By Unnati Bose:
Despite the evolution of public health in India, the discourse around disability leaves much to be desired. General awareness about intellectual and learning disorders remains mediocre, although we see some positive steps in the past few years with initiatives such as the Rights of Persons with Disabilities Act, 2016.
Amrit Foundation of India is an NGO that works on the issues of learning and intellectual challenges. They use the term ‘challenges’ to acknowledge the progress that has been made at an individual and societal level, to imply that unlike disabilities, challenges are mutable. They can be battled and addressed if the individual is supported and equipped with requisite resources and society is ready to absorb change. In order to support persons and families facing challenges, Amrit provides support through advocating for inclusion, making access to information easier, and creating new knowledge.
In this regard, the forthcoming Patang Project addresses a whole host of questions, but the most insightful to an outsider to this world is the subject of resilience.
Discourse on improving conditions and facilities for children with challenges (CwC) and their caregivers remains oblivious to the resilience strategies that these children and their caregivers adapt to deal with the challenges that the world presents.
The Patang Project defines resilience as the attitudes and actions adopted by an individual to thrive in the face of adversity. Resilience study suggests that individuals can respond in one of two manners to stressors: protective or promotive. Protective attitudes and actions stem from a sense of fear and vulnerability. Children may become under-confident or caregivers may become overly sceptical of institutions and society; some may withdraw into an imaginary safe space while others may display signs of mild or severe aggression. Promotive responses are enabling traits that promote the overall wellbeing of CwC and caregivers. Participating in social functions and activities, undertaking mentorship for other CwC, joining more and more community groups, etc.
Each come with their own costs to the CwC and caregiver – less time, money, loss of social interactions, etc. The costs can be financial, social or transformative. Financial costs include the cost of diagnosis, treatment or other enabling services such as speech therapy for children with autism or investing in a mainstream school.
Social costs include the cost of missing out on potential social relationships that are routine to other children and their parents. Caregivers may miss out on family functions, children may hesitate in going out to play with other kids, etc. Transformative factors stem from the environment and include things such as support from neighbours, welcoming attitude on part of mainstream schools towards children with challenges, greater awareness among the society about intellectual challenges, etc.
The Patang Project describes in detail the resilience strategies adopted by children living in Delhi and their caregivers. These include the challenges for the family in their social environment, the level of acceptance of CwC in their own family as well as society, their participation in social activities, resilience strategies, costs of challenges, etc. Through this piece, I attempt to address the issue of immediate challenges, acceptance and resilience strategies.
There are many difficulties at the pre-diagnosis and diagnosis stage itself. The diagnosis seeking pathway is long-drawn; caregivers have to engage with multiple health care providers. Many caregivers complain of not receiving a validated and clear judgment from any one service provider. This compounds the problem of delayed diagnosis because family members have to hop from one service provider to another – an activity that is also contingent on the resources available to the family as well as their awareness levels. For a family dealing with the possibility of their young child having a disorder, these challenges are bound to severely stress them and their finances.
The Patang Project found that one in three learning challenges were diagnosed at or after the age of four years. All children with Down Syndrome, a condition that could be detected in utero, were diagnosed after birth. It is also important to consider the poor levels of societal awareness around developmental challenges. Half of all caregivers studied in the Patang survey had never heard of their child’s condition before. This aggravates their physical and emotional exhaustion for they are more likely to be misguided or misunderstand diagnosis and treatment.
Once a CwC is diagnosed with a disorder, the family may display varying degrees of acceptance to the situation. Unfortunately, in many situations, the child and his disability may become a source of contention between family members. In the Patang survey, one in five caregivers said they were uncertain of their family’s support towards the child. There was a case where the father abandoned the family when he found that his son was autistic.
A grave source of concern is the aggression seen in many CwC towards others. This makes it harder for caregivers, who are overwhelmingly mothers, to provide unconditional and wholesome support and care to them. This may alienate not just friends in the same age group but also cause other family members to become afraid of them, reducing the scope for further inclusion.
Socialisation plays a key role in shaping the personality of a child. Many a time, CwC feel alienated and excluded by their peers. A key role is played by neighbours and extended family members. While neighbours could support the care of CwC by offering to babysit while the caregiver is away or helping out in times of additional stress, many of them choose to ostracise the child and their family. This worsens the family’s worry of the child’s safety outside of the home, a major problem for those whose children seem to wander outside of home and are unable to figure out a way back.
Social functions such as marriages and other festivals also become situations of embarrassment for the family, and therefore, they mostly choose to opt out of them. On being constantly quizzed by other family members, the child and their family feel unwelcome. At times, this also exacerbates the child’s symptoms and makes them a source of ridicule. About 20% of Patang respondents said they felt uncomfortable going to social functions.
One of the most relevant social interactions in a child’s life occurs in school. The case for inclusive education and for CwC to go to mainstream schools has been established and accepted by most members of the discourse.
However, caregivers continue to complain of lack of information and sensitivity of the schools to the learning challenges that many of these young children have. Poor social awareness is a major barrier to why parents hesitate to send their kids to mainstream schools because of the absolute lack of preparedness at the end of schools.
Typical worries expressed by caregivers are that peers might bully or ill-treat CwC or that teachers are not equipped to take care of them and account for the challenges faced. Teachers have been known to discourage the children from continuing education. There are some schools that even out-rightly reject the child.
Over a fourth of the parents said their child didn’t go to a mainstream school because they were refused admission. One school rejected a child with Down Syndrome because he was ‘too different from the other children.’ This apathy and fear of diversity in schools must urgently be addressed.
There exists a case for the government to take onus and leadership to improve these social conditions and awareness around learning and developmental challenges. Up to 75% of the caregivers listed the government as their primary provider. This could be due to the relatively lower costs and ease of accessibility (which is still a very poor benchmark). However, Patang also found that government services scored far lower than NGOs and private providers when it came to quality of services being provided.
With time, families become more accepting of the child’s condition. Some families resign stoically into living a mostly isolated and rather miserable life. Generally, it is the fact that the challenges will be persistent and life-long that is hardest to settle with. Once this barrier is overcome, families look towards opportunities for enabling their child so that they can participate in the society on an equal footing.
For instance, finding the right educational service is a crucial aspect of this enabling process. Parents want to invest in the child’s potential future in the society and want to equip him with the know-how of taking care and sustaining themselves independently. Arts, small entrepreneurial ventures and vocational training seem favourable and accessible to CwC and their families.
An interesting resilience strategy is to find solace and co-operation in the company of those with a similar experience. Some healthcare providers organised social activities where caregivers and experts would interact with one another. These proved to have developed useful bonds which facilitate an exchange of knowledge, experience and support.
In India, the lives of Persons with Challenges (PwC) and their families go completely undocumented and as a consequence, no one thinks of these communities – neither in retrospect nor in prospect. This severe inadequacy of data and initiative must be addressed urgently.
While the Patang Project is a welcome step in this direction, it is certainly not enough. The onus lies with the government, civil society groups as well as NGOs and private service providers to take the initiative of learning about PwC and caregivers. Only once we know the challenges they face, can all the stakeholders come together to think about effective solution strategies to improve their situation.
Read more about the Patang Project here.
(Unnati Bose is a final year student of B.A. Economics (honours) at the Sri Ram College of Commerce, University of Delhi. She interned at the Amrit Foundation of India during July-August 2017.)