Debbie Jolly, one of the founders of Disabled People Against Cuts and ENIL Board member discusses the responsibility disabled people’s organisations have in standing up for those whose voice has been taken away. Jolly argues that claims to protect the client’s ‘confidentiality’, allegedly acting ‘in their best interests’, are just a way of silencing opponents of institutionalisation and other forms of involuntary treatment and confinement.
Whose voice is speaking in our name?
Disabled peoples’ voice has been silenced and denied throughout history. The independent living movement has worked hard to change this and many gains have been made. Yet, the silencing and denial of disabled people’s voices is an injustice that continues today. This is particularly so for those who become institutionalised across Europe. In such instances, professionals may still speak of our ‘best interests’ deciding what’s ‘best’ for us. They can decide what is in our ‘best interests’ without ever attempting to find us support to express our wishes, without ever attempting to provide us with advocates of our choice, without ever attempting to provide any particular communication needs we might have, or by simply ignoring what we do say we want. They may hold conferences and meetings about us, without our input, experiences or knowledge. They may decide whether we get resources, support and often the type of support, if any, we may be considered eligible for. Many of us are still prevented from speaking for ourselves: professionals, families -all may decide to say what’s ‘best for us’. This is not to deny that there are also supportive professionals, supportive family members and supportive allies. But it remains the case that no other group has so often been subject to others making decisions for them, as disabled people have been, and continue to be.
Supporting those whose voice has been denied
As activists we have an absolute obligation to speak out about such injustices. An absolute obligation to speak out when we witness others’ voices being silenced. We have an obligation to offer our support. It is for all of us, with the permission of any individual, to do all we can to try and right any wrong and to publicise any abuse of human rights, once we are armed with the facts and evidence.
For example, in the UK recent cases have revealed a spate of abuses against disabled people institutionalised or hospitalised which would have continued if it were not for the intervention of allies, families, workers or professionals revealing the conditions and abuses that had happened . Such people can be called ‘whistle-blowers’; often they can be the chosen advocates of those experiencing abuses. They are often subject to counter claims, legal threats, personal attacks on their character and smear tactics by those they are speaking out against . In the case of the UK institutions involved, there were attempts to silence the ‘whistle-blowers’; as a result, it sometimes took years to stop ongoing human rights abuses.
As we all know, this issue is not restricted to the UK. There have been many high profile cases across Europe and internationally, which once revealed shocked nations – all needed people to step forward and expose those conditions, people to reveal either what was happening, or the ways that an individual’s voice and human rights may have been denied. All such abuses needed and need to be publicised and campaigned for. This should happen despite the wishes or tactics of those who would rather that such injustices were not publicised or spoken of.
It is worth recalling here the case of Campeanu v. Romania, involving a young man with learning difficulties who died in an institution and whose death was never investigated by the authorities. Being an orphan, his case was brought to the European Court of Human Rights by an NGO that found him in the institution just before he died. Writing to the Court, the Council of Europe Human Rights Commissioner stated: “in order to prevent and put an end to these abuses, the important role played by NGOs in shedding light on the human rights violations experienced by vulnerable persons and facilitating the latter’s access to justice must be officially recognised.”
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