Women Human Rights Defenders Face Greater Risks Because of their Gender

Civil Society, Editors’ Choice, Featured, Gender, Global, Global Geopolitics, Global Governance, Headlines, Human Rights, Population, TerraViva United Nations

Opinion

Masana Ndinga-Kanga is Crisis Response Fund Lead with global civil society alliance, CIVICUS.

JOHANNESBURG, May 16 2019 (IPS) – Does the name Ihsan Al Fagiri ring a bell? How about Heba Omer or Adeela Al Zaebaq?

It’s likely that these names, among countless others, are not known to the average news consumer. But their tireless and dangerous work, however, has made news headlines as protests led to historic political change in Sudan.


To the communities of protesting women in Sudan, these names represent the valiant efforts to defy the authoritarianism of the Omar Al Bashir regime.

The sustained efforts of these women include mass mobilization, calling people to the streets of Sudan through ‘Zagrouda’ (the women’s chant) in response to rising costs of living amidst the country’s worst economic crisis.

These rallying calls of #SudanUprising, have been led by Sudanese women who are teachers, stay-at-home-mothers, doctors, students and lawyers. And yet, when President Al Bashir stepped down on April 11, the names of the women who spearheaded this political shift, were largely missing from the headlines.

This erasure is not uncommon. Women Human Rights Defenders (WHRDs) are often erased or slandered in efforts to intimidate them into quitting continuing their human rights work. In Egypt, Guatemala, Saudi Arabia, Uganda or the Philippines they are often called agents of international interests.

In Kenya, the United States and South Africa, their sexuality is called into question and they are harassed online. In China and the United Arab Emirates, they are detained for reporting or highlighting endemic levels of harassment. And yet, they refuse to be silenced.

These women are not alone at the interface of sustaining justice in sexual and reproductive health, environmental rights, economic accountability and conflict areas.

In spite of restrictions against them, WHRDs have campaigned boldly in the face of mounting opposition: #MeToo #MenAreTrash, #FreeSaudiWomen, #NiUnaMenos, #NotYourAsianSideKick, #SudanUprising and #AbortoLegalYa are just a few social campaigns that represent countless women at the coal face of systemic change for equality and justice. More and more WHRDs worldwide are working collectively to challenge structural injustices and promote the realisation of human rights and fundamental freedoms.

But there is a stark absence of knowledge on their work. Media reporting on the courageous work of women defenders tends to focus more on the challenges they face. Awareness of their restrictions is critical to the push for justice but equally important is knowledge about the work they do to sustain women’s rights globally.

Combined with the risks of ostracization and assault from relatives, community members and the state, WHRDs defy these risks to sustain social justice. Recognizing them only for their restrictions further contributes to the erasure they experience daily from state and others.

One way the narrative on WHRDs can shift is by focusing on the critical role they play in pushing forward a progressive agenda of change for all.

In Ireland last year, activists working in sexual and reproductive health and rights achieved a landslide referendum victory in which two thirds of voters chose to legalise abortion, after many years of pro-choice campaigning.

In the southern African kingdom of eSwatini, formerly known as Swaziland, the first ever Pride march was held last year in support of LGBTQI rights. LGBTQI groups in Fiji also scored the same first that year – the country’s inaugural Pride event, a victory of freedom of assembly for LGBTQI activists around the world.

The power of collective action was also on display in January when five million women formed a human chain across the southern Indian state of Kerala. The massive protest was organised in response to experiences of violence against women attempting to enter Kerala’s Sabarimala temple, a prominent Hindu pilgrimage site.

In Iran, a small women’s movement challenging the compulsory rule that requires women to fully cover their hair, has been developing. While in Colombia, activist Francia Marquez organised a 10-day march of some 80 women to protest against illegal mining on their ancestral land in the east of the country.

This activism is often thankless and dangerous work. Indeed, 2017 was the deadliest year on record for environmental women human rights defenders, with 200 environmental campaigners murdered.

WHRDs are at increasing risk of harassment not just from state actors, but also from multinational corporations, their communities and in some cases, their own families. International policy frameworks have tried to keep up with the heavy-handed crackdown from states on environmental WHRDs.

Last September, United Nations High Commissioner for Human Rights, Michelle Bachelet launched the For All Coalition to integrate human rights and gender equality throughout all major multilateral environmental agreements, including the Paris Agreement under the UN Framework Convention on Climate Change.

The Coalition is an important step in highlighting the ways in which climate change disproportionately affect WHRDs, and also recognises the role of local and indigenous communities of women in the realisation of environmental protection.

These policy gains are the first step in creating an enabling environment for WHRDs working in remote areas on land, indigenous rights and climate justice. They are often labelled as ‘anti-development’ for calling for accountable and transparent change.

In South Africa and Honduras, the gains of environmental women campaigners have been some international recognition of their work, but at high costs: for some, these costs sometimes include their lives. Since 2001, 47 human rights workers in the Philippines have been killed for their work of attempting to document environmental violations.

In order to take seriously the work of women human rights defenders, the mechanisms for protecting them have to begin to adapt to respond to their nuanced needs as women. They need to be sensitive to other dimensions that affect WHRDs such as sexual orientation, gender, race, class and indigenous status. Adequate institutional and policy support must be built on intersectional feminism which is consultative and responsive.

What will create a more favourable policy environment for women activists? That answer should include decriminalizing sexual and reproductive rights, for example, and removing restrictions on the registration of associations supporting WHRDs.

Governments should also conduct training and sensitisation programmes for law enforcement agencies, members of the judiciary and staff of national human rights institutions on the challenges faced by WHRD, and develop a national action plan for the protection of WHRDs.

To this day, resources do not reach WHRDs in remote areas and on the frontlines, and not because they are not applying! Gender-sensitive resourcing is critical to address the gap.

These suggestions are a smaller part of a larger need for systemic change but point to the need for consistent global activism to support women human rights defenders at all times – oftentimes before crises emerge.

The victory of Sudanese women, and the ensuing capture of the end of dictatorship this year, should give us pause to remember particularly the women who push on through layers of repression, risking all, to demand basic rights.

 

Civil Society Under Attack in Name of Counterterrorism

Active Citizens, Civil Society, Conferences, Development & Aid, Editors’ Choice, Featured, Global, Global Governance, Headlines, Human Rights, IPS UN: Inside the Glasshouse, Peace, Population, Regional Categories, TerraViva United Nations

Civil Society

This article is part of a series on the current state of civil society organisations (CSOs), which was the focus of International Civil Society Week (ICSW), sponsored by CIVICUS, and which took place in Belgrade, April 8-12.

More than 200 civil society leaders and human rights activists from some 100 countries took to the streets of Belgrade, Serbia in solidarity with those whose basic freedoms are at risk. They participated in the International Civil Society Week (ICSW), sponsored by CIVICUS, which took place in Belgrade, April 8-12. Courtesy: CIVICUS

UNITED NATIONS, Apr 15 2019 (IPS) – Counterterrorism measures are not only affecting extremist groups, but are also impacting a crucial sector for peace and security in the world: civil society.


Civil society has long played a crucial role in society, providing life-saving assistance and upholding human rights for all.

However, counterterrorism measures, which are meant to protect civilians, are directly, and often intentionally, undermining such critical work.

“Civil society is under increased assault in the name of countering terrorism,” Human Rights Watch’s senior counterterrorism researcher Letta Tayler told IPS, pointing to a number of United Nations Security Council resolutions as among the culprits.

“Nearly two decades after the September 11 attacks, we are seeing a very clear pattern of overly broad counterterrorism resolutions. We are seeing a clear pattern of violations on the ground that are being carried out in the name of complying with binding Security Council counterterrorism resolutions,” she added.

Just two weeks after September 11, 2001, the UN Security Council unanimously adopted Resolution 1373 which called states to adopt and implement measures to prevent and combat terrorism.

Since then, more than 140 countries have adopted counterterrorism laws.

The newly approved Resolution 2462, passed at the end of March, requires member states to criminalise financial assistance to terrorist individuals or groups “for any purpose” even if the aid is indirect and provided “in the absence of a link to a specific terrorist act.”

While the resolution does include some language on human rights protections, Tayler noted that it is not sufficient.

“It is not sufficiently spelled out to make very clear to member states what they can and cannot do that might violate human rights on the ground,” she said.

Blurred Lines

Among the major issues concerning these resolutions is that there is no universal, legal definition of terrorism, allowing states to craft their own, usually broad, definitions. This has put civil society organisations and human rights defenders (HRDs) alike at risk of detention and left vulnerable populations without essential life-saving assistance.

“I think it is irresponsible of the Security Council to pass binding resolutions that leave up to States to craft their own definitions of terrorism…that’s how you end up with counterterrorism laws that criminalise peaceful protest or criticising the state,” Tayler said.

Oxfam’s Humanitarian Policy Lead Paul Scott echoed similar sentiments to IPS, stating: “The Security Council, by being overly broad, is just giving [governments] the tools to restrict civil society.”

According to Front Line Defenders, an Irish-based human rights organisation, 58 percent of its cases in 2018 saw HRDs charged under national security legislation.

Special Rapporteur on the promotion and protection of human rights while countering terrorism Fionnuala Ní Aoláin found that 67 percent of her mandate’s communications regarding civil society were related to the use of counter-terrorism, and noted that country’s counterterrorism laws are being used as a “shortcut to targeting democratic protest and dissent.”

In April 2018, thousands of people took to the streets in Nicaragua to protest controversial reforms to the country’s social security system.

According to the Office of the UN High Commissioner for Human Rights, over 300 people have been killed, more than 2,000 injured, and 2,000 arrested—some of whom were reportedly subject to torture and sexual violence when detained.

Many of those arrested will also be tried as terrorists due to a new law that expanded the definition of terrorism to include a range of crimes such as damage to public and private property.

At least 300 people, including human rights defenders, face charges of terrorism.

The Central American country said that the law was passed to comply with the Financial Action Task Force (FATF), an intergovernmental body that works alongside the Security Council to combat terrorist financing.

A Civil Society Facing Uncivility

Tayler also pointed to the lack of consequences for States that pass counterterrorism laws that do not abide by their obligations under international law.

In Resolution 2462, member states are told to comply with international humanitarian law when cracking down on terrorist financing but does not require countries to consider the effect of such measures on humanitarian activities such as providing food and medical care.

“In the zeal to be as tough looking as they can possibly can, governments have overlooked very very easy ways to protect those of us who are providing life-saving aid,” Paul told IPS.

The lack of protections for civil society and its impacts was most visible during the 2011 famine in Somalia.

In an effort to restrict “material support” to terrorist groups, countries such as the United States enacted counterterrorism legislation which blocked aid into areas controlled by Al-Shabab.

This not only impeded local and international organisations from doing their job, but one report noted that the constraints contributed to the deaths of over 250,000 people in the East African nation.

The problem has only gotten worse since then, Paul noted.

“The measures imposed by governments are unnecessarily broad and they prevent us from working in areas that are controlled by designated terrorist entities. What they have essentially done is criminalise humanitarian assistance,” he said.

Tunisia has used its terrorism financing laws to shut down a number of civil society organisations.

According to the Euro-Mediterranean Human Rights Monitor, approximately 200 organisations were dissolved and almost 950 others were delivered notices, referring them to courts on charges of “financial irregularities” or “receiving foreign funds to support terrorism” despite the lack of substantive evidence.

Many of the dissolved organisations provided aid and relief for orphans and the disabled.

All Eyes on Deck

Tayler highlighted the importance of the UN and civil society to monitor how counterterrorism resolutions such as Resolution 2462 are used on the ground.

“While we would love to see amendments to this resolution, pragmatically the next best step is for all eyes—the eyes of civil society, the UN, regional organisations—to focus on just how states implement this resolution to make sure that overly broad language is not used by states to become a tool of repression,” she said.

“The UN and leaders of countries around the world should use International Civil Society Week as an opportunity to take stock of the risk that this trend has posed on both to life-saving aid organisations and human rights defenders and to reverse this dangerous trend,” Tayler added.

Paul pointed to the need to educate both the public and policymakers on counterterrorism and its spillover effects as well as the importance of civil society in the global system.

“Civil society is a key part of effective governance. We don’t get effective public services, we don’t get peace, we don’t get to move forward with the anti-poverty agenda if civil society actors aren’t strong and empowered,” he said.

“If governments aren’t careful about protecting our right to stand up for marginalised and vulnerable populations, everyone will hurt. Not just those populations. It will have an effect broadly on our societies,” Paul added.

 

Shining a Spotlight on the Strengths & Challenges of Civil Society in the Balkans

Armed Conflicts, Civil Society, Development & Aid, Europe, Headlines, Human Rights, Population, Press Freedom, TerraViva United Nations

Opinion

This article is part of a series on the current state of civil society organisations (CSOs), which is the focus of International Civil Society Week (ICSW), sponsored by CIVICUS, and scheduled to conclude in Belgrade, April 12.

 
Lysa John, Secretary-General of CIVICUS, in her opening address to the International Civil Society Week (ICSW)

Credit: CIVICUS

BELGRADE, Apr 11 2019 (IPS) – It is an incredible privilege to welcome you all to the ‘International Civil Society Week’. I am going to remind us of the reasons that make it so important for us to be here in Belgrade this week.


This is our 16th global convening of civil leaders and 4th edition of the International Civil Society Week in particular – following on from events held in South Africa, Colombia and Fiji.

Our first World Assembly, as it was known then, was held in Hungary in 1997, and this time we have gathered in the Balkans – and we are very grateful to our peers in Serbia for hosting us.

Serbia currently features on the CIVICUS Monitor’s “Watch List” which draws attention to countries where there are serious and ongoing threats to civic space.

By hosting ICSW 2019 in Serbia, we hope to shine a spotlight on the strengths and challenges of civil society in this region, and find ways to amplify and support their efforts.

Civic freedoms are currently under attack in 111 countries. In other words, over six billion people face serious challenges in the exercise of freedoms of expression, association and peaceful assembly which are essential to an empowered and enabled civil society.

There is a continuing crisis facing civil society organisations and activists across the world – a global civic space emergency. Our job is to find ways to ensure this does not become the ‘new normal’.

We cannot be the generation that lost the fight to protect civic freedoms and democratic values. We owe the citizens, civic leaders and communities of the future a significantly stronger basis to organise for and achieve their rights.

There aren’t many people in the world who can genuinely claim to wake up every morning thinking about how to make the world a more just, more honest and more compassionate place. And yet, we have close to 1,000 people in this very room who do just that.

With over 900 delegates from 100+ countries gathered here, you can safely expect to meet every major form of civil society that works to defend and promote human rights worldwide – ranging from community groups, social entrepreneurs, academic organizations, campaigning networks, think tanks and foundations — in one place over the next few days.

We have the opportunity to connect lessons and inspirations while we are together here. Yet it is the changes that we will test and activate when we return to our personal and professional spaces that make being here worthwhile.

This could be refreshed strategies to challenge discrimination and exclusion or new ways to demonstrate innovation and accountability as a sector.

Our deliberations must reflect the urgency and intent required to make the changes we need to see in the real world – and in this gathering right here we have exactly the kind of determination and optimism needed to see this through. Thank you for being here – we wish you a truly inspired week!

I cannot end without thanking again our hosts in Serbia, Civic Initiatives and the Balkans Civil Society Network, for their warm and generous hospitality without which we wouldn’t be here.

A special mention is also due to the hosts of the previous ICSW held in Fiji – the Pacific Island NGO Forum – who are also here. Thank you for the lessons and achievements of our last gathering, which has enabled us to be more prepared and more ambitious this year.

 

Attacks on Media in the Balkans Sound Alarm Bells for Democracy

Armed Conflicts, Civil Society, Development & Aid, Europe, Featured, Headlines, Human Rights, Population, Press Freedom, TerraViva United Nations

Opinion

This article is part of a series on the current state of civil society organisations (CSOs), which is the focus of International Civil Society Week (ICSW), sponsored by CIVICUS, and scheduled to conclude in Belgrade, April 12.

 
Susan Wilding is the head of the Geneva office at CIVICUS, a global alliance of civil society organisations.

GENEVA, Apr 11 2019 (IPS) – Anti-government protesters invading Serbia’s state-owned television station, demanding that their voices be heard. Journalism bodies writing to the Albanian prime minister over plans to censor online media outlets. A Belgrade corruption-busting reporter forced to flee his house that had been torched; a Montenegrin investigative journalist shot in the leg outside her home.


These are just some of the violations emerging from the western Balkans as a clampdown on media freedom – and civil liberties – undermines Serbia’s and Montenegro’s bids to join the European Union.

It’s little wonder that Serbia tumbled 10 spots to rank 76th on the 2018 Reporters without Borders Press Freedom Index, which states bluntly: “Serbia has become a country where it is unsafe to be a journalist.” Its neighbours fare little better: Albania is in 75th place, Kosovo is ranked 78th and Montenegro is a dismal 103rd.

Smear campaigns against courageous journalists; impunity for those assaulting media players; collusion between politicians and brown-envelope reporters; high levels of concentration of media ownership in a few hands; threats of cripplingly expensive litigation; the chilling effect of self-censorship on reportage. The list of media abuses in the Balkans goes on and on.

Belgrade, Serbia is playing host to International Civil Society Week, running thro Friday April 12, bringing together over 900 delegates to debate solutions to some of the world’s most pressing challenges. Some of the questions on the agenda will be: What more can we, as civil society, do to ease this stranglehold on free expression? How can we raise our voices to protect individual and media liberties?

Such restrictions on the media are incompatible with participatory democracy, which depends on three fundamental human rights – freedom of peaceful assembly, freedom of association and freedom of expression – which are also protected under international law. Any government that claims to have free and fair elections, and claims to be a democracy, cannot deny its citizens access to information and the right to be heard.

According to findings by the CIVICUS Monitor, an online platform that tracks threats to civil society in 196 countries, states are generally using two types of tactics to restrict civic freedoms, and the crack down on media freedoms is no exception.

The first is legal: imposing or enforcing laws that restrict democratic freedoms and criminalise free speech. For example, this includes bringing trumped-up judicial charges against journalists or media houses, thereby diverting energy and resources from watchdog journalism.

The second type comes in the form of extrajudicial means and are even more contemptible: including intimidating the media into submission through carefully coordinated smear campaigns and public vilification, and sometimes through physical intimidation and outright repression.

While such states may make an elaborate show of using (or abusing) the laws of the land to rein in the media, such censorship is clearly a perverse parody of democracy – an expression of a growing trend in which the ‘rule by law’ replaces the rule of law.

Sometimes these attacks on media are coming from “strongmen” leaders with the ambition of concentrating power and eliminating any checks and balances. In other instances, we see these kinds of restrictions imposed by governments that feel threatened and see media clampdowns as another way to hold onto power.

A weakened state or leaders who came to power through dubious means or with a small majority are likely to mute the civic space to cling to power. It may therefore, not be surprising that it’s happening in the Balkans, given the area’s fraught political history.

When popular dissent swells against unpopular policies and actions, a vulnerable state’s first target is the media, because of their potential role in unseating power. It is also something we see as a classic copy-and-paste tactic: questionable leaders see their regional neighbours getting away with it, with few if any repercussions, and follow suit.

Even the online space – the ultimate democratic arena of the 21st century, where the gladiatorial thrust and parry of views is essential to robust debate – is not being spared in this battle to seize ideological control of the marketplace of ideas.

Some countries have already shown that it’s entirely possible to shut down or control social media platforms, denying citizens their fundamental right to participate in debate and in policymaking.

The reasons that States give for silencing media vary but often include similar statements such as journalists are writing “defamatory” articles or disseminating “fake news”. Often, they maintain, the reportage is “unpatriotic”, “goes against our culture or values” or “does not advance our nationalist agenda”.

With the restrictions on media freedoms increasing in the Balkans, we should be highlighting the situation and sharing tried and tested strategies for pushing back and opening the space for a free and independent media.

We should be concerned that the world so easily shifted its attention away from the region after the terrible conflict that claimed so many lives 20 years ago. Why did we not linger a while to monitor the aftermath? Do we turn a blind eye to human rights abuses, as is the case in China and elsewhere, as long as there is peace, development and economic prosperity?

 

Smears, Laws, Lack of Cooperation: Tools Against Activists

Active Citizens, Civil Society, Conferences, Europe, Featured, Global, Headlines, Human Rights, IPS UN: Inside the Glasshouse, Population, Regional Categories, TerraViva United Nations

Civil Society

This article is part of a series on the current state of civil society organisations (CSOs), which will be the focus of International Civil Society Week (ICSW), sponsored by CIVICUS, and scheduled to take place in Belgrade, April 8-12.

Michel Forst, Special Rapporteur on the situation of human rights defenders next report will focus on impunity, as only about 5 percent of attacks on rights defenders have been investigated and the perpetrators “brought to justice”. Credit: AD McKenzie/IPS

BELGRADE, Apr 10 2019 (IPS) – The murder of Brazilian politician and human rights activist Marielle Franco just over a year ago and attacks on other rights activists around the world have galvanised civil society organisations, with the United Nations heightening its own strategy to protect rights defenders.



However, some countries aren’t interested in cooperating with civil society or international governmental bodies and even actively engage in smear campaigns against rights advocates.

“An increasing number of states have now refused to cooperate with the UN,” said Michel Forst, Special Rapporteur on the situation of human rights defenders, in the Office of the United Nations High Commissioner for Human Rights.

“They don’t want to invite any more special rapporteurs to visit the countries or to produce reports,” he told journalists at a press briefing during International Civil Society Week (ICSW 2019), an annual gathering of civil society leaders, activists and citizens taking place in the Serbian capital this week, Apr. 8-12.

The meeting – co-hosted by the Johannesburg-based global civil society alliance CIVICUS – has brought together more than 850 delegates who are focusing on issues ranging from “the crackdown on media freedom to emergency assistance for NGOs under attack”. It is also addressing the “power” of solidarity alongside greater accountability.

Forst said he was attending the event to learn from the participants. His next report, to be presented during the UN General Assembly in the fall, will focus on impunity, as only about 5 percent of attacks on rights defenders have been investigated and the perpetrators “brought to justice”, he told journalists.

A growing problem in protecting rights defenders is the way in which some states try to defame activists, Forst said. In regions from Europe to Latin America, there are on-going campaigns to discredit rights advocates, and public opinion can be influenced by the derogatory terminology.
“These campaigns are dangerous for defenders,” he said. “They are called ‘enemies of the state’, they are called ‘promoters of western values’, they are (said to be) ‘against development’.”

In some countries, activists are also accused of having links to terrorism and of opposing progress when they try to block projects that are disastrous for the environment or for indigenous peoples.

“What is also a matter of concern for me is that these campaigns are led by politicians, by political actors, prime ministers, ministers of foreign affairs, ministers of defence,” Forst added.

He said the Belgrade ICSW meeting was important for activists to see that what is happening in their home country or region may also be taking place elsewhere, so that they can try to build bridges and strengthen links.

The meeting has in fact highlighted similarities in methods of repression around the world – methods that include not only physical attacks, but surveillance, travel bans, on-line harassment and the use of government structures and legislation to try to suppress freedoms.

Even as the ICSW meeting takes place, rights organisations elsewhere have been issuing alarms about breaches of civic and media rights. Separately from the event in Belgrade, rights organisation PEN America on Apr. 9 warned that the “Trump administration’s targeting of journalists has reached a new level”.

The group pointed to reports from the U.S.-Mexico border (and leaked documents from a Department of Homeland Security whistle-blower) indicating that “U.S. government agencies have been tracking and monitoring over 50 individuals, mostly journalists and immigration advocates, as they report on the humanitarian situation” at the U.S. southern border.

Government entities have reportedly participated in the “tracking and monitoring of these journalists, including the creation of a U.S. government database containing sensitive personal information”, PEN America said. The group called the database “a shocking and unwarranted violation of journalists’ First Amendment rights” and “an appalling violation of press freedom”.

In France, meanwhile, the national branch of Amnesty International criticised a French “anti-riot” law that could threaten freedom of assembly and expression. The law, adopted by parliament, would allow police to systematically search protestors, and, despite certain assurances, it “remains a serious infringement on public freedom and the balance of power”, Amnesty France stated Apr. 9.

The law comes as France’s Gilets Jaunes (or Yellow Vests) continue their protests, with thousands marching on Apr. 6 in Paris and other cities for the 21st weekend in a row. Certain lawmakers say the legislation is necessary to prevent further destruction of property and life-threatening fires started by protestors during some of the demonstrations.

But France also uses other legislation “to target those defenders who are trying to help and rescue migrants coming to Europe via the Mediterranean sea,” said Forst, who is French.
“We’re seeing more and more the criminalisation of (rights) defenders”, through the use of the law, he said.

In Serbia, anti-government demonstrators are set to intensify their actions Apr. 13 — the day after ICSW 2019 ends — with what promises to be the biggest gathering since protests began last December.

Protestors are calling for free and fair elections and greater media freedom. (Last month some forced their way into the offices of Serbia’s state-run television network, to show dissatisfaction with what they called one-sided reporting.)

At the opening ceremony of ICSW, Serbian activists slammed President Aleksandar Vučić for repressive policies, often without naming him, and some called for protection of the media.

“We will stand up for freedom of journalists… the freedom not to be threatened in any way,” said Maja Stojanovic, of Serbian organisation Civic Initiatives, a co-host of the meeting.

Ahead of ICSW, Serbia was added to a watchlist of “nations where civic freedoms are under serious threat”. The watchlist – released by the CIVICUS Monitor, an online platform that tracks threats to civil society across the globe – said Serbian authorities have “orchestrated a smear campaign against demonstrators, labelling government opponents as ‘paid’ activists working against Serbian interests”.

The confused and disquieting developments in many countries further highlight the need to find cross-border solutions and to create links between rights defenders, Forst said.

The European Union, for instance, has guidelines for embassies of member states abroad on “how to protect rights defenders”, and funding is available for embassies to relocate individuals at risk, Forst told reporters. In addition, a network of shelter cities exists (the number of these is growing with continued attacks).

But it is difficult to relocate at-risk female activists who may have children, and here, too, there is often lack of cooperation or agreement on asylum requests.

While some countries can effectively help rights defenders in far-off regions, they seem powerless when it comes to their own neighbours.

Still, defenders are becoming “more efficient” in forming local, national and international networks, Forst said. “It is a battle … solidarity is important.”

He said the good news is that some countries that were “blocked in the past” are now granting access to international bodies to help protect defenders and to end impunity.

In contrast to states like the Philippines that are dangerous for rights defenders and don’t wish to “do anything to solve the problem”, other countries “like Mexico, Colombia, Honduras, Brazil now – maybe – do recognise, because of the number of killings … that they need to solve the problem,” Forst added.

In Brazil, meanwhile, activists and others are still asking: who killed Marielle Franco?

 

People Affected by Leprosy in Latin America Unite for Their Rights and Their Voice

Active Citizens, Civil Society, Conferences, Development & Aid, Editors’ Choice, Featured, Global Governance, Headlines, Health, Human Rights, IPS UN: Inside the Glasshouse, Latin America & the Caribbean, Population, Regional Categories, TerraViva United Nations

Health

Family photo of part of the 111 participants in the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen's Disease, on the steps of the Morisco Palace, the headquarters of the Oswaldo Cruz Foundation, which hosted the three-day meeting in Rio de Janeiro, Brazil. Credit: Mario Osava/IPS

Family photo of part of the 111 participants in the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s Disease, on the steps of the Morisco Palace, the headquarters of the Oswaldo Cruz Foundation, which hosted the three-day meeting in Rio de Janeiro, Brazil. Credit: Mario Osava/IPS

RIO DE JANEIRO, Mar 14 2019 (IPS) – With the decision to found a regional coalition to promote rights and greater participation in national and international forums and decisions, the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s disease, popularly known – and stigmatised – as leprosy, came to an end.


The final session of the meeting, on Mar. 14, approved 40 of the 58 proposals presented by the 111 participants in three days of debates at the headquarters of the Oswaldo Cruz Foundation, a renowned scientific, medical and epidemiological research centre in Rio de Janeiro, Brazil.

José Picanço, 46, separated from his family and taken as a newborn to an orphanage because his parents were diagnosed with the disease in 1972, is one of those affected whose right to reparations remains unfulfilled. His three siblings are in the same situation.

When the family was reunited eight years later, the father turned his back on the children. The mother took them in, but died shortly afterwards. “I only lived with her, a saint, for five months,” Picanço recalled, barely managing to hold in his tears while giving testimony at the meeting.

“Humiliated as the children of lepers, suffering bullying and sexual harassment, many of the other children who were with me at the orphanage fell into drug abuse and alcoholism. It was a holocaust,” he said. “I hit my brother on the head, not knowing he was my own brother.”

“Of the 15,000 to 20,000 children separated from their families, more than 80 percent suffer from depression,” said Picanço in an interview with IPS, detailing some of the damage caused by the old rule of segregating the people then called “lepers”.

Mandatory isolation was widespread around the world, during different historical periods, and continues in some countries, even though it is known that the disease is curable and that patients cease to be contagious shortly after starting treatment.

Officially, Brazil abolished this practice in 1976, although it actually lasted 10 more years. Its direct victims were compensated starting in 2007, but their children were not. The activists gathered in Rio de Janeiro called for working for policies of reparations for children separated from their families.

Their complaints and proposals will be taken to the World Congress of associations of people affected by leprosy in Manila in September, which will also receive contributions from Africa and Asia, approved at recent similar regional assemblies.

“The goal is to form a large network of activists, to strengthen the movement” for the eradication of the disease and for care and reparations for those affected, said Kiyomi Takahashi of the independent Nippon Foundation, which is driving this international process of debate and cooperation.

The meeting in Rio de Janeiro fostered “a high-level dialogue, the result of Morhan and Felehansen’s long history of activities,” the Japanese expert told IPS, referring to the Movement for the Reintegration of People Affected by Hanseniasis (Morhan) in Brazil, and the National Federation of Entities Affected by Leprosy or Hansen’s Disease (Felehansen) in Colombia, the two organisers of the regional meeting.

Brazilian activists José Picanço (front) and Evelyne Leandro testified about how Hansen's disease affected them during a Latin American and Caribbean meeting in Rio de Janeiro. Picanço was separated from his parents when they were diagnosed with leprosy when he was born in 1972 and was only reunited with them eight years later, shortly before his mother died. Leandro wrote a book about the difficulties of being diagnosed with the disease in Germany, where she lives. Credit: Mario Osava/IPS

Brazilian activists José Picanço (front) and Evelyne Leandro testified about how Hansen’s disease affected them during a Latin American and Caribbean meeting in Rio de Janeiro. Picanço was separated from his parents when they were diagnosed with leprosy when he was born in 1972 and was only reunited with them eight years later, shortly before his mother died. Leandro wrote a book about the difficulties of being diagnosed with the disease in Germany, where she lives. Credit: Mario Osava/IPS

“Morhan is my safe haven, to preach that separated children should be heard and have opportunities,” said Picanço, who explained that he joined the movement in 1992. Today he gives talks on the direct and indirect effects of the stigma still surrounding the disease, that is suffered by those affected and their families.

A blessing

The disease “was a blessing for me,” Isaias Dussan Weck, 50, the vice-president of the Colombian association Felehansen, told IPS without hesitation.

The diagnosis in 2006 destroyed him, he said. He lost the desire to work or to go out, he let his business of supplying cleaning products to companies go bankrupt, he even contemplated suicide. He ignored the stains on his body that did not prevent him from working and traveling, until they spread to his face, and he noticed that parts of his body were going numb.

He received treatment and was cured, left with only slight numbness in one arm and pains in his left leg.

But everything went badly for him until he was invited to meetings with other people affected by leprosy. “I began to understand, when I heard their testimonies and tears, why a young black girl with severe disabilities said that leprosy was a blessing to her,” Dussan said.

Activism for the benefit of those affected, against the stigma and the damage caused by the disease, in the association of the department of Huila, in southwestern Colombia, allowed him “to gain new meaning for life and to understand and practice love for my neighbour.”

“Helping and seeing a patient’s life improve is a wonderful emotion, and you help other people want to live,” he concluded. That new passion led him to Felehansen, where he took on leadership roles in the federation.

Irma Romero, 42, president of the Nuevo Amanecer Foundation in Barranquilla, on Colombia’s northern coast, had a similar experience. Her lengthy odyssey to a specialist’s diagnosis five years ago reveals the medical system’s shortcomings when it comes to detecting and treating the disease, also known as hanseniasis, which is still viewed by many as “a divine punishment.”

Romero stopped working in the textile industry due to disability and depression. “I couldn’t even walk,” she recalled. “I even denied God,” she told IPS.

Colombian activist Irma Romero, a native of the city of Barranquilla, sitting on the bus that transported the participants of the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen's Disease, held Mar. 12-14 in Rio de Janeiro, Brazil. Credit: Mario Osava/IPS

Colombian activist Irma Romero, a native of the city of Barranquilla, sitting on the bus that transported the participants of the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s Disease, held Mar. 12-14 in Rio de Janeiro, Brazil. Credit: Mario Osava/IPS

Treatment using medicinal herbs, self-medication, rejection by relatives, attempts to separate her from her two children and abandonment by her husband all formed part of her suffering, which did not end with her treatment and cure.

The only permanent physical effects are numbness in her hands and feet, and sciatic nerve pain. But the discrimination continued.

“My life changed when I joined the association of affected people” four years ago, she said. “There I found people who had things in common with me, and a newfound love of my neighbour that I did not feel before,” said the activist, who became president of the Foundation the following year and reconciled with God.

Her foundation currently has 60 members. In Barranquilla she estimates that there are “about 200 affected people, but many more are hidden.”

The foundation is one of the 10 associations that make up Felehansen, eight of which call the disease hanseniasis or Hansen’s disease, one of which uses the term leprosy, and another of which refers to disabled people and is made up of patients who received a very late diagnosis.

The World Health Organisation (WHO) defines leprosy – the term it uses – as an infectious and chronic disease “transmitted by air through droplets from the nose and mouth, during close and frequent contacts with untreated cases.” It also specifies that leprosy is “one of the least infectious diseases.”

WHO reports that in 2017 there were 211,009 new cases worldwide, according to official data from 159 countries. That amounts to 0.3 cases per 10,000 inhabitants, which means it classifies as having been “eliminated,” according to WHO criteria.

Change of name: another recommendation

Proposing hanseniasis as the official name for the disease is one of the proposals that came out of the Latin American meeting, headed by Brazil, which has already adopted it, even prohibiting the mention of leprosy in the health system since 1995.

They are different concepts, because leprosy and leper have very negative connotations of “dirt, plague, impurities and divine punishment,” strengthened by numerous mentions with that moral burden in the Bible, argued Faustino Pinto, one of Morhan’s national coordinators.

But the activists from Colombia are not convinced. “People only know leprosy, they don’t know it’s Hanseniasis. To explain the issue to the population, you have to mention leprosy,” argued Romero.

“It will be necessary to educate the new generations about the concept of Hansen,” the Norwegian doctor Gerhard Hansen who discovered the bacillus that causes the disease, because adults are not likely to forget the stigma, said Dussan. “It’s harder to unlearn than to learn,” he added.

Another proposal of the Latin American Assembly is to extend the current Committee for Assistance to Brazilian Immigrants Affected by Hanseniasis to all Latin Americans and people from the Caribbean, in addition to extending it to other regions.

The reference point in this is Evelyne Leandro, a 37-year-old Brazilian who has lived in Germany for nine years and had a lot of difficulties getting diagnosed with the disease in a country where it is very rare and where very few doctors are familiar with it.

She was helped by her mother’s suspicion, awakened in Brazil by an outreach campaign on the disease, and by the Institutes of Tropical Medicine in Germany.

Her case and those of other immigrants in Europe are recounted in her book “The Living Death: the struggle with a long forgotten disease”.