Contents – Narrating Care: Disability and Interdependence in the Indian Context (Issue 39)
Contents - Narrating Care: Disability and Interdependence in the Indian Context (Issue 39)
Sep 16
Guest-Editorial – Conceptualizing Care: Between interrogation and negotiation
By Nandini Ghosh and Shilpaa Anand
Informal family care in the context of genetic disorders
By Namitha Kumar
I will outline my own case tracing the trajectory of caregiving and care receiving beginning with my diagnosis of thalassemia at the age of 4. In the early 80s, there was practically no concept of “paid care” in India. Usually families employed a helper to provide some sort of assistance to the mother or grandmother or whoever was looking after the child. I was primarily cared for by my mother and paternal grandmother, while my grandfather met a number of doctors and genetics researchers both in India and abroad to see if a cure was possible.
Concealing Care: A Strategy of Exclusion
By Yogesh Kumar Yadav
My experience has shown me that people maintain deeply prejudiced views about blind people. While visiting different libraries and archives with my hired research assistant in search of data, I found that people pity me and at the same time shower her with their blessings for her ‘kindness’ towards me. While taking autos or rickshaws to commute, I have noticed that auto drivers or rickshaw-pullers behave as if they are performing charitable acts, as if they are doing me a favour by giving me a ride.
“Dear Mom, Now it’s My Turn!”: A Personal Account
By Sameer Chaturvedi
I don’t know if it was a good decision or a bad one but on joining Hindu College for undergraduate education I made my mother aware of my desire to join the college’s Hindi dramatic society, ‘Ibitida’. I was a bit skeptical as the timings could impact my physiotherapy sessions. She asked me to fulfil my desire as these opportunities come only once in life. But, yes, I do regret not managing my time well, as my physical therapy suffered a lot.
My disability cannot stop me from becoming a caregiver
By Kapil Kumar
In my view, in true sense, caregiving and care receiving are to understand the feelings of others, to respect the emotions of others, to have empathy towards others, and to have a spirit of associating oneself with others. On all these counts, it is most likely that disabled people fit the bill better. On the basis of my own experiences of interaction with disabled as well as non-disabled counterparts, I must argue that the sensitivity which is desired from an individual, in its fullest form, is intrinsic in a disabled person.
The Limits of Caring: Who ‘Cares’ at all?
By Navneet Sethi
Being born with an orthopaedic challenge, the dynamics of caring has been inexorably inclusive for me. Born to parents who embody the experience of unconditional love at its best, I am interested in trying to explore the multiple dimensions of the concept of “care” itself. Through this article, I will try to share ideas that extend the definition of care as viewed from the perspective of not only a care receiver but care giver as well. These dynamics of care need rethinking and extension to include the point of view of the care giver as well.
Care giving and care receiving: Everyday difficulties of living with endemic skeletal fluorosis in Telangana, South India
By Venkatesh Boddu
Fluorosis not only makes an individual suffer from disability but also cripples familial relations and becomes a reason for long-running conflicts within the family because it involves a lot of care giving. However, it must be noted that people with this kind of disability are not only recipients of care but are also active as care-givers to others in the family. My informants reported that they are involved in familial matters and help their family members in the best feasible way.
“Congratulations, nothing is wrong with you! You are ‘Normal’…”
By Ritika Gulyani
Another thing that bothered us was that the doctor who administered the tests told him, while he was leaving, that nothing was wrong with him and congratulated him on being ‘normal’. I have never seen him aware of his condition more than after that day. He was visibly upset when the doctor said that. He even confronted my mother, wanting to know what ‘normal’ meant. That was the day the distinction between ‘normal’ and ‘abnormal’ crept up on him.
Alzheimer’s and Amma
By Nishi Pulugurtha
Amma needed constant supervision and care and I became her primary care-giver. She had always been a very active, independent individual. Having worked since the age of seventeen, Amma had been the sole breadwinner in a family of seven, having lost her father to cancer at an early age. She attended evening college to complete her undergraduate studies and then did her post graduation in the distance mode. She even took the Rashtrabhasha Visharad examination in Hindi to learn the language.
Reflections on Care by an ‘Autism Mother’
By Shubhangi Vaidya
While I was equally concerned about the welfare of both my boys, the feelings of anxiety and concern with regard to my son who has autism were more acute. Reading the piece years later and revisting the emotions that prompted me to write it, the intensity of the care relationship is apparent. My own research indicates the sense of indispensability that mothers of children with disability confer upon themselves; their conviction that it is only their love and care that their child can count upon in a cruel and judgmental world.
Disability, Care and Sexuality: Notes from the Field
By Soniya AM
During my recent field trip, I realized that the sexuality of persons with intellectual disabilities is never acknowledged, not even when they are subjected to sexual violence. After several days of interaction with the parents and teachers in the school, they told me that some ‘kids’ were sexually active and that there were several instances of sexual overtures and relationships among the children in the school. I was also told that the teachers were monitoring the children as there were possibilities for potential sexual relationships among them, something they did not favour.
We are Both Disabled! A Marriage of Appreciation
By Shruthi Shruthi
Venkatachalam and M. Anjum Khan
One can trace the evidence of relationships that challenge common notions of care, where the care giver is commonly seen as powerful and the care receiver is identified as weak. The narratives signify how the awareness of one’s own self as disabled and having a shared experience with the partner, who is also disabled, establishes the importance of interdependence and how it facilitates to minimize the power imbalance between the disabled couple.
Interrupting caregiving, inviting distress-sharing: Narratives of care from people living on the streets
By Sudarshan R Kottai and Shubha Ranganathan
In fieldwork, we have been to certain homes of ‘street-dwelling patients’ who were ‘rescued’ and offered treatment. In some cases, we found their homes to be more pathetic than the open streets. We saw many homes which are single rooms that need to be reached through treacherous lanes in slum areas where cooking, sleeping, and eating all occur in the same room. Drainage lines often flow just in front of the single room house and altercations over common water and toilets were everyday phenomena.
Role of Women in Endosulfan Disability Care
By Sujitha
My mother provides selfless and full-time care to my brother without expecting anything from him. In my opinion, caregivers suffer more than those who are disabled. My mother takes the role of a primary caregiver without being able to take a break or wishing for a better future. She has put aside her life to commit to nursing him full-time. My sister and I know that in my mother’s absence it is our responsibility to look after him.
Experiences of Caregiving Stigma: Contestations and Challenges
By Manoj Joseph and Srilatha Juvva
The gender and biological proximity of the caregiver shapes the nature of parental blame that they are subject to. Research participants shared that there is a widespread belief among the people that the genetic predisposition of mother of the child and her family lineage are responsible for the birth of a child with disability. Hence, they must accept the blame. Such beliefs put mothers in a vulnerable situation where they experience stigma of contamination. It can influence future parental choices with respect to pregnancy and abortion.
Caring for a child with Autism spectrum disorder (ASD)
By Mitu De
The uniqueness of each person with Autism spectrum disorder (ASD) makes the experience of living with autism different for each family. The Autism Spectrum includes deficits in social communication and interactions, deficits in nonverbal communication, including the recognition of facial expressions, restrictive and repetitive patterns of behaviour and interests, deficits in social-emotional interactions, and issues developing meaningful relationships.
Dog Eat Dog World: Animal welfare and working with disabled rescued dogs
By Anoopa Anand
With every new rescue that I work with, it becomes more and more obvious to me just how little respect we have for other species. Almost every dog that I have tried to rehabilitate has been the result of rampant commoditization of the species. Humans buy, sell, and breed dogs with little concern for the very specific and alarming congenital health issues that we have knowingly and unknowingly bred into them. We “discard” “unsellable” “specimens” with casual ease.
