Shahd, a 12-year-old girl with a hearing disability, stands in front of a window facing her father, in the house her family live in, Azaz, Aleppo, Syria. Credit: Human Rights Watch.

By Emina Ćerimović
NEW YORK, Feb 28 2023 (IPS)

A few days ago, I saw a photo shared to Twitter of Sham, a young Syrian girl rescued from under the rubble in northwest Syria, sitting upright in her hospital bed, According to the Syrian Civil Defense, a volunteer humanitarian group also known as the White Helmets, Sham will lose both her legs because of injuries from the quake.

Looking at her photo, I couldn’t help but think of the additional human rights abuses Sham will experience on the basis of her disability. She will join the ranks of all the children with disabilities who are surviving the 12-year-conflict in Syria without equal access to humanitarian aid.

And so will others who experienced traumatic physical and psychological injuries in the wake of the earthquakes: a girl who had spent 30 hours under the rubble in the heavily affected town of Jindires in northwest Syria and who had lost both her legs; a 3-year-old boy in Jinderis who was trapped for 42 hours and whose left leg was amputated; a young Syrian man living in Gaziantep, Turkey, whose right hand was amputated.

In Syria, approximately 28 percent of the current population – nearly double the global average – are estimated to have a disability, and their rights and needs are largely unmet

As issues of humanitarian aid access to various affected parts of Syria dominate the news, relief efforts should not overlook the short and long-term needs of people with disabilities and the thousands of earthquake survivors who have sustained physical and psychological injuries that could lead to permanent disabilities.

As two more powerful earthquakes struck the region on February 20, panic and fear spread among earthquake survivors in both Syria and Turkey, bringing into sharp focus the psychological trauma caused by the natural hazard and, for Syrians, by over 12 years of war.

In Syria, approximately 28 percent of the current population – nearly double the global average – are estimated to have a disability, and their rights and needs are largely unmet. As I found in my September report on the greater risk of harm and lack of access to basic rights for children with disabilities caught up in the Syrian war, the design and delivery of humanitarian programs in Syria are not taking into account the particular needs of children with disabilities. In some cases, such programs explicitly exclude them.

As an example, some educational activities and child-friendly spaces excluded children with intellectual and developmental disabilities. Children with disabilities are growing up without safety, basic necessities, education, assistive devices, or psychosocial support, in ways that put their lives and rights at risk.

They experience stigma, psychological harm, and higher levels of poverty. The situation is no better for adults with disabilities who also face systematic challenges in accessing humanitarian services on an equal basis with others.

This crisis should serve as a wake-up call for UN agencies, donor states, humanitarian organizations, and charities to properly respond to all children’s rights by ensuring the rights and needs of children with disabilities are also met.

They should develop and implement their response and recovery action plans with people with disabilities at their core. The attention and investment in children – like Sham – and adults with disabilities will enhance human rights for everyone.

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A man’s legs chained in a Christian rehabilitation center in Ibadan City, Oyo State, Nigeria, Ibadan City, Oyo State, Nigeria, September 2019. Women and men are chained and tied for perceived or actual mental health condition or intellectual disability. © 2019 Robin Hammond for Human Rights Watch.

By Emina Ćerimović and Kim Samuel
NEW YORK, Apr 7 2020 (IPS)

When Akanni’s mother died in early 2018, she stopped eating for three weeks. Her mood became unpredictable; she was often shouting or sulking angrily. Medicine from a local pharmacist didn’t help. At a loss for what to do to handle the trauma, Akanni’s father took her to a church in Abeokuta, Ogun state, in Nigeria. And then he left her there.

The evangelist in the church chained her in a room, where she was left on a bare floor for three days straight with no food or water. She stayed there with a man who was going through a mental health crisis. She felt alone. The staff gave Akanni a pot to urinate and defecate in, right in front of the man.

Human Rights Watch documented that thousands of people with actual or perceived mental health conditions across Nigeria are chained and locked up in various facilities, including state-owned rehabilitation centers, psychiatric hospitals, and faith-based and traditional healing centers

Akanni is still imprisoned in the church. She is deprived of food and water every Monday, Wednesday, and Friday until 6 p.m. The staff at church claim this is for fasting purposes as part of her treatment. When she resists, they chain her again.

“Sometimes if they say I should fast and I drink water or take food, they put me on chain,” she told our researchers. “The chaining is punishment. I have been put on chain so many times, I can’t count.”

Akanni is not alone. Human Rights Watch documented that thousands of people with actual or perceived mental health conditions across Nigeria are chained and locked up in various facilities, including state-owned rehabilitation centers, psychiatric hospitals, and faith-based and traditional healing centers.

Many are shackled with iron chains, around one or both ankles, to heavy objects or to other detainees, in some cases for months or years.

Chaining is a global human rights issue. Human Rights Watch has documented its use in numerous countries, including Indonesia, Ghana, Somaliland, and most recently Nigeria.

Like Akanni, people cannot leave these facilities, and are confined in overcrowded, unhygienic conditions, and forced to sleep, eat, and defecate within the same confined place. Many are physically and emotionally abused and forced to take questionable treatments.

People are chained for a range of reasons: when they behave outside what’s considered “the norm,” are going through trauma or grief, or even for getting upset. Like Akanni, who never had access to mental health professionals before her father abandoned her at the church, most Nigerians are unable to get adequate mental health services or support in their communities and rely on traditional and religious healers for support.

A woman’s leg tied tightly together in a Christian rehabilitation center for in Ibadan City, Oyo State, Nigeria, September 2019. Women and men are chained and tied for perceived or actual mental health condition or intellectual disability. © 2019 Robin Hammond for Human Rights.

Stigma and misunderstanding, specifically ideas that mental health conditions are caused by evil spirits or supernatural forces, drive relatives to take their loved ones anywhere the relatives think their loved ones could get help.

Signs of light are appearing. In October, President Muhammadu Buhari denounced chaining as torture, and the Nigerian police carried out raids in Islamic rehabilitation centers in the northern part of the country. Although the Nigerian Constitution prohibits torture and other inhuman or degrading treatment, the government has yet to outlaw chaining people with mental health conditions. The government has also yet to acknowledge that chaining is happening in government-run facilities as well as traditional and other religious centers that are not Islamic.

Today,  as the world  grapples with the COVID-19 pandemic, it is more important than ever to end this practice, free people from chains, and ban shackling.

Banning chaining is just the first step. It’s also necessary to monitor and meaningfully enforce the ban. Further, it’s essential to prioritize providing psychosocial support and mental health services as close as possible to people’s own communities.

Humane and accessible care need not be extraordinarily expensive. To give one example, cities and countries around the world are now following the Zimbabwean model of the “Friendship Bench,” a community-led initiative that trains and supports older women to offer talk therapy and make connections to vital social services and mental health care.

Article 5 of the United Nations Universal Declaration of Human Rights is clear that “no one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.”

But this is more than a violation of the law. When asked what’s worst about being in the church, Akanni was unequivocal. “I feel lonely,” she said. Chaining represents the most extreme imaginable denial of our fundamental human rights.

It strips people of the basic need to belong, connect with community, have a home, learn, express oneself, have agency. It’s an affront to the essence of what makes us human.

Akanni told us she wants to go home, study accounting, get a job, and lead a healthy and joyful life. It’s up to President Buhari, leaders and civil society in Nigeria, and all of us who can exert pressure around the world, to see that she and countless others have a meaningful chance to realize these dreams.

Kim Samuel is founder of the Samuel Center for Social Connectedness, based in Toronto.

Emina Ćerimović is a senior disability rights researcher at Human Rights Watch.

By Emina Ćerimović
NEW YORK, Feb 27 2017 (IPS)

The day I met Julija she was playing cheerfully with her baby sister on the floor inside their room in Kragujevac, a small town in southern Serbia. When she saw me – a stranger — on the doorstep, she smiled widely and stretched out her hands, offering a hug. As I held her, I could hear how difficult it was for her to breathe. I looked at her, she smiled and touched my face with her hands and only then did I see that Julija’s fingers were webbed.

Julija was born with Apert Syndrome, a rare genetic condition. Children with this syndrome have fused skull bones, resulting in distorted facial features, vision and hearing loss, trouble with breathing and eating, and learning difficulties. In Julija’s case her fingers and toes were not separated either, which made holding a spoon or picking things up difficult.

Her parents – Jasmina and Ivica – told me about their struggle to provide Julija with the health care she needed to stay alive and to develop. For three months following Julija’s birth in 2012, her parents used every penny they had to ferry their daughter across the country in search of specialists who could help. The repeated advice they received was not helpful: Place your child in an institution. It’s best for you and her. “One doctor even told us that it will be a torment for us to keep her with us and that we might not get anything back in return,” Jasmina told me. “As if my child was a burden for me. None of these doctors were thinking about what is best for the child.”

Emina Ćerimović. Photo Courtesy of HRW

By the time she was barely older than 3 months, Julija had undergone surgery twice on her head and had spent a month in intensive care with pneumonia. Because of her severe breathing problems and her need for frequent specialist treatment that Julija could not receive in her hometown, her parents decided, with heavy hearts, to place her in an institution for children with disabilities in Belgrade, Serbia’s capital, where she would have access to emergency care.

However, after only two days, her parents noticed a drastic change in Julija’s spirit. “She was no longer the child she used to be,” Jasmina told me.

After Julija spent 10 months in the institution with only short visits home, Jasmina and Ivica decided to bring her  back home. “When Julija is at home with us, she is one child, and when she is in an institution, she is a different child,” Jasmina said. “She has made much more progress [at home], in terms of her weight and everything else. Her intellectual development, too.”

With Julija back home, her parents worked tirelessly to find help. Ultimately, a relative in Australia made contact with a specialist at the Australian Craniofacial Unit in Adelaide. Supported by private fund raising efforts and the unit itself, in 2015, Juljia underwent life-changing surgery to reshape her skull to make more room for her brain.

When I met Julija in November 2015, surrounded by her loving parents, toys, and a baby sister, she was thriving and happy. Her parents told me she had put on weight and learned to sit, which she was unable to do when her parents brought her back from the institution. A few months after my visit she learned to walk  on her own. In November 2016, her fingers were unwebbed in a hospital in Belgrade.

A child’s ability to access health care needed for survival and development should not have to depend on their parent’s ability to fight for it. Every child has a right to health and health services.
However, Julija’s journey has only just begun. She will need professional support to learn to use her fingers. Her teeth are not growing properly. She still needs another facial and skull operation. She understands everything, her parents told me, but she doesn’t speak yet. And her breathing and her eyes have to be managed constantly.

Julija was not the only child I met in Serbia who was struggling to get much-needed health care. Hundreds of children with developmental disabilities, the majority of whom have a living parent,  are placed in large residential institutions where  they are separated from their families.  Unlike Julija, they don’t have someone who is working tirelessly to ensure their lives are the very best they can be. Instead, they are often neglected because there is not enough staff, and in some cases confined to beds for their entire lives, without any stimulation. Long-term placement of children in institutions leads to  stunted physical, intellectual, emotional, and social development.

A child’s ability to access health care needed for survival and development should not have to depend on their parent’s ability to fight for it. Every child has a right to health and health services.

On February 28, more than 80 countries worldwide are marking the tenth international Rare Disease Day, including Serbia. The Serbian government – and every government around the world– should mark this day by committing to provide all children with disabilities access to the health care they need to stay alive and to grow and develop just like other children. Julija – who was deemed a hopeless case at birth – just celebrated her fifth birthday with family and friends.

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By Emina Ćerimović
NEW YORK, Jul 6 2015 (IPS)

Last week, I went to see the new flick “Love & Mercy,” about the life of Brian Wilson, a singer, songwriter, and the genius behind The Beach Boys. I hadn’t heard much about the film. In fact, I was expecting a summer movie about surfing and fun; The Beach Boys playing Kokomo, Good Vibrations, and Surfin’ U.S.A. on sunny California  beaches.

Emina Ćerimović. Photo Courtesy of HRW

I was wrong. Instead, lives of hundreds of people I’ve met unfolded on the screen.

Love & Mercy depicts Wilson in two narratives: in the first, he is portrayed at the height of his fame as the leader of The Beach Boys in the 1960s. The second features a middle-aged Wilson misdiagnosed with paranoid schizophrenia by Eugene Landy, Wilson’s therapist and legal guardian.

In the movie, Landy keeps Wilson heavily medicated as he controls every aspect of his life, including his finances, residence, family relationships and social interactions, and other basic life decisions. In one scene, Wilson talks about not speaking to his mother and daughters for years because Landy “doesn’t think it is a good idea.”

In another, Landy tells Wilson when and how much he should eat and whom he should date. Landy himself explains his influence:  “I’m the control. He is a little boy in a man’s body… It is my job, my duty to approve everyone Brian is spending time with.”Ivan and Tatjana told me that they did not consent to their confinement to an institution. They were, in fact, never asked about their preferences, wishes and wants.

Wilson did not argue against Landy taking charge for fear that Landy would have him committed to an institution. As Wilson explains in the movie: “I can’t do that [disobey Landy]. He is my legal guardian. He can do things to me… He can send me away… There’s no way out.”

As the movie unfolded, it wasn’t solely Wilson’s story that I saw on the screen. I was reminded of Tatjana and Ivan, whom I met in Croatia. They are among the 18,000 people with disabilities placed under guardianship there and denied their right to make decisions about their lives.

More than 90 percent live under full guardianship, under which the guardians – often nominated by the government – make all life decisions for them.

Tatjana was diagnosed with schizophrenia in her early 30s, deprived of her legal capacity and placed under guardianship. She is now 47 but can’t visit her daughter or her mother without the permission of her guardian – in her case, a social worker.

It is the same if she wants to move to another house, get married, sign an employment contract, make health care decisions, or even officially publish her poems. Tatjana lived for nine years in an institution against her will because her legal guardian placed her there.  

Ivan is 30 and was diagnosed with mild mental health problems. He was just 16 when he was placed indefinitely in Lopaca, a psychiatric hospital where 168 people, including 20 children, are confined. He still lives there.

Ivan and Tatjana told me that they did not consent to their confinement to an institution. They were, in fact, never asked about their preferences, wishes and wants. Both of them were stripped of their right to make decisions about their lives and appointed legal guardians.

Neither Tatjana nor Ivan was present during the court proceedings determining their legal capacity so they could  provide their input for this major decision about their life.  While guardians are supposed to only oversee decisions with legal consequences, such as signing contracts, in Croatia – just like what was depicted in Love & Mercy –guardians can monitor and control every move a person makes.

I saw firsthand that people with disabilities trapped in institutions in Croatia can experience a range of abuses including verbal abuse, forced treatment, involuntary confinement in hospitals, and limited freedom of movement.

At a pivotal point in the movie, Landy forbids Wilson and Melinda Ledbetter, his current wife, from seeing each other. That triggers Ledbetter, the true heroine of the movie, to intensify her efforts to free Wilson from Landy’s control. She learns that Wilson’s will would have awarded the vast majority of his wealth to Landy. The good news: Wilson’s family files a lawsuit successfully challenging the guardianship.

Sadly, there are no heroines to free Tatjana or Ivan of their guardians. There is a chance of a happy ending though. Croatia, unlike the U.S., has ratified the U.N. Disability Rights Treaty, which requires governments to move away from guardianship and instead provide a system of assistance and support for decision-making that respects the autonomy, will, and preferences of the person with the disability. Croatian laws, however, don’t reflect this.

Key policymakers in the Croatian government should see “Love & Mercy.” Maybe then they will abolish Croatia’s guardianship regime and provide a wide range of support measures. Who knew that The Beach Boys’ influence could go so far beyond their music?

Edited by Kitty Stapp

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