Eric Rosenthal, JD, is founder and Executive Director of Disability Rights International (DRI). Laurie Ahern is its President. Through investigations of orphanages and other institutions in more than two dozen countries, DRI has brought international attention to the human rights of people with disabilities.
Perspective: Segregation and abuse in institutions
By Eric Rosenthal and Laurie Ahern
Throughout the world, millions of children with disabilities are separated from their families and placed in orphanages, boarding schools, psychiatric facilities and social care homes. Children who survive institutions face the prospect of lifetime segregation from society in facilities for adults. According to the Convention on the Rights of Persons with Disabilities (CRPD), segregating children on the basis of their disability violates the rights of every such child. Article 19 of the Convention requires governments to establish the laws, social policies and community support services needed to prevent isolation or segregation from the community.
Over the course of 20 years, Disability Rights International (DRI) has documented the conditions of children with disabilities in institutions in 26 countries around the world. Our findings are surprisingly consistent. We have interviewed heartbroken mothers and fathers who wish to keep their children at home but receive inadequate support from governments and cannot afford to stay home from work to take care of a child. Doctors often tell parents to place their daughter or son in an orphanage before they become too attached to the child.
Raising children in congregate settings is inherently dangerous. Even in clean, well-managed and well-staffed institutions, children encounter greater risks to their life and health compared to those who grow up in families. Children who grow up in institutions are likely to acquire developmental disabilities, and the youngest among them also face potentially irreversible psychological damage.
Even in institutions with adequate food, we often observe children who are emaciated because they simply stop eating – a condition called ‘failure to thrive’. Infants and children with disabilities may starve or lack adequate nutrients because staff do not or cannot take the extra time to feed them. Sometimes staff will prop a bottle on the chest of a bedridden child, in theory allowing her to grasp it and drink – but in practice, the child may be unable to pick it up.
Many children are left to languish. A DRI investigator came to the horrific realization, in 2007, that a child who looked to be 7 or 8 years old was, according to a nurse, 21 years old and had never been out of his crib in 11 years.
Without any movement, physical disabilities worsen, and children can develop life-threatening medical complications. Some children’s arms and legs atrophy and have to be amputated.
Without emotional attention and support, many children become self-abusive, rocking back and forth, banging their heads against walls, biting themselves or poking their own eyes. Most facilities lack trained staff who can help children stop such behaviour. Instead, children are sometimes tied permanently to beds or held in cages – whether to prevent self-abuse or to help overwhelmed staff cope with the demands of the many children in their care. The United Nations Committee against Torture and the United Nations Special Rapporteur on Torture have said that the prolonged use of restraints may constitute torture.
For a child who has already been institutionalized, falling ill can be a death sentence. Staff members at facilities in more than one country have said that children with disabilities are routinely denied medical treatment. Institution staff have also told us – incorrectly – that children with developmental disabilities lack the ability to feel pain. So, in some cases, medical procedures are conducted without anaesthesia. In one facility, children’s teeth were extracted with pliers; elsewhere, children received electro-convulsive therapy with no anaesthesia or muscle relaxants.
Children have been given electric shocks, physically restrained for long periods and isolated with the express purpose of causing pain, on the theory that this ‘aversive therapy’ would extinguish behaviour deemed inappropriate. A teacher in the United States described one girl – blind, deaf and non-verbal – who was shocked for moaning. It turned out she had a broken tooth.
Without oversight and human rights protections, children have, in effect, disappeared in institutions. Human rights monitoring and enforcement programmes to protect against violence, exploitation and abuse – as required by Article 16 of CRPD – are absent in most of the facilities we have visited. In some cases, authorities do not keep track of the names or numbers of children detained in these places.
Official statistics are unreliable and often understate reliance upon segregated service systems. The numbers are often limited to orphanages and do not include children detained in other types of institutions, such as boarding schools, health-care or psychiatric facilities, criminal justice systems or homeless shelters. Private or religious institutions, which may be much larger than government orphanages, are often not counted.
The entrances to some orphanages and other institutions are emblazoned with the logos of governments, corporate donors, churches or private charities. Even when financial assistance from international donors or technical assistance agencies makes up a small portion of an institution’s operating budget, this support can provide an apparent ‘seal of approval’. DRI has found bilateral and multilateral support – both official and from voluntary donations by staff – for such amenities as playgrounds at orphanages where children die for want of medical care and where they are tied to beds. These donors may be well intentioned but this support runs counter to the intent of the CRPD and other rights instruments that protect people from segregation.
No child should ever be taken away from her or his family on the basis of disability. DRI is calling on every government and international donor agency to commit to preventing any new placements in orphanages. It is much harder to protect children and provide them with an opportunity for a life in society when their ties to family have already been broken. The detention of children in institutions is a fundamental human rights violation. We can bring it to an end, on a worldwide scale, through a moratorium on new placements.