Deafblindness- Exclusion by Design or Default

About four decades ago Dr. Helen Keller said- “Until the great mass of the people shall be filled with the sense of responsibility for each other’s welfare, social justice can never be attained”, and at Sense International (India), we believe all people should have rights and responsibilities; they should be entitled to dignity and respect and should be valued.  We actively promote:

·       Right to a good quality of life and services to meet individual needs

·       Right to opportunities which promote learning, self-determination, choice and fulfillment

·       Equal access to services, equal opportunities for employment and involvement

·       Empowerment, through access to information and participation in decision making.”

The 1948 Universal Declaration of Human Rights is the starting point for the development of legally binding international human rights treaties.  There are now a large number of such declarations, which set accepted human rights standards for governments around the world. These standards are particularly relevant for countries (like India) which have a high degree of dependence on assistance from the international community, since they emphasize on the expectations of international agencies and donors.

Deafblindness is a combination of visual and hearing loss in an individual leading to the complex problems in communication, mobility and accessing information. It is estimated that there are about 425,000 deafblind people in India and Sense India is the only national NGO striving to develop services for this unique disability across the country. For deafblind children and their families, the Salamanca Statement was a breakthrough.  It was the first major international declaration to make reference to the specific needs of deafblind children (“Educational policies take account of individual differences and situations… Owing to the particular communication needs of deaf and deaf/blind persons, their education may be more suitably provided in special schools or special classes and units in mainstream schools”. Article 21).  However, in the experience of Sense International and its partners, Salamanca has had little or no positive effect on the numbers of deafblind children accessing formal educational opportunities, and there is little understanding of how a deafblind child can be supported within either mainstream or specialist settings.

Organisations like Sense India make two uses of this international framework.  On the one hand, we are actively engaging in influencing government who are responsible for making provision for services for deafblind people.  On the other hand, we are actively developing and supporting service models.  In both contexts reference to the fundamental rights of deafblind people is appropriate.

Other declarations of human rights, such as the Convention on the Rights of the Child (1989) are as relevant for deafblind children as they are for all children, i.e.  the right to an education and the right to adequate health care etc.

However, there is also United Nations Standard Rules on the Equalisation of Opportunities for Persons with Disabilities”, which makes explicit reference to “persons with disabilities”. This outlines the action expected by governments in relation to disabled people across a range of political, social and economic areas and including education, employment, social security, family life, culture, recreation and sports and religion.

UN Special Rapporteur on Disability, B. Lindqvist, observed that- “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 have been achieved.”
 

At the time of writing this blog, groups from across the world are now lobbying with their respective governments to ratify the UN Convention on the Rights of the Persons with Disability. India has been amongst the first 3 countries to sign the convention and we became the 6^th country in the world to ratify the convention. Under Article- 24- Education, Clause: 3-c of the recently ratified Convention, it is suggested that we need to ensure social and educational development of deaf, blind and  'deafblind' children.

Even after almost eighteen years after Salamanca, the overwhelming majority of deafblind children remain excluded from education settings.  Deafblindness is not recognised as a distinct disability; national education plans for achieving “Education for All” do not make explicit reference to deafblindness; no statistics exist to underpin the planning of education provision; there is a lack of expertise in the classroom; and little consultation takes place directly with deafblind children and their families themselves.  Those who are in school struggle in the face of large ‘children : teacher’ ratios and teaching approaches which fail to take account of the specific communication needs of deafblind children hence drop-out rates remain high. In this situation, what choices face an educator, or an advocate working on behalf of the deafblind child?  Is it not better to keep a child at home, providing specialist individual support through a parent or a field worker?

For Sense India, inclusion remains the goal of our work.   But what do we mean by inclusion?  For us, it is about bringing deafblind children in to state education opportunities, not for its own sake, but rather for the proven benefit it will bring to the individual child who is isolated in their community and/or institutionalized.  

Our approaches to development need to be based on the principle that deafblind people have rights, and that it is the denial of these rights which is the fundamental problem. The problem is not that people are deafblind, but rather that governments have failed to build inclusive societies which empower deafblind people to full participation. We need to make explicit reference to the rights of individuals as enshrined in international law and national legislation and design strategies to influence government with an eye on “replication” and “sustainability” and the impact they have on policy development.

Adopting a rights-based approach also has implications for us as individuals.  We are in positions of power in relation to deafblind people and families.  For example, we control the flow of money and ideas. Thinking about the implications of this agenda for how we act as individuals involves personal as well as organisational change.  A few quotes to end this blog– and to get you thinking:

"Oppression, inequality and exclusion are not inborn characteristics of individuals, nor predetermined experiences, nor a function of individual impairments.  They are socially produced phenomena in which socially contrived solutions can be applied."  (Ramcharan et. al., 1997)

"Professionals acting as a resource to be used by others need special education and training so that they are able to promote control by disabled people.  To do this, professional workers will need new communication skills, new professional codes of practice, new ethics, new rules of confidentiality….  The need is for new relationships to develop between helper and those they help."  (Finkelstein, 1981)

"At best, development professionals are forming real partnerships with disabled people's organisations, supporting them to undertake the work they have identified as important.  At worst, development professionals continue to function in 'charity mode' or 'expert mode' or 'rescuer mode'."  (Stone, 1999)