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)

MSI??? What is it!

The field of MSI (Multi Sensory Impairments) in the country is a new and emerging field. It is characterised by a momentum to surge forward for reaching out to as many MSI persons and their families as possible. One of the highlights of this field has been its professional and cohesive approach. There is a lot of value being added to learn from each other and add on to their own work at this early stage of the field. Till date, the initiatives taken in the field of MSI has been very need-based. As a result, the services are very localised to regions, target groups and purposes. This has been able to bring out phenomenal changes in the field in a short span. And these changes now dictate terms to look beyond what has been already established, to how it can be now strengthened and the ways in which new endeavours could be incorporated within the field.

As we find ourselves in the changing times, there are many new development aspects to be taken up:

Identification: The need of the hour is to identify MSI/ deafblind / multiple disability as a separate and unique category of disability in all relevant statutory laws and documents.

Incidence and Prevalence: It is extremely important at this stage to include MSI/ multiple disabilities as a separate category in different surveys, such as the National Sample Survey Organisation (NSSO).

Assessment and evaluation: For effective assessment, it is necessary to develop a mechanism that could be used across the country (with appropriate regional variations), for identifying children with MSI and their needs. Such a system will empower even the grassroots level workers to identify MSI/ deafblind people in their respective regions.

Human resource development: As the field is emerging and reaching out, it is getting imperative to identify and involve more and more professionals from the single category disability areas.

Philosophy of MSI education: It is perceived that the time has now come, to promote what may be called “The Philosophy of MSI Education’. This approach, while it incorporates many ideas and practices of all the other disability areas such as Visual Impairment, Hearing Impairment and Mental retardation (read learning disabilities), however has a set of codes and good practices that is distinct to the field of multi sensory impairment.

Social Communication: The development of appropriate social communication materials is of utmost importance in order to spread the awareness about MSI and its various implications.

Networking: As more and more people around the country are coming together, they have realised the hazard of ‘professional isolation’ that generally comes with such low incidence disabilities. There is therefore this need to form and sustain continuous networking activities both within the NGOs and with the government sector.

Advocacy:  It is important to assist the community in taking responsibility for their own MSI persons. And this could be done by advocating for the rights and responsibilities of this target group and their family members both at the local community levels as well as in a regional and national level.

Involvement of parents: MSI persons and their parents and other family members are the primary stakeholders of the services established around the country. It is very important that they be involved in the decisions for their child...Nothing About Us..Without All of Us!! 

Communication is the KEY....Inability to express does not mean I have nothing to SAY!

From the beginning of human race, communication is the basis of interaction and the barriers to communication faced by deafblind individuals, deny them of many independent interactions with the world. Deafblind people are seriously disadvantaged in terms of accessing information and their needs are very different as compared to people with single disability such as blindness or deafness. Deafblind people can neither communicate by ‘talking’ as visually impaired nor ‘receiving’ information as hearing impaired.

Due to the lack of communication, the problems deafblind individuals face- include feeling of isolation, lack of independence, difficulty in obtaining education, and inadequate employment opportunities. The underlying foundation of these problems is a barrier to communication. In the past, overcoming these obstacles has been difficult, if not impossible but today, combining recently developed technologies to facilitate communication will allow deafblind individuals to bridge the communication gap. If the need for interpreters could be  reduced (it can never be eliminated), the independence of deafblind individuals would be greatly improved.

Recently with the support from Rotary District 3050, my colleague- Zamir Dhale (Advocacy Officer in Sense India) got his Braille Display Unit (ESYS) which he can connect (via bluetooth) to his mobile phone and send/receive text messages and respond independently. Now he does not depend on any of us to "talk" to his wife Nasrin over phone and he can also fix up his appointments with government officials for advocating the rights of deafblind people!  

Change all these politicians

While condemning the cowardly act of the terrorist, I salute the brave-hearts of Mumbai- the security personnel, staff of both hotels as well as the common mumbaikar! Shame on the politicians who are once again busy in blamaing each other and showing that they care for us more than the other. Some of them have already started their age-old 'hate campaign' but now is the time that we all show them that- "we are fed up with all this and that we are not going to tolerate any non-sense". Let us change the political atmosphere in the country by coming to gether....we have always said- "Hindu, Muslim, Sikh, Isaai- Aapas me hai bhai-bhai" but now is the time to prove it and say-
Hindu Muslim Sikh Isaai
Band karo yeh aapsi Ladaai
Mat suno in netao ki duhaai
Abhi to bano sach me Bhai-Bhai!!