A dozen children with cerebral palsy lie on thin mattresses on the floor of a spacious room. A smell of cleaning products unsuccessfully masks the scent of urine.
Nearby, five children are tied to a rough metal frame. They are bandaged from the waist to the ankles, their hands bandaged too, looking half mummified in an attempt to teach them how to stand.
There are 19 patients in total at Asociación Hogar Infantil San Luis Gonzaga, an institution located in Mexico City. They are aged between nine and 40, but the eldest look like teenagers – their bodies haven’t fully grown and they seem absent from their surroundings. Most still wear diapers. All were brought here by their families, but just half of them have sporadic contact with their relatives. As long as the monthly fees are paid (from £29 to £185, depending on the family’s financial situation) the child is allowed to remain there.
Here, time seems to have halted: teaching materials, orthopaedic contraptions, and physiotherapy techniques go back 30 years. Even the patient care model, which focuses solely on physical therapy, denies the residents any basic entertainment or volition, and essential personal support.
Video footage taken inside the institution in May this year by NGO Disability Rights International (DRI) shows 10-year-old Leonardo, who is autistic, fastened in a wheelchair. His wheelchair is tied to the neighbouring crib so that he is unable to move – even though he is capable of walking. This set up is not to punish him, says a staff member, but to keep him safe and stop him from throwing himself off the chair. His family live six hours from Mexico City, and are not financially able to take care of him.
Another video shows a boy who appears to be in his early teens with cerebral palsy lying in his bunk, banging his teeth on the wooden sides. The side boards are heavily marked by the force of his head and teeth against the wood. When the child opens his mouth, there are teeth missing.
Up to eight million children (pdf) live in orphanages across the world, despite more than 90% having at least one living parent. Disabled children are overwhelmingly represented, and can remain in institutionalised care for life. Harrowingly, young adults raised in institutions are 500 times more likely kill themselves.
For the last 13 years DRI has been working on a worldwide campaign to shut down orphanages and institutions that, in far too many cases, neglect or even abuse the rights of the children. In particular, they focus on people with disabilities. Over their years of research, DRI has documented abuse within state-run, and donor-funded facilities – including orphanages and psychiatric wards – from the Ukraine to Guatemala. In the process they have exposed institutionalisation as a worldwide human rights issue.
Last year, when investigating Mexican institutions for children with disabilities, DRI found “atrocious abuses that fall inside the definition of torture”. Investigators recorded prolonged use of restraints in centres – like those in San Luis Gonzaga – that caused high levels of suffering, physical deformities and dislocations. Any restraint of people with mental disabilities “even for a short period of time, may constitute torture and ill-treatment”, according to the UN’s rapporteur on torture.
In Paraguay, researchers found autistic children locked in cages at a state-run hospital. The children were only allowed to spend a few hours every other day in an outdoor “pen littered with excrement, garbage and broken glass”, as DRI described it. There have been reports of forced sterilisation of patients in Mexico – some pressured by health professionals – to cover up sexual abuse within an institution. In Ukraine, the teams discovered that children were given classifications depending upon the “severity” of their disability. Children classed as level three or four were considered to be “uneducable”, and were expected to remain in an institution for life.
Though the organisation has come across well-equipped, clean facilities and many families believe they’re doing the right thing for their children, DRI’s president Laurie Ahern maintains “there is no such thing as a good orphanage. Nothing replaces a family. Children still have psychological and developmental delays – you need someone to look into your eyes, a primary caregiver, and that doesn’t happen in an orphanage.”
“Even in the best of institutions children don’t get their full needs met,” says Helen Dent, professor of clinical and forensic psychology at Staffordshire University. Dent watched DRI’s videos from the institution in Mexico, and her impression is of a “clean and modern” facility where “the staff are trying to care for the children with apparently few resources”.
She adds: “The young man banging his teeth against the cot side was clearly in need of adult attention both to stop him from self-harming and to provide positive stimulation to remove the need for self-harm. Most people kept in such circumstances would suffer serious consequences and show unusual behaviours.”
The alternative, argues DRI, should be that development funding is moved to community- and family-based care. Their campaign is a monumental task that requires changing mindsets on a global scale.
“They were literally hosed off to be cleaned”
It was after visiting the Samuel Ramirez psychiatric hospital in Mexico City more than 20 years ago that Eric Rosenthal decided to found DRI.
With a slight tremble in his voice he recalls an area surrounded by barbed wire where both children and adults were held naked. “They were literally hosed off to be cleaned. They were fed on trays … they all lunged for common food and had to fight over it,” he says. “They were tied down. It was the most horrendous dehumanisation. These people look like animals when they’re left this way, and that’s how they were treated.”
Rosenthal, 52, studied both mental health and international human rights before turning to law. A lifelong activist, he strongly felt the rights of people with disabilities had been overlooked by the international development and human rights communities. DRI was established with a $20,000 fellowship in an empty office above a dance studio in Washington DC.
The organisation bases its model on Amnesty International, researching and exposing injustices to push for change. Over the past two decades, Rosenthal has visited hundreds of institutions in more than 30 countries, accompanied by a team of volunteers who are often medical experts.
The team is small, but they’ve made some genuine advances over the years. DRI now has offices in Mexico, Guatemala, Ukraine and Serbia, and have produced 18 major investigative reports. An expose of abuse in one particular facility that DRI collaborated on with the New York Times Magazine, contributed to the historic 2006 UN treaty on people with disabilities, which called for disabled people to have the same human rights as the able bodied.
The organisation’s work has also led to the European Union introducing a policy where European money cannot be used for maintaining any kind of institution. And in Serbia, DRI’s efforts have led to a law that children under the age of three can’t be institutionalised. Serbia now has one of the lowest percentages of children in institutions – though the number of institutionalised children with disabilities remains high.
After the landmark UN treaty – the DRI focused its efforts on stopping new entrants to existing facilities. “It’s a lot easier to establish international law than enforce that law,” Rosenthal says. “If we could get countries to agree on a moratorium of no new admissions to institutions, then they would whittle [the numbers] away – it would save families, save kids at the most vulnerable point in their lives. And that was Laurie’s idea.”
Laurie Ahern, 62, is the brainchild of DRI’s global campaign to end institutionalisation. Rosenthal sings her praises, and when speaking to her on the phone from her office in DC, it’s not hard to see why. Her passion for the cause is admirable. She cares deeply for her colleagues and seems to dedicate every waking hour to this campaign.
“It’s something that we can change,” she adds. “This is really not a complicated problem; this is about donors putting money to families and not supporting orphanages.” Other organisations such as Lumos, the charity founded by JK Rowling, also campaign for deinstitutionalisation, and Lumos has just launched a global campaign to raise awareness of the issue. DRI, Lumos and other organisations including the Replace Campaign all support the idea that we should change this culture of institutionalisation and work on keeping families together, supporting communities, and improving social networks. Lumos believes that the institutionalisation of children can be eradicated globally by 2050 (backing this statement with figures including the 70% reduction of the number of children in institutions in Moldova over the last decade, despite the country’s high poverty rates).
There is also an economic argument, Ahern adds: “It’s so much less expensive for government to support families to [help] children with disabilities go to school, than it is to pay to keep them in an orphanage for a long time.” For example, in Tanzania’s Kagera region, the yearly cost for one child in institutional care is reportedly $1,000 (£770) – six times the cost of supporting a child in foster care. And in Romania, residential care for children costs up to $280 (£216), while family reintegration and local adoption costs about $19 (£15) per child.
But in many senses they’re fighting an uphill battle. Institutionalisation is still a development model – and in some countries it even constitutes a method of tourism, or voluntourism – supported by donors and governments.
Money is a big problem. There is little or no funding for the services that can prevent family separation or for social care networks. Any funding that does come through is often used to renovate or reopen institutions, especially facilities for people with disabilities, rather than support the structures that can help replace them.
Although 32 state-run institutions in Georgia were shut and replaced with family and community-based services in the last decade, a 2013 DRI investigation found that US government money had funded two institutions specifically for disabled people, in the years since. Between 2008-2012, €5.6m (£4.8m) of EU funding (pdf) was spent on renovating children’s institutions and those for people with disabilities in just one county in the Czech Republic. Despite this investment, the quality of care did not improve and the Czech ombudsman still reported concerns over serious neglect and abuse in these facilities.
‘When no one is watching out, bad things happen to children’
But for Ahern and her colleagues there is no question of giving up. I speak to her just before she is about to go on holiday for three weeks – her only time off throughout the year. Can she ever switch off? “Yes I can. It’s for my own survival and because I want to be able to stay and continue to do this work.” She is going to spend time with her granddaughter, who is a poignant reminder of why she works with DRI. “I can’t imagine her going through what I’ve seen other children go through unnecessarily. In recent years the investigations have become even more nefarious than I thought they ever could be – the trafficking of children for sex, pornography, organs. There’s no way I …” she falters. “I can’t put that into the back of my mind and just let it go.”
When I ask Ahern about her motivation for the work, she says: “I was abused as a child. I wish someone had come and rescued me; I wish somebody had spoken to me when I couldn’t speak.” Ahern believes that children left in institutions, especially those with disabilities, are forgotten. “When no one’s watching out for children – whether that’s conflict or an orphanage – bad things happen to children. There’s a sphere for abuse and neglect.”
One of the most extreme cases of neglect she has seen was in the Tbilisi Infants Home in Georgia, where children with hydrocephalus – a buildup of fluid in the brain – were left untreated, which is extremely painful and life-threatening. “Babies, six months old with huge heads were just laying there moaning. I was overwhelmed with grief because we know the problem can be taken care of and the child can have a perfectly normal life,” she says. The NGO found more than 50% of the children with this treatable condition died in the institution.
“You can’t see this and not be moved,” Ahern says. She tells me about the time when, a few years ago, she walked into a Serbian institution to find teenagers with cerebral palsy who looked like children because they had not been allowed to leave their beds in 10 years. Worse, this was not the first time she had come across this situation.
“But you can take action, get a little angry, and then you see change. You see people’s minds change, and we see money change [from funding orphanages] because of that. That’s the only way for me to deal with [this].”