INVISIBLE VOICES OF THE INTELLECTUALLY DISABLED
Children with severe to profound Neurodevelopmental disorder have been often demoted as hapless victims of society. In the past, many assumed that disability was a ‘personal problem’ and a chastisement for their past sins. In Hinduism, “suffering, both mental and physical, is thought to be a part of the unfolding of karma or the consequence of past inappropriate actions that occurred in either one’s current life or a past life”(Whitman, 2007). Many times, they were often kept in isolation and were sent for traditional or spiritual healing practices where abrasive and tormenting rituals were performed as the cure. In India, blind beliefs in supernatural praxis have been highly prevalent for treating mental illness, especially in tribal, rural and semi-urban areas (Dein, 1997). These beliefs centre around spirit possession, witchcraft, breaking of religious taboos, divine retribution, the capture of the soul and many more (Dein, 1997).
Even in the Brahmanic textual traditions and Yajnavalkya-Smriti (derived from Manu-smriti) excluded those with disabilities from inheritance. (Buckingham, 2011) Yajnavalkya-smriti mentioned the disabled as “a madman, an idiot, one born blind, and he, who is afflicted by an incurable disease” (Colebrooke 1797, CCCXXXI, 24) (Buckingham, 2011) Those with physical or mental impairment were denied legacy as they were believed to be incapable of performing the rituals (Buckingham, 2011). One of the most popular Hindu mythology epics, Mahabharat depict that the ones with disability were considered as deficient in power; Dhritrashtra and his younger half-brother Pandu were trained Military arts but hindered by his handicap, Dhritrashtra was unable to wield weapons, but was strong enough to crush iron with his hand (Ramesh, 1997). When it came time to nominate an heir, Vidura said: “a blind man (Dhritrashtra) cannot be a king.” However ultimately, Dhritrashtra was crowned as the king of Hastinapur. Another example is of a Vedic sage Ashtavakra, a Brahmin who once entered into a debate at King Janaka’s court was mocked by the intellectuals on account of his disability, “ Such an ugly boy, hoped to defeat the great sage like Bandhi…That was hilarious…”(Krishnan, 2012) even when he had mastered the holy scriptures at an early age (Jha, 2016). However, after everyone stopped laughing Ashtavakra laughed out in tears and said “Are these the great sages, who were going to fight a debate with me? King Janaka, I thought your court was filled with great pundits, I can see only cobblers here. A cobbler looks at the skin of the material and decides whether it can be made into shoes or not…Your people are not any different…They don’t know what I can do…They looked at my body and decided that I could not fight the debate”(Krishnan, 2012). Hence, disability in past was often stigmatized and portrayed in a negative light but often these prejudices were defeated.
A child once identified by with a noticeable level of impairment or deficiency is denoted as ‘disabled’. Individuals with Intellectual anomalies have been assumed as ‘inferior’, as the term disability is assumed as lack of deficiency or medical deficit. (Bhattacharyya, 2014). R.L. Schalock of American Association of Intellectual and Developmental Disability (AAIDD) defines intellectual disability as being “characterized by significant limitations both in intellectual functioning and in adaptive behaviour as expressed in conceptual, social and practical adaptive skills. This disability originates before the age of eighteen”. (Schalock, 2010)
In the present, the Intellectually disabled have remained invisible in society and have been regarded as incapable, unable to live independently or ones who are unable to make decisions about their own life. Society fears the consequences in terms of procreation, wishes to keep people with ‘disability’ in a state of ‘suspended childhood (Burns, 1992; Brown 1994). Parents often perceive that their child is dependent for a lifetime and is incapable of having a maverick lifestyle and hence restrain their child from being themselves. The children with Intellectual disability are often viewed as unusual, vague and indifferent by their peers and their behaviour is often unacceptable to the society. So parents of children with special needs start withdrawing from opening up and often confine themselves and their child to the four walls of their house which exaggerates the situation and transforms them into over-protective parents. This over-protective environment disempowers the child with intellectual disability as the parents preconceive the notion that their child cannot engage and that some parents are so convinced that they know what is best, that the individual may have little involvement in decision making (Dyke et al., 2013; Knox & Bigby, 2007)
Decision-making capabilities are critical skills for both personal wellbeing and an individual’s sense of identity (Bigby et al., 2019). Decision-making is a central element of self-determination, empowerment and social inclusion. (Werner, 2012) Parents often focus on concerns about their child’s vulnerability, skill level, awareness of consequences and limited decision-making capacity. (Thomas, 2009) Due to their belief that family is responsible for their actions and protection of the individual, they believe they know what is best for their child. (Thomas, 2009) When parents continue to take responsibility for matters such as accommodation, transport, financial management and service support co-ordination, the family member with intellectual disability may unintentionally be denied the practical decision-making experiences that contribute to decision-making competence and confidence (Suto et al., 2005). So, as early one encourages the child to make simple decisions or make choices, the easier the process of self- determination becomes in adulthood.
Giving the child the voice to communicate. For children with severe intellectual disability may not necessarily have speech or command on a language to communicate. But communication can take place through actions, facial expressions, eye movements, hand movements etc. They may experience difficulty in decision-making and would require effective support to ensure that their voices are being heard. However, this difficulty does not automatically imply that the child cannot make decisions about their life. Parents must encourage the child’s way of communication, and be instrumental in advocating the rights of their children with disability irrelevant to the social situation and surrounding. Do not disempower the child because of the overprotective environment or because you think you know what’s best for your child. The use of alternative augmentative communication system or even communication boards from a young age can give the voice of expression and substitutive or supportive decision making can yet give individualistic identity to the child and the confidence to live independently.
It is essential for parents to support their child, and must expose them to a variety of social conditions and new environment so the child feels the desire and need to express. Many times, children react differently to a particular scenario, however, this does not mean that it is incorrect or inappropriate. Rather it is for the surrounding members to accept the ‘abnormal’ as the ‘normal’. When a child is encouraged to be a part of the situation and is motivated to express itself, he develops a sense of belonging and trust with his surroundings. Such situations stimulate decision making and sense of individuality. Parents must not be afraid to let their child manifest their feelings amongst peers, as early childhood is exposed to individual variations and personality difference, the more accepting and flexible they become towards the inclusive environment.
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