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“Just as we are”- An interview

25 years has passed  since the American Disability Act popularly known as ADA was set into motion. 25th anniversary of ADA was celebrated by the United States as well as people around the world. It was celebrated in Nepal too. While one part of the world celebrates the joys of disability rights and the other part (Nepal) is still in its infancy of development. Let us look into the lives of people who have lived through these 25 years.

In the following article, I bring to you the story of Archana (Names of the interviewee has been changed to protect their rights to privacy) and her family

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‘We want people around us to realize that we are “normal“, we do not want to be stared at, as if we are untouchables or that we have committed some sin.’

This was what one of the parents of a child with disability told me during the process of my interview with them. I knew instantly that people here are proud, efficient and reasonably strong in many aspects. They do not expect much from the society. Despite the unimaginable challenges, they are bent upon fulfilling their responsibilities. All they ask for, from the society is a little respect and empathy  not even sympathy.

Ashok and Reeta are middle aged parents of three wonderful children. Their first child Archana has cerebral palsy. They are a typical Newari (one of the ethnical groups of Nepal) family with same kinds of rigorous cultural background as any typical Newari family in and around Kathmandu valley. Both are respected teachers by profession since two decades. Archana  is the eldest daughter and is twenty-six years old. This is a story of her and her families’ journey since her birth.

Looking back

Reeta: Archana is our first child. When she was  five months old, she was diagnosed with cerebral palsy. Till she was three , she was sleepy most of the day and would not even cry or show any interest in anything. Our doctor told us that she may never be like other children and only option for us was to visit a therapist. So I took unpaid leave from my work for a period of one year to “Teach ” her therapy. I visited as many as five different hospitals and centers for therapy. One after another, we had no improvement whatsoever. We did not have many  Nepali therapists back then, we had foreign volunteers coming to our house for  therapy. However it  was not helpful because she would be asleep throughout the therapy session. Whatever improvements she would make would be wiped clean once she was ill (she used to get ill every now and then when she was younger).

Till she was five, she was not even able to lift her head. So there was no chance that she was able to sit on her own. She used to love sitting. Though she needs to be held by two people, we used to make her sit. She used to enjoy being around people. But one day, we came to know through one of the foreign therapists that we could no longer make her sit. This was because she had dislocated her hip joint.  She started lying down most of the times and along with the dislocated hip, she also developed a bent back bone.  Until she was twelve years old, we falsely believed that she was blind. Within that time, we changed almost a dozen eye glasses in hopes that she would be able to see. Luckily, right now we know that she can see us.

Taking care of her was a big challenge. We had other two small children to take care as well. But it was different then, our parents were still with us. Archana’s grandparents would take care of her. It was a great help. It has been more than fifteen years since our parents passed away. Since then, we are on our own.

As of today

Ashok: It’s  been more than two decades now that we are taking care of her. We go to work, our younger children go to school or college and Archana stays home during the day time. I tried to arrange for a care taker once. As we pay for the service, we expected nothing less that their service in return. But with much disappointment I one day came to realize that the food I left for my daughter  was not given to her properly. Instead the care taker would feed  her own children and my child was left hungry. This made me realize a very important thing. Though we expect humanity and  service from people we hire to “Take care” of our child, all we get is “Routine job” from their side. We expected “Service” and we got “Job”. They would finish their “Job” and they would go. There was no human connection or empathy in them. So I stopped hiring help. We handles our situation on our own.

Right now, my daughter is good at staying home. We understand her better. She can communicate with us. We know when she is in pain, she can show us by taking her hands to where it pains. She can wave “bye-bye” and do “Namaste” (A form of greeting in Nepali), she can change her position herself from right to left side lying. She loves to listen to music, specially “Bhajan”(Spiritual songs). She enjoys them and claps to the tune of it and sometimes even hum along with it. She can put solid food into her mouth by herself. Not like any “Normal” child but in her own twisting way, arranging her hands and body to a comfortable position as she moves. It gets the job done, and that is more important for us.

Though these may seem trivial these are important milestones for us. These are small things which makes us feel happy. Only few years ago we were not even able to understand whether she could see us or not. Only few years ago she used to be very passive and unaware of her surroundings. Today we understand her better. This makes us hopeful and happy.

We still have many challenges ahead of us

Reeta: She is completely dependent on us for her basic daily activities like feeding her, toileting, placing her in different positions and carrying her from one place to another. Each of these tasks are equally difficult and challenging for us. Feeding her takes up much of our time. I do not understand why she cannot eat faster. I sometimes wonder whether its because she does not have teeth? I feel like crying when i think that something as innate as eating is so difficult a ask to accomplish. As a Reeta, I have many other domestic work at home, so my husband helps me out by feeding her. He is the one with much patience than me. Moreover, he knows the techniques on how to feed her.

Ashok: Yes, she requires much patience. I understand that my wife has so many other works to do at home. And Archana takes more than an hour to eat a simple meal. So I take up the responsibility. I have to keep reminding her that she needs to swallow or else, she ends up keeping the food in her mouth forever. The food needs to be just perfect. She cannot chew  solid food. We give her semi solid food. We also have additional problems like mouth ulcers every 6 months or so and those are times when it becomes even more difficult to feed her. Toileting and Cleaning her up is another challenge for us. Since she cannot sit on her own, it becomes very difficult to clean her up or even make her do potty. Constipation and menstruation are another issue altogether. Because we are growing older day by day, it is becoming more difficult for us to lift her up or do all these daily necessary activities for her and on top of that, a dislocated hip; deformed feet makes it all the more difficult and painful for her as well.

Socially we feel that we cannot freely participate in any social events. We live in Kathmandu and as everyone knows we have at least one festival or event every month. We have to visit our relatives. We feel that we cannot freely participate in these  social activities. Before we go out we have to feed our daughter. We cannot take her out. Firstly because we cannot carry her up and down the stairs and secondly she can’t eat anything that will be offered.

Lastly our  most dreaded challenge is “Time”. We are getting older day by day. We wonder what will happen to our daughter if one day we cease to live. That is our biggest fear.

Our humble request to the general public and others who are related to us in any ways is that we do not want anything other than some respect. We want everyone to treat us as we are “Normal” people. We want people around us to “think” that we are “normal”, we do not want to be stared at, as if we are untouchables or that we have committed some sin.”

This interview is mainly focused on one such family with different challenges in their lives rather than our normal day to day challenges. The main reason behind publishing this interview was to make the society understand these difficulties in a close and personal way. Hopefully this article serves its purpose.

 

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