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Giving disabled children a voice in decisions affecting their lives is important - and inspirational

Lumos voices

Giving disabled children a voice in decisions affecting their lives is important - and inspirational

FOR more than 20 years, in 23 countries, I have helped to move disadvantaged and disabled children out of institutions and so-called orphanages, where their development can be irreparably harmed, and into families, in their communities. Ending institutionalisation is a long-term goal, but we at J.K Rowling’s charity Lumos believe it is achievable. Many countries worldwide now have ‘deinstitutionalisation’ plans and the tide is slowly, but surely, turning against the use of institutional care.

There is a crucial element missing, however, from many of those plans: they have no mechanisms for listening to, and learning from, the children themselves.

There is a great deal of well-meaning, and welcome, adult activity in the deinstitutionalisation field but meaningful child participation in the decisions affecting their lives is an alien concept in many countries. When it is attempted, it can be manipulative or tokenistic.

I have seen politicians shamelessly feeding self-serving words for children to repeat parrot-fashion on platforms at conferences. I have sat through children from institutions doing traditional dances before audiences of influential people. I have heard beautiful speeches from lovely, well-educated children without disabilities extolling the virtues of work to give a better life to their peers.

Children with intellectual disabilities in institutions are rarely supported to tell those with power over their lives what time they would like to eat, or go to bed; whether they would rather sleep alone, or with other children; what clothes they would like to wear: or, indeed, simply to say they do not like having to share a toothbrush.

What surprises me is that true child participation – encouraging disadvantaged and disabled children to become ‘self-advocates’ – is not fundamentally difficult. It is nowhere near as complex as helping a national government exchequer to shift funds from a system of care based on institutions to one based on services to keep families together in the community – and that is something Lumos has done successfully in a number of countries.

Children with intellectual disabilities – or learning disabilities as we say in the UK – may need support to find ways to communicate what they have to say. But they do have a great deal to say. They have opinions and ambitions. They, not the well-meaning adults, are the true experts on the services and support they need to live fulfilled lives.

But true child participation requires a change of culture and mind set on the part of the adult ‘experts’, starting with a willingness to hear – and really listen to – children who have been marginalised and have had no voice.

At Lumos, where child participation is a vital element of our approach to end institutionalisation, we have seen the impact that meaningful child participation can have.

Some years ago I heard the then Chairman of the Bulgarian State Agency for Child Protection, talking to children and young people with intellectual disabilities at an international conference in Sofia. “How much better it would be,” he said, “if we, politicians, spoke less and you, children and young people, spoke more.” He added: “Listening to you, I have to admit I was very moved, because the issue of children and young people with intellectual disabilities is not well understood. I was reminded how much more meaningful and powerful it is when you, the people directly affected, speak about this issue.” We have seen eyes being opened, and prejudices and misconceptions swept away, through contact with child self-advocates.

There are many in the UK who will argue that we are not as good as we should be at listening to adults with disabilities. I wholeheartedly agree.

But I am focusing on children, as we work to help transform the lives of up to eight million of them who are living in harmful institutions and so-called orphanages (so-called because the vast majority are NOT orphans, but are separated from their families through poverty and discrimination). The evidence is clear that children raised in institutions do not get the same love and close adult attention as children in families. They often experience abuse, neglect, lack of stimulation, and extreme stress, all of which can have a profoundly negative effect on their development and prospects in adult life.

Every time I meet the young people involved in our child participation work, I am struck by the power of their words. They tell us: ‘Every child needs a kiss goodnight’; ‘You can ask our parents or teachers, but we know best what we need’; ‘Children with disabilities and children without disabilities should be in school together, we are good for each other’; and ‘You need to find a way to hear our voices’.

That is why, on Thursday Feb 26 2015, at a conference in the UN building in Vienna, we celebrated the work of talented children and young people, most with intellectual disabilities, who shared their innovative ideas, as ‘self-advocates’, for influencing politicians and policy makers, before an audience of hundreds of disability rights professionals and activists at the annual Zero Conference