“Dear Mom, Now it’s My Turn!”: A Personal Account
By Sameer Chaturvedi
I am a person living with cerebral palsy. My mom is my primary caregiver. She looks after all my needs. Even when I study, only rarely does she forget to keep a full bottle of water on my computer table. I am used to her presence around me. Love you Mom, there are times when I feel helpless without you.
I have a twin brother and an elder sister. Both are non-disabled. We are of similar ages. My mother has been a caregiver to all of us. In fact, my father is dependent on my mother for his needs. But if I talk about my dependence on my mother, society will mark me out as “disabled’, as someone who is, by definition, dependent. It needs to be challenged. Caregiving as an activity is liberating; it makes us more human.
Mom as a Fighter
Since my childhood, she has helped me in getting ready for the day, besides managing all the household chores. I remember in my school in Lucknow, there was a teacher who used to beat me out of habit. It was something he was used to doing, and it was probably his favorite pastime. One day my mom saw red marks on my back and decided to have a word with him. The man was so damn scary. I remember she gave him a good piece of her mind. I remember my mom on many occasions sent me to school a bit late as she had to prepare breakfast or lunch. I remember one day she carried me in her arms in the hope of reaching school on time for the morning assembly. This gave the teacher a chance to tell my mother that I was getting beaten for my indiscipline. My mom carefully ignored this because as humans we don’t really want to hear shortcomings of our loved ones.
Keeping Me Clean
I remember till the age of 12 or 13, my mother used to help my brother as well as me to bathe. That gradually changed. Once a week, preferably on Sundays, my mother used to help us in bathing with soap. But a time came when my brother managed to assert his need to bathe independently. His demand was conceded but I was not allowed to do the same, despite my eagerness. I tried challenging what I felt was mom’s authoritarian behavior but got a bit of a scolding and was shouted down. She insisted that I would not be capable of cleaning all my body parts, such as my armpit, if I bathed on my own. This continued for a long time. I did succeed in asserting my need for independence later; now she enters the bathroom to help me to take bath only once or twice a month. Now that she is aging, she lets me bathe myself. In recent times, she has also instructed me to reach for my armpit and clean myself properly as that would improve the functionality of my right hand. She in her own way is helping me to get independent.
There is this other side of the story as well, where my mother never stopped me from doing things independently but, yes, she remained concerned for my well-being. She always maintained that I should do things which my siblings were doing. When I was a child, whenever my brother went to meet his friends, she made sure that I went along with him. Maybe she wanted me to get similar kind of exposure to outdoor activities as my brother was getting. She made me go to school alone as well. Probably she knew that I could manage alone. Most of my schools were walking distance from home. Seeing me walking, the people from a locality were a bit concerned about how my parents could let me go alone. But my parents knew that it would help to increase my confidence.
I had a rough patch in my life around the teenage years, when my health was not in great shape. It impacted my studies, which made me not only change schools, the medium of instruction and the board, but also cities. But my parents kept motivating me. My mom supported me a lot even when I misbehaved. She is my support.
Her Concern and my Desire
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.
Responsibility towards the Body and Family
My disability is neurological in nature. I need to take care of my bodily requirements to improve as well as to maintain my condition. During childhood, I did not want to wear calipers as it caused a lot of pain and I neglected the exercises I was supposed to do as well as the physiotherapy sessions. I somewhat regret that but it is a long life and we all commit a few mistakes.
Now there is some bodily discomfort which I encounter, that has made me regular with my exercises. In fact, for some time, I have taken control of decisions regarding my medical needs. I want to become more independent because I also want to be responsible towards my family; I want to take care of them. I want to prepare myself for the future. I want to be an efficient partner.
Construction of Disability as Diversity and Caregiving
I concede that disability is a kind of diversity that human beings possess. It can, however, be construed as a medical condition alone. I see that there is a need to detach stigma from the condition as no one is beyond requiring medical attention at one or other point in their life. At this stage of my life I am a caregiver to my friends who seek suggestions from me for their problems. I have great concern for people I’m attached to and even for those who are just mere acquaintances. There is someone, a significant other in my life right now, a friend, philosopher, and guide; she is everything. We share mutual respect. We both provide emotional support that for me is the basis for caregiving to each other. I pray every day for her well-being.
Another crucial point which I want to raise here is that I should not be deprived of the right to choose my ‘partner’ just because I am disabled. Relationships must not be judged on the basis of bodily appearances but it is the connection of two souls. And any relationship is based upon interdependence.
We need to get rid of the idea of a perfect body when discussing any relationship. Biological structure does not provide the strength to any bond but it is an understanding between two people. In fact, we can make a violence-free society based on the concept of care.
For me the root of the concept of ‘care’ is love and respect for dignity that could make the relationship between the caregiver and care receiver a blissful experience.
Sameer Chaturvedi has completed his post graduation in Sociology from Delhi School of Economics, New Delhi, and an M.Phil. dissertation in Sociology at the School of Social Sciences, Jawaharlal Nehru University, New Delhi. He is presently a Ph.D. Research Scholar in Jawaharlal Nehru University, New Delhi.
For more stories, read Café Dissensus Everyday, the blog of Café Dissensus Magazine.