Educational and research collaboration with India: Challenges faced by speech and hearing professionals from other countries

M. Jayaram, PhD Senior Professor and Chair Dept. of Speech Pathology & Audiology National Institute of Mental Health & Neurosciences, Bangalore - 560029, India

Email: [email protected]

India being a plural society offers unique opportunities for work, but also poses many challenges. Hundreds of languages and as many cultures, varied religions, the unique caste system, the urban-rural divide, and issues relating to literacy and economic emancipation, among others, not only offer opportunities but also present hurdles for educational, research and clinical work in the area of speech and hearing in India. However, it should also be said that while the opportunities are many and challenging, hurdles can be easily overcome if one has the pulse of the thinking of the people of this country. The ease with which this is done determines the reward / satisfaction derived from the work. It should also be stated here that the opportunities and hurdles faced in this country are the same for professionals from all over the world, although professionals from other countries may need more time in understanding and addressing the challenges faced in India than Indian professionals. The challenges faced will be more related to clinical work and service-delivery (including education of the speech and hearing disabled – scholastic or otherwise) and to a lesser extent in research and higher education.

Multilingual issues

India is a home for 1652 languages and dialects. The constitution has recognized 16 languages as official languages of the Union. Diversity of languages makes assessment of language status of the clinical population enormously difficult. As clinical services for the disabled population are available to a greater extent in South Indian states and cities, the disabled seek services at institutions located in one of the South Indian states. This makes assessment of their speech and language all the more difficult. Even within a state of the Union, assessment of the speech and language of the speech-language disabled is a problem albeit to a small extent. For example, in the State of Karnataka where I work, Kannada (a Dravidian language) is the spoken language. However, there are at least 6 distinct dialects of the language. Therefore, a speech pathologist in South Karnataka and speaking the distinct form of Kannada of that region will find it a challenge to evaluate the speech-language of

1 disabled persons coming from North-Western or coastal region of Karnataka. The problem is more acute when a Hindi speaking person with speech-language problem goes to the state of Andhra Pradesh (Telugu is the major language spoken in this state) or West Bengal (Bengali is the major language here).

The large number of languages spoken in the country has also influenced development of assessment and diagnostic tests in different languages. It is a challenge (including economic) to develop tests to assess different aspects of speech- language in so many languages (and dialects). Of course, though development of test material in different Indian languages is a favorite topic of research for the speech and hearing professionals in India, we still do not have enough number and variety of tools to assess different aspects of speech-language in even the major 16 languages recognized as official languages. Rate and pattern of language acquisition may be different in different dialects of a given language. We are not in a position to test this because of paucity of test material.

Multilingualism in the country has also posed a unique challenge to speech- language pathologists and special educators. A given child / person with a speech- language problem is generally exposed to 2 - 3 languages – his primary native language, Hindi which is widely spoken in the country, and English. Speaking English and getting educated in English medium are considered to be status symbols of the person - parents of children with delayed speech-language development are no exception. They all want their child to be trained in English which poses unique challenge to the clinician. Of course, this tendency is directly related to literacy levels, but even those coming from rural areas and who may not be particularly well-educated also insist on English as the medium of instruction – for normal as well as for disabled children.

Finally, professionals from outside India wanting to have collaborative projects with their Indian counterparts have to appreciate the dialectic variations in English. Even when an individual is proficient in English, his or her English may differ from American or British or any other English in terms of phonology, vocabulary, grammar, idioms, and pragmatics. What might be considered an “error” or “deficit” on the part of the clinician (or native speaker of English) may actually be due to dialectic and cultural variation.

Cultural and religious considerations

The cultural and religious issues also throw unique challenges to speech- language pathologists in this country. Cultural and religious considerations influence the delivery of speech and hearing services in four ways: one, Hindus believe in “Karma” theory. Karma theory relates to the belief that something bad has happened to a person (like a disability) because of all the sins he / she committed in his/her previous life. Therefore, a disability condition (and issues like that) is something ordained by God. As the disability condition is the result of the sins committed by a person, he has to tolerate that and other human beings cannot do much in this regard

2 (“When the God has willed this way what can human beings do?”). Such a philosophy though has helped the affected people to easily accept their disabling condition, it prevents them from seeking the help of experts in the field, and directly determines the motivational level of the person (and family) for undergoing therapy / intervention procedures.

Two, consanguineous marriages are more common in the southern part of the country than in other regions of the country and this is a direct off shoot of their cultural provisions. Consanguineous marriages do not necessarily lead to disabled off springs, but this factor will have to be considered while counseling the family. The practicing clinician can neither recommend against consanguineous marriages (as the culture allows it) nor be oblivious to the fact the practice of marrying among close blood relatives increases the probability of a disabled off spring.

Three, cultural / religious issues also influence whether a particular procedure can be carried out on a child or if a child / person can be included as a participant in a research work. Parents often do not permit audiologists to screen their baby for hearing before a particular age depending on their belief. Parents more often than not think that if their babies are tested before a particular age, or some religious ritual has been completed, then something bad will happen to their babies. This is one of the hurdles that the professionals face in implementing any program related to early identification of hearing loss, or more particularly relating to new born hearing screening program in this country.

Four, pragmatics of language usage change depending upon the cultural practices of a given speaker. For example, use of singular to address second person is acceptable in some cultures of India whereas some cultures are very rigid about such usage. Indians typically ask personal questions even of people they barely know. This ’inquisitiveness' is not considered an atypical behaviour in our cultures. Therefore, the clinician has to have different standards in assessing aspects of use of language by his clinical population depending upon the cultural practices / tradition of his clinical population.

In many cases, even when medical and rehabilitation services are available, Indian elders choose not take advantage of them. Reasons for this may relate to (a) avoidance of loss of face in acknowledging disabilities and need for help, and (b) cultural preferences to handle needs and disabilities of adults within the family structure rather than through medical or rehabilitation facilities.

The implications of being a female disabled child as against a male disabled child are different in this country. Though this is an issue related to economic considerations for a larger part, culture-related beliefs are equally contributory to this notion. Many parents believe that a male child is going to be the bread winner of the family in the future and that he will take care of them in their old age. On the contrary, a female child after her marriage will go to some other family. Therefore, some parents are more benevolently inclined towards their sons than their daughters.

3 This is evident even with respect to disabled male and female children. A female disabled child is more often than not considered to be a burden. While a parent may go out of his way to get intervention services for his/her disabled male child, he may not be so well motivated with respect to his disabled female child. This has significance for service delivery as well as for the availability of female subjects for research projects.

It must be said here that all issues relating to cultural and religious practices are bound to change with the level of literacy. The higher the educational level of the people, the lesser the influence of cultural and religious practices on issues detailed above under the section on cultural and religious considerations. It is also true that literacy tends to make consequences of cultural practices less negative while the sequel of religious consideration is more rigid. However, it is important for professionals from outside India to know at least basic aspects of culture and etiquette of this country as well as means of addressing cultural and linguistic differences when working with diverse cultured populations in this country.

Incidence and prevalence of speech and hearing related problems and planning of services

We do not have any reliable estimates on the incidence and prevalence of disorders of speech and hearing in India, and consequently on the disability and handicapping conditions. The country conducts census (population count) every 10 years and also a national organization called National Sample Survey Office (NSSO) conducts its own survey of the number of disabled once in 10 years. The last survey of NSSO was in 2002. Statistics on the prevalence of disability from the 2011 census have not yet been released. The actual estimate of the size of the disabled population in this country by these organizations / surveys is not of importance here. But, what is important is the method adopted by these agencies in identifying the disabled and its implication for service delivery.

It is generally accepted that the number of disabled as per NSSO (2002) survey is an under estimation. The actual number of disabled might be even more than this because it is well known that the NSSO surveys and general census is carried by people not well trained in the identification of the disabled. The enormity of the census operation in a country like India (1.2 billion population) does not allow the census to specifically focus on disabilities / disabled, and therefore, it is likely that a large number of disabled may not be counted. Also, it is correct to say that in a census task, it would be difficult to identify mild and moderately affected persons. Besides, surveys of NSSO exclude children from birth to 4 years from their purview. All these imply that the size of the disabled population in India including the speech and hearing disabled is larger than what the statistics indicate.

Relating to this is the fact that no worthwhile survey has been made in this country on the needs of the speech and hearing disabled. We just do not have any information on how many of them need speech-language therapy, or alternate and

4 augmentative communication, or amplification through hearing aids, kinds of hearing aids needed, or cochlear implantation, or what other services are needed. Because the speech and hearing professionals have to work under these uncertain circumstances (lack of information), they have a challenge before them. Researchers and clinicians will be uncertain about issues relating to projects to be taken up, programs to be implemented, development of aids and appliances etc. It is a sort of groping in darkness and there lies the challenge.

Disabled in the rural and urban regions of the country

Somewhat related to the incidence and prevalence of speech and hearing disabled in the country is the issue of urban - rural divide. 70% of India is rural and the rest urban. One would assume that the proportion of the disabled in the urban - rural is also in this ratio (30 : 70). However, poor sanitation, lower literacy rates, poor public education and the consequent lack of information, lack of health infrastructure, and the generally greater poverty among the rural population, among others imply a higher prevalence of speech and hearing disability in rural areas. Similarly, a host of factors like greater environmental pollution in urban areas, large scale migration of people from rural to urban areas because of employment and economic considerations, and changing living styles of our people mean that there is a larger percentage of disabled in urban areas than believed hitherto. The speech and hearing disabled in rural areas face other problems in getting help for the disabling problem. Poverty is one thing. Infrastructure for providing intervention services for speech and hearing services is virtually non-existent in rural areas. Therefore, those who are in need of services have to travel long distances to avail expert help. Considering the sheer size of our population and the vast geographical area, reaching the disabled, more so in the rural areas, and providing them the required services is a mind boggling proposition. Providing rehabilitative or management services to the two ‘populations’ (rural and urban) calls for adoption of ingenious methods of development of infrastructure and service delivery models. Professionals from other countries while taking up collaborative research or higher education programs in India have to be prepared to face this challenge.

Multicultural issues in higher education

Students in our public and private educational system come from varied backgrounds with respect to culture, ethnicity, language, and skills. They have their own set of expectations, abilities and limitations. Preparing teachers to deal with this diversity and impart education that suits the multicultural profile of the country is a challenge. The cultural and language differences these students exhibit can both serve to mask or exacerbate underlying learning, social and behavioral challenges.

There is a need to balance knowledge with social action. There is a rich and deep knowledge base around various cultural, ethnic, and racial groups that we must try to understand in a country like India. It is the heart of multicultural education. However, it is insufficient to take a “tourist” view of multicultural education which is

5 nothing more than a simple study of different groups of people, much like we study different disabilities in different chapters in an “introduction to exceptional children” course. Quite to the contrary, there is a need to understand social action, change, and societal transformation. As emerging scholars, we are agents of change, leaders, and policy makers at the same time. These varied roles demand that we have a deep knowledge of multicultural issues and understand cultural transformation as well.

There is another major issue that is vogue in India which scholars from other countries need to appreciate. This is the issue of social justice. It is said that there are groups of people who have not realized their full potential and therefore, need to be shown special considerations to come up to the level of other segments of the society. It is an entirely different issue that this concept of social justice has assumed an entirely different significance because of the political class. Experts have to keep in mind the conflict between those who benefit from the benevolent policies of the government for meeting social justice and those who are denied such benefits.

Multicultural education is a progressive approach for transforming education that addresses current shortcomings and questions discriminatory practices in education. It is grounded in ideals of social justice and equity in education. Multicultural education acknowledges that schools are essential to lay the foundation for the transformation of society and the elimination of oppression and injustice. The underlying goal of multicultural education is to affect social change. The doctrine of social justice demands universaliziation of higher education. Aptitude and competence of students may take a back seat while meeting social justice because providing opportunity is the main thing.

Evidence based practice

Speech and hearing professionals in this country are aware of the value of evidence based practice. It is essential that evidence be documented for value of money, value of input and value of effort. Evidence based practice requires clarity about activities, outcomes and indicators, and helps discard the ineffective / less effective programs. We clinicians know that evidence-based practice involves integrating clinical expertise with the best available clinical evidence derived from systematic research.

Using a breadth of empirical data in making informed clinical decision is of critical importance, now and hereafter, in the light of the mounting pressure for accountability in our profession. This pressure would only grow in future as the awareness level of our clinical population and their caretakers grows. The day is not too far when our clinical population would ask us the uncomfortable question of what he/she got in return for the money / energy / time they spent on therapy. Also, the clinical population may ask for empirical evidence when faced with a choice. In addition, there is an emerging trend of specialized certification in identified clinical areas. Empirical evidence through evidence-based practice is a sine qua non for the sustainability of such certification programs. Evidence-based practice brings about

6 clarity and precision to our decision-making and obviates the need for trial-and-error approaches to decision making. Informed clinical decision procedures can also be employed in a novel way to judge the development of clinical skills in the students’ community. Simply stated informed clinical decision is in the best interest of the client whom we are serving

In spite of the awareness not much seems to have been done in the area of speech and hearing field in this country. No attempt seems to have been initiated, to the best of my knowledge, even to develop a database which is fundamental to any evidence-based practice. One of the reasons for not attempting to develop any database in this coountry might be that duration of speech-language intervention with any given client is uncertain. The subjects may attend 2, 3 or 5 sessions of therapy and then might disappear hampering creation of any database. Most of our subjects approach the speech-language pathologist keeping the medical model of intervention in mind. They all expect that the clinician will give them (their child) some medicine or recommend surgery and they (their children) would be alright. But when they are told that no such prescription can be expected and that they have to undergo many sessions of speech-language therapy for any worthwhile improvement to be seen in their speech-language, their motivational level goes down. They may attend some sessions of therapy and then disappear. Economic considerations and the distance they have to travel from their home town to get access to expert help may also deter them from undergoing speech-language intervention on a sustained basis and for long durations.

Consumer and researcher mismatch in interest and applicability of research may also be one of the reasons for not being able to develop databases for evidence based practice in this country. Generally, our subjects are more interested in getting the benefits offered by the government than long-term intervention services. There may be many reasons for this which I have outlined at several places above like poverty, lack of education, religious and cultural considerations, ignorance etc. The federal and the state governments give a lot of benefits like income tax exemption, free air and rail travel, monthly financial assistance, aids and appliances etc. to all the disabled. The speech-hearing disabled, more often than not, will be more interested in availing these benefits than in seeking long-term intervention services. This has clearly hampered the professionals in developing evidence based practice in this country.

Also, absence of randomized clinical trials may have hampered the development of databases. Randomized clinical trial studies are considered the ‘gold standard’ of efficacy research. Withholding of treatment to any individual diagnosed with a problem is construed as an ethical breach and therefore, not many randomized clinical trials have been attempted even in the global context. The American Speech- Language and Hearing Association has amended ASHA Code of Ethics to explicitly address the research circumstances that support the ethical conduct of randomized clinical trials. Some randomized clinical trials have been conducted as a result. Perhaps, we may take a leaf out of their experience and implement some of these

7 practices in this country. It calls for an attitudinal change in us to view and respect our clients and their interests as the core of our professional practice. Collaborators from other countries have a role and challenge in promoting evidence based practice in speech and hearing in India.

Conclusions

These are some of the issues that professionals who are not from India must consider to engage most effectively with Asian Indian colleagues and students when collaborating in education and research in India.. I have not attempted to provide documentary evidence, in terms of references, for what I am propounding, but I stand by what I have stated. These issues are well known to, and are generally accepted by the professional community of speech and hearing practitioners, planners and administrators in the country.

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