Learning to Transgress Boundaries of Bodily Integrity

By Deepa Sonpal

The Seed

I was born as the first child of my parents in Mumbai. Within the first couple of days my parents were informed that I had some defect in my eyes. But the medical experts were not able to state the extent of limitations it would impose on my ability to lead a regular life. Being the first-born, I grew up as the most doted grandchild in my maternal family.  Around four years of age, after being examined by several ophthalmologists, spectacles were prescribed for the nystagmus and photophobia. At the age of five, I was admitted to a Catholic missionary school, Loreto Convent Asansol (LCA), in West Bengal. A very fine school where, unknowingly, I first experienced inclusion. It has been the loveliest experience of my life—where inclusion in its true sense was inculcated effortlessly and where the basis of my spiritual quest as to the purpose of human existence was founded.  On the first day itself, the principal of the school showed my father, when he had come to fetch me, that I was made to sit on the first bench with instructions to the class teacher that she should speak aloud whatever she wrote on the blackboard.

That was the beginning of a beautiful journey and without feeling alienated or ‘different,’ I passed the tenth standard ICSE exams. The teachers, nuns, and students were extremely supportive and I was included in all activities except sports, as I had photophobia. In between, I studied in Mumbai for a few years and did experience rejection from the same relatives who had doted on me in my early childhood as they did not want to take on additional responsibility.  I was also teased by the boys in the school in Mumbai, but these memories were washed away when I came back to LCA to complete my schooling. Studies were made so easy and the unassuming support extended by the students and teachers ensured that I never felt the ‘inability’ to do anything, be it taking part in the concert, annual day function, march past and drill during sports day, or conducting science experiments in the labs. In fact, I was first introduced to ‘disability,’ without of course understanding its meaning, at the celebration of the International Year of the Disabled Persons (IYDP) in 1981.

I experienced similar patterns of inclusion throughout my education—I completed my Bachelors from St Xavier’s College, Ahmedabad, and Masters from TISS (Mumbai) in Social Work with specialisation in Medical and Psychiatric Social Work. The foundation for the Social Work profession was laid at Loreto where the nuns insisted on promoting a culture of compassion. My spiritual foundation was also laid at LCA, where we were taught to refer to the heart for guidance, approach life courageously, and were advised to let the light in the heart shine to overcome all barriers in life.

The Quest

While studying, seeing discrimination and experiencing differences at various levels, including poverty and gender, set me thinking about the forces that determine the way a human being is born into a particular circumstance and is then condemned to lead a disgraceful life with few options to break the shackles of destiny. This quest led me to explore alternate systems of religion—spirituality. Reading Vivekananda and the sayings of the great saint Kabir revealed that a living guide or guru of calibre is the only way that could lead me on to the path of discovering this truth. It did not take long to find one, and then began the process of spiritual self-realisation or sadhana through meditation. Through this process I began to unlearn all that I had accumulated. I learnt that the life of the soul is a temporary feature in this bodily existence and that the human form is a result of several incarnations. The opportunity thus granted to a human being needs to be utilised for the elevation and emancipation of the soul that is eternal. For this, thought processes creating negative or derogatory images of oneself and the other or all significant others in one’s life need to be evaded through mind regulation, meditation, and sincere practice. Taking one’s thoughts away from the daily travails of life and reconnecting with the soul has been a fulfilling and enriching experience and each day, I look forward to taking time out to dive deep inside and forget the travails of the material world.  This has enabled me to break the chains of normative behaviour and expectations set by society and to redefine my own destiny in terms of what I want to be, where I want to go, and how I want to lead my life.

Experiencing and Resolving Differences

I was first hit by the stark difference caused by my restricted mobility when I began to work.  Feeling uncomfortable with the patronising and pitiful attitude towards disability among professionals, I chose to work with an NGO that had nothing to do with it. In the first couple of months itself my list of inabilities were communicated to me—not being able to travel alone, not being able to maintain eye contact, hence not being able to work independently and so on and so forth. This came like a jolt from the blue as throughout my education such indications were never given to me.  Being rebellious by nature and inspired by the spiritual practice I had begun to follow after completing my studies, I chose to create a niche for myself professionally by selecting roles that were undervalued and underpaid. At the same time, I realized that it was necessary to balance the material and spiritual aspects of life, like the two wings of a bird that chooses to soar high. I learnt that being constructively occupied, earning a living to sustain oneself without being dependent, and leading a dignified life are critical because true liberation is freedom from human bondage.

After a decade of work I was again confronted with working on disability that derived its insights from the social model—removing barriers in the environment through research, awareness, and advocacy. This work interests me and I am drawn to it.  Yet my ‘inability’ continues to be harped on—either consciously or unconsciously—and non-disabled colleagues continue to be given recognition for all that I am perhaps equally entitled to. Life, since I started working, has not been easy. I am constantly confronted with the daily struggles of completing household chores with limited mobility, attending to aging parents and expectations of siblings, increasing demands and subtleties of layers of anomalies at the workplace, advancing age and health problems, and the need to make time amidst all this for my spiritual practice.  It is a herculean task to strike a balance between one’s spiritual and material life. Inner strength and solace gained through the diligent practice of meditation enables rejecting, ignoring, and facing up bravely to a new day. The non-material benefits accrued convinces me that it is possible to transgress the notions of bodily integrity. I have now begun to cherish the ability to transform one’s own destiny by regulating the thought process and creating a realistic image of oneself and expectations from others.

[Deepa Sonpal works as Programme Coordinator in Unnati Organisation for Development Education, India. She is a woman with low vision. She has a Masters degree in Social Work from the Tata Institute of Social Sciences, Mumbai.]