Story of untold suffering and determination: a case of Jhamak

Paper presented at The First International Conference 

of HK Semiosis Research Center, Hankuk University of Foreign Studies, Seoul, Korea

on Homo Sensus: Perception, Emotion and Semiosis (June 8 – June 9, 2012 )

Abstract
This is the story of Jhamak Ghimire, a girl who was born disabled three decades ago. She could not move her limbs, both  hands and feet, she could not speak either. It was in a poor family of eastern Nepal that lived in a village full of superstition, that did not consider   girl child and women as human beings. Jhamak’s story of suffering and struggle for freeing herself from the status of an animal is very vividly recorded in her autobiography A Flower in the midst of thorns.  This presentation is a brief account of how a child suffering from cerebral palsy by birth managed to fight to free herself from   a state of sheer ignorance and hatred and could attract the attention of the world through literature, how she learned to read and write and what message she has given to parents, educators, society, medical practitioners of world. Jhamak’s  autobiography reveals the story of her struggle so poignantly and so boldly that one is shocked to read. 

I will refer to her Jeevan Kada Ki Phool (Nepali),  her great autobiographical work rendered into English as  A Flower: in the midst of thorns. As I had an opportunity to work with the Nepali and English versions both, I would like to quote some instances of her struggle and lasting achievements  from this work.

Cerebral palsy 

Medical dictionaries define Cerebral palsy as  a group of disorders that can involve brain and nervous system functions such as movement, learning, hearing, seeing, and thinking. There are several different types of cerebral palsy, including spastic, dyskinetic, ataxic, hypotonic, and mixed. Cerebral palsy is caused by injuries or abnormalities of the brain. Most of these problems occur as the baby grows in the womb, but they can happen at any time during the first 2 years of life, while the baby's brain is still developing.

 Jhamak had cerebral palsy at birth, yet it was not  diagnosed  until a few years ago.  This handicapped her severely, and she underwent untold suffering in her childhood, though the ignorant  parents tried to cure her with the help of witch doctors and shamans and palmists or astrologers.  Failing to cure her,  they abandoned hopes and some even wished her death. They believed that as she had sinned in her previous life, she is being punished by  fate.  This is her Karma or destiny that she should undergo.

Great personalities with cerebral palsy

Some famous people in history have suffered from cerebral palsy. For instance, Helen Keller (1880- 1968),   world renowned British scientist Stephen Hawking (1942),   Irish painter, author, poet Christy Brown (1932 -1981)), Irish author Christopher Nolan, American comedian Geri Jewel (1956), Australian author  Anne McDonald  (1961 - 2010), Australian Comedian Steady Eddie, etc.  Many of them were able to overcome their disabilities because of the love and support of their families. Helen Keller’s family refused to give up on her and hired a private tutor to teach her. Through the inspiration of one motivated person, Anne Sullivan,  Keller learned to communicate, though she was blind and deaf. Christy Brown's  mother taught him the alphabet and he eventually became a great writer and poet. Stephen Hawking  has attracted the attention of great specialists,  Christ  Nolan has never spoken or signed a word in his life, they attached a device to his forehead and he learned to type and  his poetry has been compared to that of Joyce, Keats, and Yeats. 

Jhamak Ghimire is the only  creative person  from Asia to have been suffered from cerebral palsy, to have attracted the attention of the  world, who showed indomitable courage to prove that disability is merely a superstition. Despite all odds, she gave a  perennial message that life is a Flower, though amidst thorns. Evaluating her contribution, people have  compared her fruitful  life with that of Helen Keller or Stephen Hawking. 

Jhamak suffered a horrible fate 

But  Jhamak had to learn reading and writing entirely on her own, and words fail to describe  the story of the ordeal and suffering she underwent while learning them.  From her childhood, she was treated as a non-entity. Her family and other people called her “serpent” because she crawled on the ground. Everyone who saw her pitied her, because she was no more than a vegetable that ate what was provided to her by her family, and did nothing else. People just wished for her death, because that might be easier for her than to live. But all the time, Jhamak hated these outpourings of pity, and longed to reach out to the world. The determination to make her way out of her shell of silence grew every day. Life was a curse in hell.

Struggling with  the letters of alphabets 

The most important event in her life is her incessant love for words and her struggle to learn them. She learnt words simply by hearing other people speak, and only after reading her accounts do we realize that it is so  hard to learn when you are just listening and not speaking:

My younger sister used to pronounce vowel sounds with father, but I had no voice to utter those letters, although I had powers of hearing. As a result, I would silently and inwardly try to pronounce what I had heard and repeat them twice, thrice or more. He used to hold my younger sister’s hand and teach her how to write those letters, that is s (ka), v (kha), u (ga), etc. On my part, I would collect the dew drops falling from the eaves of the roof in a crucible, crawl up to a little distance, dip my toes in that crucible and, with the dew, attempt to scribble some letters at random on a nearby rock stone. When there was no dew collected, I used to break little bamboo twig, make a ‘pencil’ out of that and try to scrawl letters, using the flat earth as my ‘exercise book’. As I would scrawl with dew-dipped foot-finger (toe) on a rock, the force of scrubbing would peel off my soft skin many times without number. But, nothing ever deterred me from learning . Whether my toes be bleeding or I mastered writing or not was immaterial to me. 

 These are tremendously powerful lines, because they shed light on the plight of Jhamak, and all other people in her situation. It is the only way that we can hear her viewpoints, and feel her struggle. That is the only way that we realize there is a problem in how we treat disabled people in our family first then in community, and that is the only way that we can start solving it.

Jhamak saw her siblings going to school, but no one gave a single thought to her education. She was desperate to communicate with the world, but had neither speech, nor gestures, nor words, to do so. She realized that her sister’s schoolbooks could be the key to her escape from her lonely world. Through her own effort and determination, she sneaked looks into her sister’s books, and the way her father taught her sister Mina, she  learnt to write the first letter secretly, on her own without being noticed by others, writing them on the ground or dusty floor, sometimes with the help of charcoal when they were away. Thrilled with achievement, she wrote the first letter down on the mud, and waited for her family to recognize her achievement. Instead, no one even realized that she had written a letter on the ground, and life went on as usual for them. Her triumph was in vain, known only to her.

She remembers that hour today:

I remember now that at the time I first learnt to write the letters of the alphabet, I could not share the joy with anyone. I had, nevertheless, mastered the art of scrawling letters even if it was on the bare earth and had learnt to pronounce them although only within my mind. The first day I had been able to scribble the first letter of the consonant s (Ka), I had sprayed a cloud of dust in the air out of sheer happiness because I had broken innumerable twigs time and again in order to learn writing this letter and I bruised the tender skin rubbing against the soil. Moreover, my toes bled when I practiced  writing by dipping them on the dew drops collected on the bowl.

Exploring the power of words

After much struggle, Jhamak was finally able to convince her family that she had started writing. Even then, nobody saw any point in her education, and she had to beg and plead to get a single notebook to write on. Inspired only by her strong  determination, Jhamak continued to struggle until she began writing coherently with the help of the toes of left foot, and started sending out her creations to local newspapers. She  thus explored the power of words and connected herself with a world of power made up of  knowledge and information.  Now she could communicate with the world. This lit a lamp and began to illuminate her rebellious heart.

In a matter of some 15 years of wiring and reading  and self practice all alone she produced 11 books namely,

• Sankalpa (Resolution—An anthology of poems) 1998

• Aaphnai Chita Agnishikhatira (My Burning Pyre—An anthology of poems) 2000

• Manchhebhitraka Yoddhaharu (Hidden Fighters Within Man—An anthology of poems) 2000

• Awasaanpachhiko Aagaman (Arrival after Death—Miscellaneous collection) 2000

• Samjhanaka Bachhitaharu (Sprinklings of My Reminiscence—Collection of articles) 2000

• Naulo Pratibimba (Nobel Images—An anthology of poems) 

• Parda Samaya Ra Manchheharu (Curtain, Time and Man—An anthology of short Stories) 2005

• Bemausamka Aasthaharu (Untimely Beliefs—An anthology of essays) 2007

• Jhamak Ghimireka Kavitaharu (Jhamak Ghimire’s Poems—An anthology of poems) 

• Jiwan Kaanda Ki Phool (A Flower in the midst of thorns—An autobiography in prose) 2010

• Raat Ra Bhootpretaharuko Santras (Ghosts and Nightly Terror—An anthology of articles) 2010

Her autobiographical work A Flower in the midst of thorns is her magnum opus. It took her  4 years to complete and the book came in 2010.  She has decided to come out with the story of her life in her autobiography after a long struggle, because she had to fight the family and society and the tyrannical rulers and a most difficult time of war, conflict and insurgency  in Nepali history.

Her ignored life, a state of sheer helplessness and the amount of struggle she required to   uplift herself was tremendous. This made her an uncompromising rebel against the social norms and values. These experiences developed in her  a different perspective on the world, she could see things from a clearer perspective because she was under no obligation to approve the status-quo like everyone else.

Her Autobiography opens many doors of ignorance 

The area of disability and romance has not been studied very deeply in any culture, maybe because there are few disabled people who are willing to write about those aspects. We  find that society does not holds disability and romance in a very positive light. Disabled people are viewed with pity and sympathy, and the idea of them having romantic lives horrifies or amuses many of us. One of the most touching scenes in the book is when Jhamak describes how her clothes would wear out soon because of her crawling, leaving her body exposed. Construction workers from neighboring house would hit her with balls of mud or stone, aiming at her exposed genitals. She recounts their talk during these moments: they comment that though she may be beautiful in her youth, no one is going to marry her, or like her, and it is sure that such a one as she can never have any romantic feelings.

Jhamak has gone ahead and spoken about her romantic feelings in her autobiography. She describes that she finds herself pretty when she looks at the mirror. She has remarked elsewhere that she would love to get married and have children, even though she acknowledges that it may not be possible. This is a very brave step, because by admitting these feelings, Jhamak has opened herself up to ridicule, derision, and more pity from the society. But once society has had its say, Jhamak’s admission has opened up far more significant avenues. Not many people know that Helen Keller, a person who was deaf and blind as well, had once been in love. She was prepared to run away with her lover, but her family was horrified at the idea of a person like her falling in love, and stopped the proceedings immediately. Today Helen Keller is renowned for her positive thoughts and inspirational personality, but after the failure of her romantic attempt, she had battled depression for a long time. Her romantic feelings are not well known, even in the most of her biographies, because, as we have already discussed before, society gives no place to romance of disabled people. We can only imagine the frustration that she and other disabled people have to face when they are not even allowed to express their romantic feelings and hopes, wish that they had a loving future, let alone fulfill any of these wishes. Acknowledgement of the problem is the first step towards its solution, and Jhamak, by her admission, has acknowledged that society has a problem. The problem is our view of disabled people as being asexual, and it can be addressed when more and more people open up and start looking for solutions. 

This calls for a change of our attitude towards the disabled people.

She lays everything bare

Jhamak has braved the ridicule and derision of society in many other ways that apply not just to disabled people but to ordinary human beings equally. She lays the most humiliating parts of her life bare for the reader to feel. She mentions how difficult it is for her to perform her bodily functions, and how she often had no option but to wear soiled clothes for days. Many of us have undergone humiliating incidents in our childhood and adulthood, and most will go through them in our old age. But most of us will never have the courage to write about such humiliating moments in our lives in public. Only by discussing our issues can we get to the solution, most of us find it hard to be as honest as Jhamak has been. Through her honesty, Jhamak has set a standard for all writers, and encouraged everyone to share their problems. 

Raises voices for freeing women from bondages

Though Jhamak claims that she does not write under any “isms”, her work itself touches upon many of the current isms prevalent in society. The most prominent of them is feminism. Jhamak expresses strongly feminist viewpoints at turn, with which every woman can identify. She mentions how everyone treated her worse just because she was a woman. She mentions how terrified she was at her menstruation, and how she blanched at being confined indoors during her periods (in Nepal, it is normal to confine women in a single room during their menstruation). 

She brings up many other issues that Nepali women face, through her own life and that of the women surrounding her. She expounds on the value of work, and she concludes that every person, especially a woman, must earn her own living so that she is not a burden to anyone else. Jhamak has managed to take care of herself and earn for herself through her writing, and in doing so, has proved to be an inspiration for other disabled people as well. In fact she is the  beacon  of hope for all the disabled people of the world.

Jhamak gains a deep knowledge of many other human mysteries. When news got around that a disabled girl had learnt to read and write, people started worshipping her as the goddess Saraswati, Hindu deity of knowledge. Jhamak realizes that this is how religions are made. Gods must have been human once, and they were probably idolized for their extraordinary talents, she muses. As a child she had heard many stories of wishes being fulfilled by gods. She describes being influenced by the story of Dhruva and Prahlad, two children who were great devotees of Lord Vishnu, and were rewarded with a lot of affection from the gods. When her own wishes did not come true, she became disenchanted of the gods. 

Her wishes came true 

But in her own way, Jhamak’s wishes came true. Though humiliated by the society at the beginning, she is now lauded by people far and wide, all over the nation, for her talent and determination. Her salvation came not through gods, but through her own efforts, and once again, it instills hopes in all of us to trust ourselves instead of putting vain hopes on unknown supernatural forces.

Despite her hard life and disenchantment with the values of popular society, what stands out in the end is Jhamak’s fervent belief in the beauty of life, her desperate struggles to read, write, and be heard, which eventually succeeded because of her determination. She learnt to read just by seeing her sister read, and she practiced either on the open ground, or on the discarded notebooks of Mina. For every bitter word that she addresses at a person, she does not forget to add a warm word to make them human. Her father, her mother, her grandmother, she finds them all guilty of neglecting and abusing her, to the point of beating her up with sticks, but she also does not fail to mention their kindness to her, their moments of love that drew tears from her eyes, and that makes them human in our eyes. In the end, what stands out is that Jhamak, despite her life being riddles with problems, still dares to call it a flower, and not a thorn, because in whatever form it is, life gives joy, and it is beautiful. Jhamak has done what many of her senior writers have  struggled for ages: she has been brutally honest without caring for the conventions of the society.  This disarming honesty will be the standard that all writers will have to live up to in the future, because only with such honesty can we connect to each other and share our problems, and only then does writing fulfill its potential.

My sincere appeal

At this moment I would like to appeal before the humane  world, especially before the Korean scholars, intellectuals and authors, cordially: Let us join hands in introducing  this Asian genius  to the world, in promoting her literary career, in making people aware of the differently able people , in their respect, honor and humanitarian treatment upon them. 

Let us do this by translating this book into our respective languages  and promote a noble cause and let the world know how letters can free a man from  a most abominable state

We can revisit our attitude towards the disable, we can revise our concept of education. We can rethink  the status of girl child and women, we can help establish an open society, free from superstition and tyranny.

Thank you very much.

***
Comment: 

1^st international conference by Semiosis Research Center 09/06/2012

Review of Prof. Govinda Raj Bhattarai's paper 'Story of untold suffering and determination: a case of Jhamak'

KIM, Woo Jo(HUFS)

This paper, 'Story of untold suffering and determination: a case of Jhamak' presented by Prof. Govinda Raj Bhattarai is based on textual analysis of Jhamak's autobiography, Jeevan Kada Ki Phool (in Nepalese) A Flower- amidst the thorns (the title of English translation) and if translated literally it means Life is a thorn or a Flower. The story was awarded last year the Madan Puraskar regarded as the most prestigious literary award of Nepal. The narrative is considered as remarkable for its treatment of the process of transformation from a 'non-entity' to somebody by acquiring the position of a human being in the role of disabled woman who is able to accomplish through her writings. It was though no less an achievement as the protagonist could make it possible writing only with the help of her toe of one foot, which is otherwise would assume a metaphorical value of a 'serpent' in a typical prevalent feudal milieu of an ordinary traditional Nepal village.

First of all I would like to express my appreciation of Prof. Bhattarai for his presenting to us such a significant literary work by a great Nepalese writer. The author under consideration has acquired great respect and admiration in Nepal and elsewhere as a courageous human persona who has been able to overcome all kinds of hardships she had to face including her unfortunate disability. I assume Prof. Bhattrai is justified in considering her disability-induced hardship even surpassing that of the legendary Helen Keller since the legacy she has left in an archetypical context of Nepal is even more courageous and praiseworthy. She is no doubt able to establish a survival instinct through her untiring struggle with her own strength and no help forthcoming in the context.

The autobiography can indeed be regarded as the one representing an extremely marginalized section of a poor South Asian community which emerges as iconic of a representative fictional reality through sign construction reflecting the society at large., I hope I would be justified if I direct some pertinent questions to Prof. Bhattarai in relation to the Nepalese literature in general and Jhamak Ghimire in particular.

1. How far Prof Bhattarai, do you think, you are justified in having emphasized that one of the main factors to transform a doubly despised and disabled woman that Jhamak happens to be as to assume the status of a real human being in the society through her sheer strength of determination which has enabled her life to connect and communicate with the society at large rather than the usually expected recluse from the harsh society. Are there some specific factors that have eventually shaped her strong determination? I wonder if the Hindu mythological story of Dhruva and Prahlad mentioned in the paper could have contributed to the creation of the protagonist that young Jhamak emerges to be.

• Her intense aspiration to carve a niche in order to be recognized as a real human being in the society, in my opinion, can be traced in her expression of desire for love even though Jhamal is a socially despised and disabled woman, which can rarely be seen in the previous literary works. It is in this perspective that Prof. Bhattrai is justified in his criticism of the social atmosphere of a parochial bias of showing no space for recognition of the love expressed by disabled persons and his argument why such an archetypal attitude needs to be changed after a thorough reading of this intense fictional autobiography. As such, an autobiography like this, authored by a socially-culturally marginalized person as Jhamak can be considered as a sign to subsume persons belonging to other sections of the society. What do you think, Prof. Bhattrai?

• As you have mentioned about other biographies in your paper, but, for obvious constraints, have confined it to only the autobiography under discussion, I would like to know whether there is a literary tradition of writing autobiographies in the modern Nepalese literature and, if so, how would this autobiography be considered in that context.

• Prof. Bhattarai: you seem to have put a great deal of emphasis on the honesty of Jhamak which is esteemed as a compulsory merit in the autobiography. Autobiography is, by nature, subjective and based on recollection of some facts and incidents, so don't you think a question of distortion can be raised because of the inability or unwillingness of the author to accurately recall memories which could otherwise tell us the formal characteristics of this biography so as to provide with the basis of objectivity and universality which is expected when an author of an autobiography seeks to communicate with readers? Is there any distinctive usage of language in this case?

• Prof. Bhattarai: it can also be considered that the author is optimistic, which one can assume from the title of her autobiography and thus tend to regard it as basically a feminist work owing to an emphasis on her evident revolt against the usual oppressive customs built against women and her consistent support for the economic independence.. And, looking at Saraswati, the Hindu goddess of wisdom and learning, is it not that Jhamak comes to realize only after her success? If this can be construed as realization of religious awakening, I would like to ask one more question: Is there any of her attempts to reinterpret mythological stories, which could or could not have been formed under certain patriarchal system, for the intended fulfillment of a need of feminism in Nepal?