be appropriately addressed within United Nations mechanisms.  Speakers noted with concern the ongoing challenges encountered by persons affected by leprosy, including discriminatory laws and lack of reparations for harm done.  There was a need for international cooperation by both leprosy-endemic and non-leprosy-endemic States in combatting stigma and discrimination related to the disease, with the ultimate goal of achieving zero leprosy as envisioned by the Global Leprosy Strategy.

Some speakers supported the proposal to intensify efforts towards removing existing barriers and promoting access to human rights systems.  As the international community commemorated the seventy-fifth anniversary of the Universal Declaration of Human Rights, it was important to be reminded of the need to combat discrimination in all its forms, including in the context of persons affected by leprosy.  Speakers reiterated their commitment to eliminating discrimination faced by leprosy-affected persons and their family members and outlined national steps taken in this regard.

Concluding Remarks

ALICE CRUZ, Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, said formal discrimination against persons affected by Hansen’s disease endured, and India was responsible for many discriminatory laws against this group.  It was the obligation of India and other States with similar laws to repeal them and provide redress to victims.  Ms. Cruz welcomed progress such as the repeal of a discriminatory law in Senegal.  It was important for all countries to develop comprehensive anti-discrimination legislation in collaboration of persons with disabilities.  Lack of acknowledgement of the disease was one of the reasons for its prevalence.  Economic and social rights had been denied to persons affected by the disease.  Ms. Cruz said she had recommended measures for improving the economic and social rights of this group.  The right to development was essential for a large majority of the world’s population.  It should be enforced not only by countries of the Global South but also of the Global North.



Link: https://www.ungeneva.org/en/news-media/meeting-summary/2023/06/afternoon-human-rights-council-holds-interactive-dialogue

 

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