We may just about grasp the challenges faced by a very poor Romanian family with five children, including a daughter in a wheelchair, when they learned their new-born twin boys had been diagnosed with cerebral palsy.
But can we, in our developed world of medical and social care, begin to imagine their anguish when doctors advised them that the only way they could ensure the twins would be cared for and properly educated was to give them up to an institution for children designated “irecuperabil”(impossible to recuperate)? Institutions of this kind mushroomed in Ceausescu’s Romania where, ideologically, children considered less-than-perfect were systematically segregated from society and warehoused in horrifying conditions with high mortality rates.
Radu and Marius’ parents did as the doctors said when the boys were aged one, and did not see them again for 17 years. In 2001, I led the team that had been asked by the government to close the institution. We visited Radu and Marius’ parents to see if a move home might be possible. But the family had its current troubles and did not want to look back. So the young men moved to a family-style “small group home” in the community.
The staff in the home saw the boys’ potential immediately and within months they had begun to read and write. When they turned 18, and celebrated their birthday for the first time, I asked Radu if he was happy. He said, “I am and here we have everything we need. And I hope you don’t think I am ungrateful, but what we really want is to see our mum and dad. Could you help me write to them?” With support, Radu wrote, simply: “Dear Mummy and Daddy, we love you and we miss you very much”, then posted his first ever letter. Within days, their parents came to visit for an emotional reunion, which led to the boys returning to live with them.
Access to basic literacy for the first time in life, and the ability to write those heartfelt words, enabled this young man to rebuild his family.
Their story stays with me not just because it shows us the transformative power of literacy, but also because it tells us so much about the desperate sacrifice so many parents of children with disabilities around the world feel compelled to make, based on the false promise of education.
International conventions enshrine the rights of a child to education as part of family life, but children are deprived of those rights in many parts of the world, including the estimated eight million in institutions and so-called orphanages – so-called because 80% have at least one living parent but are separated from families through poverty, disability, discrimination and war, disease and disaster.
Orphanages and institutions promise education but the trauma of separation from the family often results in poor educational outcomes. In fact, institutionalisation is often part of the process by which children with intellectual disabilities are side-lined and kept out of education. Being dismissed as “uneducable” has led to a significant proportion of children who end up institutionalised for life.
Even if they do leave institutions and orphanages, institutional care proves a desperately poor grounding in life. Research tells us that the IQs of children who grow up in impersonal institutional care – whatever the intentions of paid or volunteer staff, or the money spent on the institution – are on average 20 points or more below those of children raised in families. The damage is most severe for children raised in institutions as babies. The warmth, love and mental stimulation of a family shape personality and provide fertile ground for the seeds of schooling. Institutions and orphanages can never replace families and can never, therefore, provide truly worthwhile education.
Radu did not learn to write until he was 17, but the lack of education can be even more devastating. Children raised in institutional care are also woefully ill-prepared for adulthood – without understanding, for instance, how to buy a bus ticket, they are vulnerable to the predators in society.
In the UK and other developed countries, we accept as natural that children with intellectual and learning disabilities will attend inclusive mainstream schools, with support. We understand that much can be done for children with cerebral palsy and they are far from uneducable.
But that was not always the case in the UK and it is certainly not common in many other parts of the world today. In Moldova, for instance, a former Soviet state and Europe’s poorest country by far, there was until recently not even a conception of inclusive education. Since 2007, though, Lumos has helped the government close grim “residential special schools” – which separated children with intellectual disabilities from families, often over long distances which broke family bonds – and return thousands to their families and local inclusive schools offering special educational support. This has doubled the number of children with disabilities being included in formal education and the results are already starting to show dramatic improvements in literacy.
Lack of access to community-based health, education and social services is starkly obvious in Haiti, where we are now helping the government to reform a system in which more than 30,000 children – at least 80% not orphans – living in 760 orphanages.
As we have seen elsewhere, orphanages proliferate – in Haiti as a result of the flow of aid after the 2010 earthquake – but they do not generally attract real orphans. They pull in the children of very poor families on the promise of medical care and, yes, the false promise of education.
The Romanian twins may have been harmed by the legacy of being raised in an institution but they are now embraced by their family and, wonderfully, they have jobs and are fully part of their community. But no child should have to wait so long for an education and no family should have to pay such a price
This story is part of the New Statesman’s Literacy Week.
Georgette Mulheir is CEO of the international children’s organisation Lumos, dedicated to helping the estimated eight million children in institutions and orphanages worldwide return to family life. J K Rowling, often credited with getting a generation of children reading, founded the organisation ten years ago. Names in this story have been changed.