And other mind-bending stories
This week is special. I don’t have a personal preamble this week, but let me just say that I am yet to be more humbled, heartbroken, mind-blown, and inspired in any week of writing this newsletter so far.
It is not news that you are disadvantaged in India (and indeed the world) if you are a woman.
It is also not news that you are disadvantaged if you are physically disabled / differently-abled.
Now imagine the life of the average differently-abled woman: She has poorer access to education and employment than the average differently-abled man and faces far more gender-based violence and abuse than the average able-bodied woman.
In this piece, I explore only some of these issues, for only some of the disabilities out there. In the process, however, I had the privilege of meeting some incredible women.
“If she cooks, we will only get fed tomorrow”
Neeti was a studious teenager who always topped her class and wanted nothing more than to become an engineer when she grew up.
One day, Neeti suddenly felt an acute body ache. By evening she was running a high fever. By the next morning, she couldn’t move her hands. And by mid-day, she had a paralytic attack that rendered her quadriplegic.
“Within a day, I was transformed from a ‘normal’ girl to a log lying on the bed, paralyzed from neck down, unable to move. No one saw it coming and there was no way we could have prevented it.”
The doctors told her parents that Neeti had a rare condition and that she would likely succumb to respiratory failure within the next few days.
“Three months passed. The doctors were shocked that I was still alive. They told my parents to consider this a blessing and make their peace with the fact that I would never be able to move again.”
It was a life sentence – one that Neeti‘s parents refused to accept. They brought her home and made it their life’s mission to get her moving again. She was keen to resume her studies back at her old school.
“The school did not have a ramp for my wheelchair. So, my father would literally carry me to and from school in his arms. The long hours of sitting took a toll but he would come back home and work even harder with me on my physiotherapy and exercises to make up for it. I had always been a class topper and that meant something to me. My parents’ support helped me top my class even in that most difficult year.”
With time and her parents’ unwavering love and dedication, Neeti recovered full range of motion in her entire body, except her hands – one of which she can move partially today and the other she cannot move at all. She went on to fulfill her dream of becoming an IIT engineer and runs her own company in Bangalore today. By any stretch of imagination, Neeti has had an incredible journey.
And yet, being a woman catches up to a woman, even one as inspiring as Neeti.
“After IIT, I wanted to stay single. But my parents were keen that I should ‘settle down’. I was scared of cruel comments during the matchmaking process. Close relatives sent alliances that included a 10th pass unemployed alcoholic, a divorcee, a widower, and a man 10 years older than me. It was what the world thought a disabled girl will have to settle for, if she wanted a husband.”
But Neeti had met Jeevan at IIT and they had become close friends.
“Soon, he popped the question. I tried to ward him off because I didn’t think he realized what marrying me would entail. But he held his ground. He met my parents and promised them he would take care of me forever. And he has stuck to his word in all the years since.”
While Jeevan has been a truly loving and supportive partner to Neeti, not everyone in his family was as open-minded. Jeevan’s Aunt – who lived with the family – was nice to Neeti in public, but made cruel comments in private.
“Because I can use only one hand, and that too partially, I do everyday things differently. For example, I don’t load the cooker first and put it on the stove because it becomes too heavy for me to lift. I put the empty cooker on the stove and then load ingredients into it. If something spilt in the process, this Aunt would snatch the cooker from me and pass a snide comment to the maid, ‘If she does it, we will have to do double the work.’ If I offered to cook a meal myself, she would say, ‘Then we will only get fed tomorrow’. Other family members did not join in the jibes but told me that I had to accept this because she was frustrated with my disability.”
And then, there was motherhood. Doctors had warned Neeti that a pregnancy might be a risk to her life.
“Jeevan was absolutely okay with us not having kids. But I had a strong notion that being a mother was an essential part of being a ‘normal’ woman. I would not budge and, after a very difficult pregnancy, we had a son.”
However, the Aunt took it upon herself to show Neeti that she could never be a ‘normal’ mother.
“She said, ‘We will raise him as our own kid because you can’t do anything’. Whenever I would try to manage the baby with one hand, she would come and take him from my arms. Nothing hurts a mother more.”
When she resumed work, Neeti would pick up her son from a daycare in the evening and bring him home.
“Everyday, after I brought him home, I was expected to do all chores while the rest of the family played with the baby. When friends and family visited, I would be asked to cover up my hands to hide my disability. When I started writing and talking about my struggles, I was told, ‘It is something shameful – not something great to be proud of’. I would be reminded at every opportunity that my husband did a favour to me and my parents got rid of their ‘problem’ by marrying me off to him. All of this wounded my self-respect.”
“Bottom line – disability or not – in a society like ours, a woman compromises a lot more, and still gets judged for being arrogant and stubborn if she wants to follow her dreams. Empathy is thrown out of the window.”
The Mother who has 3500 children
Meera Badve has worked with visually challenged youth and children for over 25 years now. She started the Niwant Andh Mukta Vikasalaya in Pune where she teaches blind students who are asked to leave Blind School after the age of 18 and practically left to fend for themselves on the streets without the means to secure higher education or employment.
“There is often no family support as many of them are either orphans or disowned by their own families because of their disability. They graduate from school but are usually directionless and unaware of their rights as human beings.”
I asked Meera ji if she has observed a difference in the experience of a blind girl vs a boy.
“In the sighted world, right from childhood, girls are conditioned to believe that you are born to sacrifice. It is the same even in the visually challenged world – at least when I first meet many of my girls.”
Meera ji‘s daughter, Uma, who supports Niwant with technological solutions, added:
“To promote our text-to-speech app (Swalekhan), I visited a number of blind schools. I noticed that many girls schools have a special kitchen for the students to learn cooking. But there is no such thing in the boys’ schools. I wanted to make sure that the boys at Niwant know that they also need to learn to cook. So I kept a culinary contest for our students. The boys did a decent job here, but still can cook only basic things like tea, rice, etc. In almost all blind schools, such ‘home sciencey’ subjects are reserved only for the girls, and they are expected to be able to cook full meals for a family.”
Last week, I wrote about judgments new mothers face during breastfeeding. Such biases, judgments, and comments are all the more common and all the more cruel when it comes to differently-abled women.
Sunaina, one of Niwant’s seniormost students, is a mother of a five-year-old girl. Both Sunaina and her husband cannot see.
“When I was pregnant, people would ask me, ‘You and your husband are both blind. How will you feed your child? How will you raise this child?’ When my daughter was born, my mother became a huge source of support. For the first three years, my daughter stayed with my mother, and I used to spend a lot of time at her place, learning how to manage the baby. My husband was not involved in childcare for these three years at all.”
And now that the baby was in her grandmother’s care, the world raised objections from the opposite side.
“People started telling me ‘How will your child learn about living with parents who cannot see if you don’t allow her to live with you and your husband?’ I also had trouble breastfeeding, and whenever people would see me bottle-feed my daughter, they would say that I was depriving my child of my breastmilk and it will lead to stunted development of her brain.”
Sudha, another Niwant student, talked about how the (lack of) ladies’ toilets in our country – which is bad enough for able-bodied women – becomes much worse for girls who cannot see.
“Even for sighted women, to use a public toilet in India is bad – it is dirty and smelly and slippery and disgusting. Now, imagine if you cannot see. You have to find your way inside a really dirty toilet, by touching all the surfaces, finding the stalls, figuring out how the door closes, where to sit, etc. If you are on your period, you have to find where to dispose off menstrual waste – if at all such a facility exists!”
There are also differences among men and women when it comes to personal grooming. Uma says that it is common to find blind men who don’t look very presentable – uncombed, unshaven, torn clothes – which is understandable because they cannot see themselves.
“But I have never seen a blind girl with a single hair out of place. Their clothes are always presentable. Dupattas are neatly pinned to their salwar kameez. Even when they are from similar financial strata as the men wearing torn clothes, you would never find a single hole in a piece of clothing the women wear.”
Sunaina explains the reason behind this.
“One reason is that we take pride in how we look. Personal hygiene is very important to most blind girls. But there is another reason as well. Though we cannot see ourselves, we know that other men can. We travel by buses, where we come across all sorts of men. They notice that we cannot see them and use the opportunity to stand too close to us, or inappropriately touch and grope us. It is necessary for us to be extremely conscious of our clothing and grooming, in an effort to avoid unwanted attention.”
It is a well-documented fact that sexual harassment and gender-based violence are much more common among women living with disabilities. Sunaina shared the story of one of her classmates in Blind School.
“Her family worked as farmers in a village. She used to go to the fields and work as well. One day, some men attacked her in the field when no one else was around, and raped her. She realized that these men were her own relatives. She kept quiet because she was afraid her parents would discontinue her education if she said anything. But then, the men, taking advantage of her blindness, kept coming back to rape her whenever she was working alone. She could not take it anymore and told her family. Sure enough, her parents made her drop out of school ‘for her own safety’ even though the attacks were happening from within their own family.”
Since its inception, Niwant has helped over 3500 blind children through education. The organization is proof that – given the access to quality education – blind girls and boys can excel in life as much as sighted students, if not more.
Meera ji is a torchbearer on the path that our country needs to follow.
“I am a mother of 3500 children. My children are working as bankers, legal advisors, software developers, teachers, counselors, even CEOs of companies. They are national level chess players, cricket players, and dancers. They even give back to the same world that paved their way with difficulties – they donate a part of their earnings to funds for children living with autism, schizophrenia, and cancer.”
“Many of my daughters came from poor farming families. Today, they earn Rs 60,000-70,000 a month. Their families can no longer treat them like a burden. Instead, they have become assets that the families want to hold close. Many have fallen in love and chosen their own partners. And yes, they hire a cook instead of cooking for the husband!”
A life without language
Can you imagine your life without language? How would you feel if you were walking around with thoughts and ideas in your mind, but no way to communicate them to anyone in the world?
Welcome to the life of the average deaf person in India.
Charu Narang coaches deaf youth on employability skills at Centum-GRO and is hearing-impaired herself. After talking to Charu, I realized that the biggest problem with being deaf is not that you cannot hear sounds. It is that you need a language that most people around you will not bother to learn and your families and schools might not even bother to teach you.
“When a child is born deaf, for the first several years of their life, they have access to no language to communicate to their parents and family members what they are thinking. It is just the same basic gestures – food, water, toilet – over and over, for years. There is no way to communicate any deeper thoughts than that.”
One day, the child might discover that they will be sent to a deaf school. They might be excited that they will finally be able to communicate fully and learn things.
But, Charu says, that schooling in India for deaf children often forces children in a direction that is opposite to learning sign language.
“The harsh reality of India is that there are under 400 schools to cater to millions of deaf children, and barely any of the teachers teaching in these schools bother to learn sign language themselves. Most teachers expect us to lip-read or understand very basic gestures. They want us to also talk in their spoken language. They think that learning sign language will inhibit our ‘progress’ in learning the spoken word – not realizing that they are shutting our only door to the world.”
The focus is on memorizing facts and figures to pass examinations, instead of any actual learning. This is not too different from mainstream schools of India, of course, except in the case of a deaf child, this is a life sentence.
“My own education was a complete waste. I attended a Deaf school in Panipat, where teachers did not bother to explain anything to us. When they asked if we understood, we just nodded as there was no way to ask a doubt or get a legible answer from them.”
“One time, a teacher saw me talking to other deaf kids in sign language and hit my hands with a stick to get me to stop using my hands and use my voice instead.”
In this way, deaf kids in India end up graduating from school without having learned pretty much anything useful at all.
“We enter the world, 20-25 years behind the rest of our peers in terms of basic knowledge. We have that much misinformation to unlearn and relearn.”
Living with this humongous amount of misinformation hits young deaf girls much harder than young deaf boys. Charu shared how she and her sister (who is also Deaf) went through puberty without any idea what was happening to their own bodies.
“When each of us got our periods, we had no language in which we could ask our mom what this was. She had no language to explain it to us in either because none of us knew ISL (Indian Sign Language). So we concocted our own stories and came up with fictional explanations for what periods were. We thought they only happened to us. This is how it is for most deaf women. It isn’t until they learn sign language that they understand this basic life process. For many, this happens only after they turn 18. Can you imagine a girl going through her entire adolescence not knowing what periods are?”
Currently, India has approximately only 250 qualified ISL interpreters to cater to a population of over 1 crore Deaf and Hard of Hearing (HoH) individuals. Charu says that this inability to communicate holds deaf people back in every space.
“Imagine something as basic as visiting a doctor. I am an adult woman but I have to go with my parents. Doctors don’t speak sign language, so my parents will tell them what is wrong, hear the response, and give me a short summary of a long conversation. It is my body, but I don’t get any clear information about what is happening to me.”
A huge part of what holds Indian deaf women behind is the parental fear of ‘What will happen if we let them go out?’.
“Deaf children fail at school a lot. Even though it is because the teachers don’t bother to teach us anything in any meaningful way, parents often think it is because the child is slow or lazy. So, when it comes to higher education – especially for girls – parents think it will be a waste of time, and an unnecessary risk with the girl’s safety.”
Deaf children fail at school a lot because, well, our schools have completely failed them. But while the young deaf men get to move around, hang out with friends, see the world and explore the many learning opportunities it has to offer, young women’s parents move on to the favourite Indian default – marriage.
Saudamini Pethe is a prominent Deaf activist who has been working in the field of Deaf empowerment. She also happens to be the first deaf woman pursuing Law in India as a DLAW Fellow. She says:
“As soon as a deaf girl turns 18, parents want to get rid of her by marrying her off to the first guy who comes along. The girl is given no choice in the matter. This leads to some of the deaf girls facing a lot of discrimination, domestic abuse, marital rape, and sometimes, divorce. We have even seen parents react to these situations by immediately looking for the next guy to marry their divorced daughter off to.”
Even if a marriage does not end this badly, Saudamini asks, isn’t communication key to a marriage?
“Unless you have smooth communication, how can it be called a marriage? Marriage does not just mean having a woman to do your household chores, have sex, make babies, and raise those babies. What is the purpose of a woman’s life? What is our identity? Is that all we exist for? Since we are not able to communicate with our hearing families that much, we deserve communicating at least with our life partner. But many times, hearing parents want their deaf daughter to marry a hearing guy.”
According to Saudamini, the solution to all these problems begins with (1) the promotion of ISL, and (2) showcasing successful examples of deaf women.
“We organized a cultural program in Ambala. There was a Deaf girl participant whose parents wanted to marry her to a hearing person who obviously did not communicate in ISL. But after watching our program, they told her ‘Okay, you can go for higher studies, and later, you can marry a deaf person who knows and communicates in ISL’. The girl’s father even went on to make a donation for the cause. This was possible because they were able to see many deaf empowered women working together in the program.”
And in that spirit, here is a link where examples of deaf empowered women of India are showcased. And here is another. This is an open letter Saudamini wrote last year to a ten-year-old deaf girl who was kidnapped, raped, and murdered in Haryana, apologizing for the many ways in which we all let her down.
And that is this week’s newsletter. Like I said, writing it has been a heck of a brain expansion for me. I hope reading it was the same for you too.
Saudamini and Charu spoke to me over Zoom using ISL with the brilliant Pallavi Kulshreshta interpreting for us. It was easily the single most transformative Zoom call I have ever had in my life.
Last week, I signed up to learn ISL. If you are looking to learn a new language, may I suggest you sign up here?
Hope to see you in class!
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PS: Some kind readers wrote back to me after this post, asking for ways to help these wonderful organizations. Here is the link to the organization in Haryana that works with hearing and speech impaired children and adults. The details for donations to Niwant are:
Details for NAMV to make donation/payment transfer via NEFT
Bank name : ICICI Bank
Name: Niwant Andh Mukta Vikasalaya
Bank Account no. Saving account : 000501056700
Bank Branch: Bund Garden Road,
IFS code for the branch: ICIC0000005
In case of donation, they need : Name, Address, PAN number and Mobile/Tel.No. for sending 80G Receipt
Much love to everyone who will contribute. ❤️