Not Before Me- a book raising questions in a quest to find answers on disability.

 Sixteen years ago, fresh out of the medical college, as an enthusiastic doctor, I visited the Bidada Medical Camp in Kutch Gujarat, as a volunteer. Amongst the thousands of patients I saw, this mother, aged between 65-70 years, stayed in my troubling thoughts for a long time. She had come to the camp to meet specialists who were visiting India to treat the ragged and frayed people of Kutch for free. 

I remember her as a mother of an adult specially abled child. The father had passed away a few years back. No siblings to follow. ‘What after me?’ was the thought that stung her day in and out as she cared for her son. She had come to the camp in the hope that somewhere there would be a place that would care for her son once the heavens had embraced her. The staff refused to help the mother because her plea did not fall into any surgical or medical category. 

Years later, as I read the book Not Before You, authored by Lata Gwalani, this mother knocked on my doors in Jaya’s disguise. She spoke to me with the fervor Jaya speaks with her family of four- Suraj, her husband, Divya, her daughter, and Rupa Rani, her mother. The fourth individual, Nikhil, the son suffering from Mixed Cerebral Palsy with Structural Scoliosis, doesn’t respond to her. He merely squeals, groans, or grunts loudly.

Storyline and underlying message:

As the story advances, we see that nobody except Jaya stands by Nikhil. His father leaves the house overwhelmed by the circumstances. Divya, his sister, has always stayed with her Nani, Rupa Rani as Jaya finds it difficult to manage two children single-handedly. The estranged sister grows bitter over the years and severs ties with her mother. Thus, Jaya left with no option, at the age of sixty, is seeking Euthanasia.

Her family members condemn her for the same. Deep within those reading this are shell-shocked! We have our assertions ready to lash back at Jaya. But do we know how deep her wound runs? Anxiety for her son’s future is Jaya’s permanent companion. Every waking moment, the thought that her son will spend hours groaning in pain before someone has mercy to feed him water stabs her. Mercy is what they will give him. Then why deny him mercy killing? 

 Aren’t we as a society being too hard with parents dealing with challenged children? Jaya’s family, who has shrugged the responsibility of caring for a son, reflects the society we live in. Not all but many of us would end up calling the mother heartless. ‘Which mother thinks of killing her son?’ is what our tongues would end up wagging about. Yes, which mother would? No mother unless she is helpless at the hands of destiny. 

Euthanasia, whether given to an ailing child or aging parent, is never easy. The guilt of terminating a life is enormous. But what options do these hapless individuals have? Do we have enough trained caregivers and institutions to look after the specially abled child? Are these centres working with enough empathy residing in their hearts? Sadly, very few organizations in India work for the challenged children. More than half of these bodies work in association with the parents. What after the parent passes away is the question.

Here, I raise a question. 

If a mother has the right to bring a child into this world, does she have the choice to willingly say a last farewell?

Well, this is going to spark a debate and fingers will be pointed to call me inhuman. I’m not in favor or against of euthanasia. I believe we should listen to mothers like Jaya without judging them. If we find the act horrifying, imagine what the mother is going through. With all the mutations and aberrations happening in our genes, evolution still can not produce a heartless mother. Dig deep. Look beyond the surface. You will definitely come across a gross reason anytime a mother must have killed her child. Direct your lens to the mother rather than focusing on the brutality of her actions.

In the past, we have read reports of mothers committing suicide after strangulating or poisoning her children. In such cases, the mother isn’t a failure. It is we as a society that has failed her. If such a mother has birthed a disabled (just once I’m using this word because I believe each one of us is able in some or the other and disability is never a general phenomenon) offspring, then it is we who have forced her to take this decision.

We haven’t given her a seat in the bus or train when we saw a grown-up child clinging to her as she balanced herself in the running vehicle. We haven’t taught our children to be friendly with her child when in school. Probably, we haven’t offered to babysit her child when she wanted to spend a few quiet moments on her own. We haven’t done a zillion things due to which mothers like Jaya decided to call it quits.

It is never easy to give up on something we have worked for years together. Do you think it is a cakewalk to trample your seed?

Characters that connect with the reader:

There are many handbooks for parents to deal with the diagnosis and prognosis of any disability. There are counselors waiting to help the distraught family members. NGOs and volunteers too are eager to lend a helping hand. But. There is a huge BUT that divides these professionals and the parents. On hearing of the diagnosis, many parents build walls around themselves. Coop up their challenged children for the fear of facing ridicule from the society. That’s when I believe fiction told with strong honesty and clarity comes to aid.

Not Before You urges you to look at individuals with disability in fresh light. It asks you to not repeat mistakes Jaya and Suraj have committed while struggling to accept their son. Mary, the caretaker, gives us hope that there are individuals beyond the parents who can share the load of responsibility. Rupa Rani, the maternal grandmother, is a symbol of how powerful mothers raise equally sturdy daughters. Divya, Jaya’s second child, is rebellious and scornful.

The characters of the book are your everyday people. The ones you meet at the market, see them jogging on the road, watch them pray, and scuttle about doing usual stuff. Just that there is also something unusual happening within them, with them. This book urges you to identify those unusual pains and empathize with them. 

My take-away from the book:

On a personal level, the book taught me to be grateful. While I am cribbing over grades and trophies, somewhere another parent is celebrating because their child has responded with a smile after years of trying. While I’m busy complaining about my son’s awful handwriting, a mother is overjoyed because her son held the pencil in his hand for a microsecond before it fell again. 

I have learned to rejoice in the smaller joys of my son’s childhood.

"This post is a part of “International Day of Persons with Disability” blog hop hosted by Sakshi Varma – Tripleamommy.

 #IDPD2024Bloghop. Access all posts of this bloghop at https://tripleamommy.com/2024/12/02/beyond-barriers-amplifying-voices-for-inclusion-marking-idpd-2024/.

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