Indian “story”

We, who work alongside deafblind people and their families, do not claim that deafblind people are the only group of poor people in the world. But we do say this: deafblind people are amongst the most marginal, the poorest of the poor communities in the world. Their experience of “social exclusion” – to use the jargon of the international community – is as profound and as debilitating, as any of the poorest communities in our society.

In the experience of Sense International, documented through over 10 years of active work in both the developed and developing world, deafblind people are uniquely vulnerable: subject to institutionalisation, stigma, isolation within the wider community and families, denied the opportunity to work, denied the opportunity to take their place as citizens with equal rights.

In this paper, I will give insight in to the work of Sense International, and attempt to articulate the challenges for all us who believe in the concept of human rights – to look at how these fundamental rights, enshrined in international law and – very often – national law, can be extended to deafblind people.

I will argue that, at the heart of deafblind people´s experience of social exclusion, is the invisibility of deafblind people in the policy deliberations and programmes of national governments and NGOs. For too long, the major institutions of government and NGOs have ignored the violation of deafblind people´s rights. Now is the time for change.

More particularly, I will argue in favour of First, placing a major emphasis on influencing, lobbying and campaign work – two areas where the community of deafblind people and their co-workers have traditionally been less strong And Secondly, the need to mainstream deafblind people´s rights within existing human rights and anti-poverty strategies.

I speak today as a campaigner. As an “angry” man, impatient for change. As a person who believes that speaking today, as I am, in the 21PstP Century, that the violation of deafblind people´s right to be included within our societies, is unacceptable. But I also speak as an optimist: as someone who cannot fail to be impressed by the large numbers of people who are now engaging in deafblindness – looking around this room today, I am filled with optimism that, with your help, the moment for change has arrived.

Campaigning is at the heart of what Sense International does as an organisation. Our mission statement declares: “We believe all people have rights and responsibilities, should be treated with dignity and respect and should be valued. We actively promote

• The right to a good quality of life and services, tailored to the individual needs of deafblind people

• The right to opportunities which promote learning, self-determination, choice and fulfilment

• The right to equal access to services, equal opportunities for employment and inclusion within society

• The right to empowerment, for instance through access to information and participation to decision making.”

At the heart of our vision for change, is the role of deafblind people themselves, and of their families. This is expressed through what we term “the social model of disability”.

The social model teaches us that at the heart of disabled and deafblind people´s exclusion from society, are the barriers society places in their way.

The person who uses a wheelchair and arrives at a conference such as this, to find that there is no ramp, is not the problem. It is the lack of a ramp which is the problem, the problem which prevents that person from participating in this conference.

Equally, for the deafblind person, their need for support from a Communicator-Guide in order to participate in this conference is not the problem. It is society´s refusal to legislate, finance and develop training for Communicator-Guides which is the problem.

Deafblind people do not require you charity. They do not require your medical “cures”.

They require the right to be supported in ways which ensure their right to take their place within our societies.

I say that I am surprised, here in the 21PstP Century, that deafblind people remain so invisible. And with good reason.

As Bert Lindqvist, the former UN Special Rapporteur on Disability has said: “Disability is a human rights issue. So long as disabled people are denied the opportunity to participate in society, no one can claim that the objectives of the Universal Declaration of Human Rights has been achieved.”

The 1990s have transformed the context in which governments and NGOs work. building on this original Declaration of Human Rights.

Declaration such as the Convention on the Rights of the Child, the UN Declaration of the Equalisation of Opportunities for Disabled People, and UNESCO´s Salamanca statement, have provided an international framework to judge the actions of governments and NGOs. And yet, when we think of deafblind people, how little has been achieved.

To take one example. The 1994 Salamanca Statement makes explicit reference to deafblind children´s right to an education: “Educational policies”, we are told, “should take account of individual differences and situations… Owing to the particular communication needs of deaf and deaf-blind persons, their education may be more suitability provided in special schools or special classes and units in mainstream schools.”

And yet, we ask ourselves, how many deafblind children are in education? What is the attitude of national governments to specialist educational provision? Where are the classrooms, where are the teacher training programmes? Where, in fact, are the children? To take one example: here in Colombia, just 50 children are included within two special schools here in Bogota and in Medellin; the Colombian government supports just 50% of the costs of just one of these schools.

Equally, the rights of enshrined in GOVERNMENTS etc

In part, this reflects the lack of visibility of all disabled people. As Deborah Eade, a colleague working for OXFAM in the UK, has said: “the rights and needs of people with disabilities and their carers are seldom expressed in conventional development or relief programmes” run by governments and NGOs.

But the truth is deafblind people are a “minority within this minority” of disabled people. Even within the wider disability movement, the rights and needs of deafblind people have been overlooked.

There are many examples. The lack of recognition of deafblindness in legislation, the lack of research in to the nature of deafblind people´s experiences of social exclusion, the lack of services, the lack of representation of deafblind people in policy forums. However, I would like to focus on two areas in particular:

First, the lack of statistics. The lack of statistics is incredible. The fact is that no adequate statistics are available. For example, studies in the UK would suggest that there are at least 3.1 in 10,000 school aged deafblind children. Over the past two years, Sense International has launched a series of investigations, working with our partner organisations in countries such as Brazil, Colombia, Peru, Portugal, Romania and Russia. Needless to say, these are the first such investigations ever to have been undertaken in to the exclusion of deafblind people.

We have used as our guide, the definition of social exclusion common in the European Union. At its simplest: “An individual is socially excluded if her or she does not participate in the normal activities in that society.” This lists at least 15 dimensions of social exclusion

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