Globally, more than one billion people live with a disability; that’s one in six people.

In 2013, Human Rights Watch became the world’s first international human rights organization to create a dedicated team to investigate and expose the often hidden abuses experienced by people with disabilities, and advocate for their rights. We’ve expanded this work to include the rights of older people, given that millions of older people around the world experience ageism and abuses every day.

Recognizing that they are leading agents of change, we partner with people with disabilities, older people and their respective organizations across the globe, in line with the motto, “Nothing About Us, Without Us”.

We have been led, inspired, and transformed by the experiences and stories of people with disabilities and older people we have met and collaborated with as we work toward a world where every person is treated as an equal human being, fully enjoying their human rights and dignity.

Sodikin, a man with a psychosocial disability (or mental health condition) was locked in a tiny, thatched shed—just two meters wide—outside his family home in West Java, Indonesia for more than eight years. Without community mental health services, his family felt they had no choice but to hide him away.

Around the world, hundreds of thousands of people with psychosocial disabilities like Sodikin have been shackled—chained or locked in confined spaces—at least once in their lives.

Within this small radius of his life, lit by a solitary lightbulb, Sodikin slept, went to the bathroom, and ate food that his mother would pass to him on a plate through a window no larger than the palm of his hand. Sodikin’s story was featured in our 2016 report which documented shackling across Indonesia. In partnership with the Indonesian Mental Health Association and others, we called for community-based services.

Within a year, the Indonesian government rolled out a community outreach program in which community workers went door to door to collect data, raise awareness, and provide services, including basic mental health support. As of September 2020, the program had reached 48 million – roughly 70 percent – of Indonesian households effectively turning the tide on shackling.

As for Sodikin, he was able to access mental health services and rebuild his life. He started to work in a clothing factory stitching school uniforms—becoming the breadwinner of his family—and even did the call to prayer at his local mosque, a prestigious community role. And the shed in which he was confined for eight years? His family torched it and grew a garden in its place. Since the start of the Covid-19 pandemic, Sodikin lives in an NGO-run rehabilitation center outside his village where he enjoys farming and helps support people with mental health conditions, many of whom have been rescued from chains.

When Julija was born in Belgrade, Serbia’s capital, in 2012, the medical staff took her away from her proud mother, Jasmina. As Jasmina explained to Human Rights Watch, “The nurses started consoling me by saying: ‘You will have another child’… Julija was written off immediately.”

Over the next few days, despite repeated inquiries, Julija’s parents Jasmina and Ivica were not given any information about their daughter’s health and well-being. Then a doctor told them Julija had a rare genetic condition called Apert Syndrome – which results in vision and hearing loss, difficulty breathing and eating, cognitive difficulties, and webbed fingers and toes.

Jasmina and Ivica travelled across Serbia for specialist appointments and surgeries to get Julija the best treatment possible. However, with no community support and services available, they made the difficult decision to follow the advice repeatedly given by health care professionals and place their three-month-old in an institution for children with disabilities. They believed they were doing what was best for their child but during the 10 months Julija spent there, her parents began noticing the deterioration of her well-being and development. Jasmina and Ivica then decided to bring her back home for good. They described how she was a “different child” in the loving care of her family. Today, Julia plays piano and loves to dance.

Across Serbia, hundreds of children who were born with disabilities are still separated from their families and placed in large residential institutions, often far away from their homes. Since the release of our report and persistent pressure by local organizations and media, the Serbian government has made commitments to protect the rights of children with disabilities – such as ensuring access to inclusive education – but more should be done to end the routine placement of children with disabilities in state institutions. All governments should instead provide support so children with disabilities can live with their families, like Julija.

When Nujeen was 16, she began a grueling 16-month 5,600-kilometer journey from her native Syria to Germany in a steel wheelchair. She was born with cerebral palsy, unable to walk without assistance. In her home city of Aleppo, Nujeen never attended school. She taught herself English by watching American soap operas.

Throughout her trek, Nujeen faced challenges such as feeling pressured to leave her wheelchair behind and having to crawl into the toilets in refugee camps because they were not accessible to people with disabilities. She often felt she was a burden and would be the reason that her family didn’t reach safety. Nujeen has since become a powerful advocate for the rights of refugees and people with disabilities, sharing the harrowing story of her journey to move hearts and change policies.

In a unique partnership with Human Rights Watch, the European Disability Forum and the Norwegian Refugee Council, Nujeen urged senior policymakers in the European Union to re-evaluate their policies regarding people with disabilities in humanitarian crises. In 2017, the EU commissioner for humanitarian assistance subsequently took important steps to ensure that the delivery of humanitarian aid meets the needs of people with disabilities.

In 2019, the same year Human Rights Watch awarded her the Alison Des Forges Award for Extraordinary Activism, Nujeen became the first person with a disability to formally brief the United Nations Security Council. Nujeen delivered her message with poise and conviction: “This should not be just another meeting where we make grand statements and then move on… you can and should do more to ensure that people with disabilities are included in all aspects of your work – we cannot wait any longer.” Two months after her historic speech, the UN Security Council adopted its first ever resolution on people with disabilities in armed conflict.

Children with disabilities in Syria, however, continue to be among the most at risk of violence and abuse, and the UN and governments need to commit serious attention and resources to ensure their protection.

We first met Hauwa in 2018 when Human Rights Watch conducted research on the shackling of people with psychosocial disabilities in Nigeria. Two years earlier, Hauwa founded She Writes Woman, a Nigerian mental health initiative, to offer services to women like her who were survivors of sexual violence and had experienced a mental health crisis. She is one of the few women in West Africa to publicly speak out about her mental health condition.

Hauwa was the inaugural recipient of the Marca Bristo Fellowship, an award created by Human Rights Watch in memory of the pioneering disability rights icon. On receiving the award, Hauwa said: “Women with mental health conditions like myself have something to say and we are being heard. It’s empowering!”

In 2020, together with Human Rights Watch, Hauwa testified before the Nigerian National Assembly, Nigeria’s federal legislative authority, on a proposed mental health legislation. She was the first person in the country with a mental health condition to publicly urge lawmakers to ensure inclusion of people with psychosocial disabilities in creating human-rights-respecting mental health legislation. Hauwa also called on the Nigerian authorities to ban the inhumane practice of shackling.

That same year, Human Rights Watch published a ground-breaking report exposing the global scale of shackling across 60 countries. We also launched the #BreakTheChains campaign and, led by advocates like Hauwa and local organizations, continue to influence policy and practice to end the practice worldwide. In January 2023, President Buhari signed the new bill, which explicitly outlaws shackling in Nigeria.

In recent years, Covid-19 responses have exposed the harms of institutionalized care for older people, the inadequacy of social protection systems, and the entrenched discrimination against older people simply because of their age. In 2021, we documented the social isolation and neglect of older people in US nursing homes during the pandemic. This work built on a 2018 report on how nursing homes across the United States routinely give antipsychotic drugs to residents with dementia to control their behavior, despite laws against the misuse of drugs as “chemical restraints”. This abusive practice remains widespread, even though the use of antipsychotic drugs on older people with dementia is associated with a nearly doubled risk of death.

During the course of our research, we met Lois, a then 75-year-old woman with dementia, who was known for being the “life of the party” in her family. When she went into a nursing home, she was put on antipsychotic drugs without her informed consent. Her daughter reported that when they visited her, she wouldn’t talk, laugh, or cry; she would “just sit and stare, like she wasn’t even there”. When Lois moved to a different facility, she was able to stop taking antipsychotic drugs and start laughing and smiling again.

Following on from our reporting and thanks to mounting pressure from partner organizations in the US, including AARP, California Advocates for Nursing Home Reform (CANHR), and the National Consumer Voice for Quality Long-Term Care, as well as older persons’ rights advocates, in 2021, US regulators reversed a damaging rule that reduced fines for nursing homes found in violation of federal laws and regulations.

Mary, a prisoner with a psychosocial disability, was put in solitary confinement within the health center of a prison in Australia for 28 days, without access to support or meaningful mental health services. Her cell had no power or running water. Correctional officers mocked Mary, whistling at her like a dog and telling her to crawl on her hands and knees. Mary described the conditions as “putrid.”

About 50 percent of Australia’s prison population has a disability. People with disabilities are not more criminal than anyone else, but the lack of comprehensive community mental health and social services has created a pathway to prison for many people with disabilities. Many are Aboriginal and Torres Strait Islander.

Across the 14 prisons we visited, people with disabilities like Mary were locked up in solitary confinement for days, weeks, months, and sometimes even years. Solitary confinement is damaging for any prisoner, but for prisoners with disabilities it has a compounding impact.

Together with our partners from the disability, Indigenous and prisoners’ rights sectors, we have been pushing for an end to solitary confinement and for quality support services for prisoners with disabilities. As a result, in 2018-19, the Queensland government allocated an additional AUD $2.9 million in annual funding to improve support and mental health services for prisoners with disabilities. It also developed new tools to screen prisoners for cognitive disabilities upon entry into prison. In 2020, the New South Wales and Western Australian Inspectors of Custodial Services’ revised monitoring guidelines to meaningfully include people with disabilities and prohibit prolonged solitary confinement.

In 2022, Human Rights Watch was invited to provide expert testimony to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. The Chair of the Royal Commission cited our 2018 and 2020 reports in his opening address to “illustrate the fundamental nature of the problems.”

When she was 13, Razia (not her real name), who has an intellectual disability and difficulties in speaking, was raped by her brother’s tutor in a village in northern India.

With the support of the Latika Roy Foundation, an organization working with children and adults with disabilities, Razia and her family pursued justice via the courts – and won. Her attacker was sent to jail and the court ordered Razia to be paid 200,000 rupees (US$3,100). For more than two years, Razia and her family were still waiting for the compensation.

We highlighted Razia’s story in our 2018 report and video on the many barriers women and girls with disabilities experience in accessing justice in India. Staff at the Latika Roy Foundation brought up Razia’s case with authorities again and the money was finally paid out. Razia’s case was the catalyst for 22 other survivors of sexual violence in her state to receive compensation, some of which had been held up for no reason.

In 2021, based on a case involving a 19-year-old blind woman who was raped by her brother’s friend, India’s Supreme Court acknowledged the threat of sexual violence for women and girls with disabilities as “an all-too-familiar fixture of their lives.” The judgment also noted that the rape survivor identified the perpetrator by his voice, which was familiar to her, and stressed that such testimony should be given equal legal weight as a visual identification.

The judgment, which extensively cites Human Rights Watch’s 2018 report, echoes calls from the Indian disability rights movement for concrete reforms to make the criminal justice system more accessible for people with disabilities. It was a watershed moment for women with disabilities in India and worldwide that they will no longer be invisible victims of violence.

Josina, a girl from Mozambique, has albinism, a rare condition in which the body produces lower levels of melanin, giving her a fairer complexion as well as low vision. Almost all people with albinism we spoke to for our 2019 report experienced widespread stigma, discrimination and rejection at school, in the community, and sometimes from their own families. They faced significant obstacles to a quality education, including bullying by their peers and sometimes teachers, and little to no accommodations in the classroom for their low vision.

When we first met Josina, she struggled in school, even though – unlike most other children with albinism we interviewed – her teacher and family were very supportive. But something as simple as eyeglasses, which most people in Tete cannot afford to buy, truly opened her world. They made her feel like any other kid. “At school, the glasses help me study,” Josina told us. “Now I can read with less difficulty, and I can copy better from the blackboard or book without missing words.”

The eyeglasses were possible because of Azemap, a volunteer-run group that provides basic necessities, such as sunscreen, scent-free soap, and sun-protective clothing, to people with albinism in Mozambique. In collaboration with Human Rights Watch, Azemap also painted five murals at schools across Tete, to help break the stigma. The murals depict two girls, one with albinism: Josina (along with her niece). Below the murals, it reads: “People with albinism are the same as you!”

Guadalupe, known as Lupita, was beaten severely by her sisters-in-law, with her husband’s acquiescence, injuring her spine and resulting in a physical disability that only allowed her to move her arms and neck slightly. She courageously shared her personal experiences of discrimination, abuse and exclusion at the launch of our 2020 report on violence against people with disabilities in Mexico.
 

Following her six-month recovery in the hospital, Lupita requested emergency protection measures, a legal recourse granted by Mexico’s General Act to Ensure Women a Life Free of Violence (2007), so she could live away from her husband. To widespread dismay, the judge denied the request for formal procedural reasons.

People with disabilities in Mexico have limited to no support to live in the community, such as personal assistants or accessible and affordable housing. Practically, this meant Lupita stayed in bed all day because there was no one available to help her into her wheelchair. Soon Lupita’s resources were drained, and she was forced to stay in the house of her husband and sisters-in-law. She died from complications of unremoved kidney stones on February 12, 2023. She was only 58 years old.  

Lupita helped raise awareness about the Mexican government’s failures in preventing violence against women, including by giving numerous interviews to newspapers. Her story helped push Mexico’s national statistics office (INEGI) to begin gathering data on this previously invisible topic. The government found that violence against women with disabilities is even higher than for those without.

In May 2023, the Mexican government adopted reforms to the freedom from violence act, specifically on accessibility in shelters, procedural accommodations, and new rules for protection measures, helping ensure that Lupita’s experience is not repeated for more women with disabilities in Mexico.  

Abdelrahman, who has a hearing disability and is a father of two boys, fled Egypt to Canada to seek protection in 2017. The Canada Border Services Agency (CBSA) arrested him without charge at the airport and confiscated his belongings, including his re-chargeable hearing aid battery, and placed him in immigration detention. Abdelrahman spent approximately two months in three different provincial jails and several weeks in solitary confinement. Because he didn’t have batteries for his hearing aid, Abdelrahman spent most of his time in immigration detention in complete silence: “At the jail, I couldn’t hear anything.… I tried to save the battery as much as possible.… When I finally got a [new] battery, I felt so happy, I couldn’t believe it. I felt like my life was back again.”

Read a text description of this video

My life changed the day I arrived at Vancouver International Airport in 2017. 

I fled from Egypt to Canada to seek protection. 

I was arrested without charge, my belongings were taken, including the batteries for my hearing aids. 

My whole life I have relied on hearing aids, but suddenly I was in prison, confused, scared, and unable to hear anything. 

Nobody told how long I would be detained. 

I was finally released. 

My wife and two boys are still in Egypt. 

I haven’t seen them in four years. 

I live every day thinking about them. 

Human Rights Watch and Amnesty International worked together to document human rights violations in immigration detention in Canada, with a particular focus on people with psychosocial disabilities. In detention, people are regularly handcuffed, shackled, held with little to no contact with the outside world, and without knowing when they will be released. This has a devastating impact on their mental health. People with psychosocial disabilities face discrimination throughout the detention process.

In 2021, we joined Amnesty International and advocates across Canada to launch the #WelcomeToCanada campaign to stop the use of provincial jails to lock up people in immigration detention – people who travel to Canada seeking safety or a better life. Abdelrahman’s story has helped compel eight of Canada’s 10 provinces to terminate their immigration detention contract with the federal government, a vital step to ensure Canada better protects the rights of migrants and asylum seekers, particularly those with disabilities.

While climate-related disasters affect everyone, people with disabilities and older people are at greater risk of experiencing adverse impacts of climate change and other extreme weather events due to social and economic factors, including higher levels of poverty, discrimination, stigma, ableism, and ageism.

According to the authorities in British Columbia, Canada, nearly 600 people died due to extreme heat during the summer of 2021, and 91 percent of those who died had a chronic medical condition or a disability and 90 percent were older people.

Gabrielle, a disabled policy analyst who lives in poverty in a subsidized apartment in Vancouver, British Columbia, shared this perspective during our 2021 research on the impact of the heat dome on people with disabilities: “I saw what happened during the heatwave, I read about people calling for help, and your relative dies in front of you because the ambulance doesn’t arrive. Can you imagine being that person?... I am disappointed that the government did not come out to say, ‘We are never letting this happen again, we are not going to be satisfied until we prevent any preventable deaths, we have learned from this, we are never going to allow this to happen again.’”

While climate-related disasters affect everyone, people with disabilities and older people are at greater risk of experiencing adverse impacts of climate change and other extreme weather events due to social and economic factors, including higher levels of poverty, discrimination, stigma, ableism, and ageism.

According to the authorities in British Columbia where Gabrielle lives, nearly 600 people died due to extreme heat during the summer of 2021, and 91 percent of those who died had a chronic medical condition or a disability and 90 percent were older people.

Our report recommendations on disability-inclusive responses to climate change influenced Canada’s National Adaptation Plan. We also successfully advocated for the British Columbian government to consult with people with disabilities and older people as they developed their provincial Heat Response Framework. Our research and several testimonies of our partners were featured in the provincial government’s report and during an event at the 2021 UN Climate Change Conference.

This feature is dedicated to our dear friend and Advisory Committee member, Judy Heumann (1947-2023), whose pioneering and lifelong activism supported the rights of people with disabilities in the United States and around the world. Judy galvanized people with disabilities to “demand what you believe in”, empowering them to be agents of change, transforming communities and attitudes.

We would like to thank all of the people with disabilities and older people and their families who have shared their experiences with courage and dignity over the past decade. We would also like to thank our Board members and many supporters and partners over the years who have enabled us to mainstream attention to the rights of people with disabilities across the organization and accompany organizations led by people with disabilities in their journey for equal rights. We look forward to continuing Judy’s legacy.

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