Role of Disabled Persons & Families in the Equalization of Opportunites

by Suresh C. Ahuja
Executive Director National Association of the Blind, India
Chairman World Blind Union Committee on Social Development

When we look back in time we find that the beginnings of work for the disabled leading to better opportunities, more services and programmes were initiated in many cases either by the disabled themselves or by their families. Perhaps the best example of this is Louis Braille, the inventor of what is now come to be known as the Braille Script which has provided blind people with the most satisfactory means of reading and writing by touch. Braille indeed opened the flood gates of knowledge to the blind and removed one of the major obstacles in the path of equalization of opportunity for blind people.

Leading organisations for disabled people in India providing educational, vocational training and employment services were established by family members. Mrs. Fatima Ismail, the mother of a Polio affected child was the founder of the Fellowship of the Physically Handicapped in Bombay. Mrs. Mithu Alur, the mother of a Spastic child established the Spastic Society of India. The motivating spirit behind the establishment of the organisation for the blind in the country was Mr. R. M. Alpaiwalla, a blind lawyer and its founder President for the first ten years.

Since the '70s, organisations of disabled persons have come into being in most countries. In Asia, Latin America and now in Africa too. Perhaps the earliest of these organisations was the Blind Men's Association of Bombay established in 1974 by a group of blind persons. Today there are a number of similar organisations in India including the National Federation of the Blind and the All India Confederation of the Blind.

Physically handicapped persons have also made attempts to establish similar Federations / Organisations but they are still very much in the nature of local groups. Today, in many developing countries and particularly in India there is a proliferation of agencies and institutions providing services for the disabled. Yet, we are a long way from achieving the goal of equalization of opportunity. Most agencies are managed by well-meaning and dedicated persons often in an honorary / voluntary capacity but unfortunately lacking knowledge and insight of the real needs of the disabled. Consumer participation is yet not fully accepted as a principle of management of such agencies. Boards of Trustees and Committees of Management of the agencies and institutions which generally consist of retired citizens and a large proportion of housewives from the higher social strata often consider that they know best as to what the disabled need. They do not consider it necessary to ascertain the views of the disabled themselves. As an illustration, it is interesting to note that even in the '80's when the sighted reader has access without censorship to literature and reading matter of every description, recording services for the blind in many developing countries still generally select books with a religious, educational or moral bias. Books on sex or novels with sexual overtones are scrupulously avoided. This would not be the case if blind reader were consulted and were on committees that select the books for recording / brailling.

Invaluable pioneering work has undoubtedly been done in the disability field by honorary / voluntary social workers. In fact, much of the development that has taken place to date is the result of their efforts. Unfortunately though, they have not changed enough with the times. They have not realised that today it is necessary to work WITH the disabled and not FOR the disabled.

Economic independence is the most important single factor that can lead to equalization of opportunity and meaningful existence with self-respect and dignity. In the developed and more affluent countries, economic independence can also be secured through social security measures. In the developing counties however, social security is virtually non-existent and hence employment with adequate wages is of prime importance. The disabled need jobs even more desperately than the able bodied but as may be expected with unemployment and underemployment plaguing the countries in the Third World, they find themselves on the lowest rung of the ladder. For most disabled people getting a job is difficult. By and large those who do succeed in finding jobs are able to do so in the lowest paid ones requiring little skill or ability - very often, far below their abilities and potential.

Education and vocational training facilities for the disabled in most developing countries have remained stagnant. While science and modern technology have made tremendous leaps in the latter half of the 20th century opening up new avenues and new horizons for the able-bodied, the disabled are still being trained in traditional crafts and for simple repetitive jobs like basketry, chair-caning, handloom weaving, packing assembly, light engineering etc. Sadly, the opportunities for employment even in these limited fields is dwindling rapidly.

Disabled people themselves and their families cannot and should not wait for Governments and agencies / institutions to take action to improve the situation. They must now take steps themselves to initiate change. Most Governments in the developing countries are faced with gigantic problems of economic growth, industrial development, social upliftment, health, building up of an infrastructure and so on. The disabled are only a small proportion of the general population and hence receive a low priority in their developmental plans.

Agencies and institutions for the disabled find it easier to continue to run on traditional lines. Well-meaning social workers often do not see the need for change. Disabled people can play an important role in promoting their own welfare and creating an awareness in the community of their potential by:

• (a) being conscious of their own rights;
• (b) putting forward their needs before the Government, agencies / institutions and the public at large through the media, representations and available fora;
• (c) enrolling as members of agencies and actively participating in deliberations and decision making;
• (d) being aware of their responsibilities as citizens and discharging the same effectively. This is important as in recent years disabled persons have become increasingly aware of their rights but not of their responsibilities;
• (e) making a success in any chosen field of work. A successful disabled worker is the best ambassador of the disabled. Many avenues of employment have opened up for the disabled as a result of just one disabled person being a success at it;
• (f) forming cooperatives thereby creating work opportunities for themselves;
• (g) learning to be self-reliant and as independent as possible in the activities of daily living, in the work situation and in social relationships thereby portraying the image of a well adjusted and personable member of the community;
• (h) not demanding undue concessions and facilities but only equal opportunities.

The granting of undue concessions and privileges has inherent in it the granting of second class citizenship.

Organisations of disabled people have a very useful role to play. Advocacy of the rights and responsibilities and promotion of equal opportunities is the very purpose of their existence.

"They can serve as pressure groups and watch-dogs of the rights of the disabled. In so doing, it is important that they work in cooperation with Governments and the agencies. Unfortunately, many organisations of the disabled in developing countries have agitations, strikes and other action of a similar nature. They are mostly critical of the Governments and agencies and seldom appreciate any action taken by them. They are known for asking for concessions whether justified or otherwise. While in the short run, such action by the organisations of the disabled yields results, it can prove detrimental in the long run. As a result of agitational tactics, organisations are able to get promises of jobs and promises of reservations /quotas from Governments. It has been found that once the time comes to recruit disabled workers, suitably qualified and trained candidates are not available. It should be the responsibility of these organisations to ensure that suitably qualified and trained disabled people are available before launching agitations. They would do well to demand better vocational training facilities before demanding jobs. In the alternative, they could themselves establish training programmes keeping in view job prospects in the general environment of the country concerned. Basically, organisations of the disabled should take on a positive role rather than a negative one.

Unfortunately, the organisations of the disabled have in recent years indulged in rivalry and infighting. This has resulted in dissipation of their energies. Much work needs to be done in the developing countries. Organisations of the disabled could play a very important role in achieving equalization of opportunities by coordinating their efforts and acting in cooperation with the agencies. Working jointly with the agencies they could become a strong force in persuading Governments to recognise the rights of the disabled and provide for equal opportunities.

The family plays the most crucial role in the life of a disabled person. Apart from basic personality traits of the person concerned, it is the attitude and the actions of the members of the family that determine the future course of the life of the disabled person. It is here that equalization of opportunities needs to and must begin. A disabled child rejected overtly or covertly by the family or at the other end of the scale given preferential treatment is most likely to grow up into an adult with unhealthy attitudes towards himself and towards society. It is imperative, therefore, that the family treats a disabled member as a part of the family without either rejection or "special" treatment. The family should provide equal opportunities of education, work, and socialization. Also, in responsibility. This is the best training the family can provide and it is also a means of assuring that the disabled member is treated normally by other relations, friends and neighbours.Families can provide for some of the special needs of disabled people e.g. reading for the blind, assistance in mobility for the physically handicapped, interpretation for the deaf. Most important of all the family can encourage and motivate independence to the extent possible depending upon the degree of impairment.

In unison with other families whose members may share the same disability, groups can be established. Such groups serve as supports for one another and particularly for families with a newly disabled member. They can also serve as pressure groups both at the agency and Governmental level. They can articulate the needs of disabled persons at times when it is not possible for the disabled to do so themselves e.g. young children, mentally retarded, spastic, multiply impaired. Family groups can play a vital role in expressing the need for and demanding financial benefits for the additional expenses involved in providing support systems for disabled persons.

Disabled people in many developing countries are now taking the lead in promoting the setting up of much needed services and bringing about a change in attitudes towards disability. However, significant changes in attitudes and true equalization of opportunities will occur only when disabled people fully accept their responsibilities to contribute to the betterment of the community and society. Hitherto, they have been at the receiving end - asking for and receiving charity, concessions and special facilities. To achieve equalization of opportunities they need to ask for integration in services and programmes available to all in the community e.g., education in regular schools, vocational training in centres and programmes available to all members of the community and employment along side and along with able bodied workers. They must also learn to give to the community and to share responsibilities with other members of the community. Only then will disabled people attain or achieve equalization of opportunities. Let me in conclusion give you the example of a blind person who is employed as a teacher in a school for the blind in a small town in India. In his spare time he visits slums where he motivates children to get enrolled in schools, gives them tuition if necessary, arranges to get them text books and other educational material, promotes adult literacy and teaches crafts to the women with a view to helping them to earn some extra money. All this is on a purely voluntary basis for which he receives no payment. In many of the slums he is accepted as a friend. He is not regarded any longer as a poor helpless blind person but is now treated as a much respected member of the community.

Disabled people are a large enough section of the human resources of any country. They can be converted from tax consumers to tax payers, from beneficiaries to benefactors, given the opportunity for self-development and provided with equal opportunities for education, vocational training and employment.