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Posts tagged ‘Disability’

Contents – Narrating Care: Disability and Interdependence in the Indian Context (Issue 39)

Contents - Narrating Care: Disability and Interdependence in the Indian Context (Issue 39)

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Contributors

Contributors

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Guest-Editorial – Conceptualizing Care: Between interrogation and negotiation

By Nandini Ghosh and Shilpaa Anand

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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.

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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.

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“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.

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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.

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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.

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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.

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“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.

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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.

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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.

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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.

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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.

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