Tag Archives: Women In India
Ratna Pathak Shah
The Women of Kashmir
An entire body of works, from 2007 till 2022, is part of a book project, titled- The Women of Kashmir. Over the years much has changed in my subject’s lives personally and in terms of their identity! I might take some pictures next year, as well, you never know with me! The book is divided into a few parts, some of the works have been shown over the years at the India Art Fair, like the one above but most of them have only been emailed to a few curators and ofcourse Mary Ellen Mark (attended her workshop in 2010) who was instrumental in directing the works this way .
Many a books have come out from the time I began. That doesn’t hinder my project in any way. When one initially began, the only way female photographers would shoot Kashmir, was to go through NGO’s. I took the same route, met Parveena and Parvez, though they were very helpful, I realized that I don’t do well with viewing the world through anyone’s eyes but my own- skewed, tainted, cynical ones! Plus, I’m not an activist, philanthropist not even a feminist. Right from the word go, from my first book, which is stark white and black with hints of colour, to my first film- Loss- which looked at the problems faced by the Kashmiri Muslim and Kashmiri Pandits, one holds what one calls the ‘ greediest view of the world’, wanting to look at everything- from every possible direction one can!
There’s much that one hasn’t been able to do in Kashmir, there’s much when I view the works in their entirety, look at and think, wait a little longer, try a little harder but without organisations pushing you, without proper press credentials and with being looked suspiciously at by both parties- the Pandits think I’m Muslim and with an agenda and the Kashmiri Muslims, a lot of times think I’m a spy; this is what I could do.
Like curator after curator, has been telling me, it’s time to release it, maybe it is! But one’s apprehensive, it ain’t good enough just about yet and once the works come out…I might not be able to return ‘home’!
Side note/ technology is handy, anytime you get accused by some hot shot-there’s Flicker, which will display all your file info and your emails, too can help determining who all were sent the images. This is valuable info for long term projects because anyone can quickly churn out something and turn the tables on you. When I put up the image above, a very famous male photographer got pissed with me. Someone who uses ‘black backgrounds’! Thankfully, for me the pictures had already been published, long before, he did his show and my first book, was filled with such pictures. Unfortunately, I can’t accuse him of the same because it’s needless, doesn’t work in reverse and two because I have studied and taught photography, so what a hypocrite I would be, to get my own references from international photographers and then accuse someone else!
Jyotsna Suri, managing director of Bharat Hotels Limited, epitomises perseverance. She is the perfect example of what women can rise up to, in the face of the toughest challenges. An English Literature graduate from Delhi University, with no training in hospitality, Jyotsna, was a homemaker; a mother taking care of her four children before she started managing the hotel business with her husband- Lalit Suri. She faced various challenges along the way- her husband was incapacitated for two years due to a surgery; after his recovery she took over additional responsibilities from him when he became a Rajya Sabha member and eventually after he passed away, she had to consolidate everything and prove the naysayers wrong, who claimed that the business wouldn’t run. She rebranded the hotel and is now counted amongst the top 50, of the most powerful women in the country.
Dr Suri, is not only a force to be reckoned with, in the hospitality sector but has also been a staunch supporter of her children. All four of them are involved in the business. Her unflinching love and support for her son, Keshav Suri, who is a LGBTQ activist, led her to perform with him at his first drag show.
I chanced upon her words recently and it amazed me how little we know the people we grew up around! Her daughters studied in C.J.M and the youngest one was a batchmate of mine. I remember her as a sweet, polite girl. We never moved in the same circles, so I had no idea what was going on with her! But when I read Jyotsna’s article, one got thinking about her, what her life must have been like, what ‘privileged people’ look like to the outside world but what goes on in their lives, is the same, sometimes more complicated than what goes on in yours or mine.
Much can be learned from Jyotsna Suri, not just for her own achievements; strong mothers, they show their children and the rest of us, how women can get up, multitask, build empires and fix any problem, inspite of the odds.
Museum of Illusions
‘Reality is merely an illusion, albeit a very persistent one.’ This famous quote by Albert Einstein can be found on the walls of the newest museum in town- The Museum Of Illusions. Situated in the heart of Delhi- Connaught Place, right above the iconic Wenger’s.
The concept is highly unusual-to teach you more about your brain. About how we perceive things, and how easy it is to miss the tiniest details. From Visual Illusions, that play with your retinal sensitivity, to size illusions, to Kaleidoscopes, to 3 D images, to Upside down rooms, the tricks will leave you bewildered. The 50 illusions that are part of the exhibit have been studied by some notable physicists and psychologists like Ehrenstein and Jastrow. Hence, they would be of great interest to anybody with an inclination towards science or the arts. For six hundred and ninety rupees, you get an hour of brain twisters and fabulous imagery.
Since, one navigates the city, primarily by oneself, as soon as I entered the space, for a fraction of a second I regretted going alone. But the staff was so attentive, that they immediately figured out I would need some assistance, as selfies don’t work with the tricks. So, all my pictures were taken by the crew: mostly by Neeraj who accompanied and took pictures of me, while giving me a guided tour. Since, the cases are spiking, the museum is very strict about COVID protocols and the only time people are allowed to remove their masks is when pictures are being taken. So take your kids, a date or just yourself without hesitation.
The museum in Delhi, is the first of its kind in India. The backgrounds used here, have local references- from a picture of Gandhi to a backdrop of CP. Initially, it opened up in Zagreb, Croatia in the year 2015 and now there are around thirty such museums around the world in – Athens, New York , Dubai, Kuala Lumpur, Paris, Riyadh etc. I hear, Bangalore and Bombay, too, will be getting their very own Museums of Illusions.
The Riderni- Preetpal
Solo Travels- Bijbehara
The last time I visited Bijbehara, was in 2016, for Mufti Sahab’s funeral. The Dara Shikoh, Mughal Garden is his final resting place. Brijbehara, is famous for it’s Chinar Trees and is known as the Chinar town. Also known as Vijbor or Vijbror, it’s around forty five kms away, from Srinagar. The oldest Chinar tree in the region can be found in Paadshahi Bagh. Both the gardens were closed, due to the ongoing pandemic but my taxi driver- Farooq Uncle, is a real hustler. He convinced the guards at Paadshahi to let me enter by telling them, I’ve come all the way from Delhi. The one’s at Dara Shikoh Garden, wouldn’t let us in because there were a lot of young boys, who were loitering around, trying to gain access.
Anyhow, on the way back we were famished and stopped midway, to pick up something from Hattrick. Right next to it, an older gentleman was serving the best Kahwa, I’ve had in Kashmir.
The only way to survive Kashmir on your own, is to miraculously find, soft spoken, kind local men, who like you, don’t like to listen to the word no. Now, before you start judging me, it’s in the context of work. I’ve never liked flexible people and especially when it comes to working with me…I like people who can lock horns, are stubborn in a quiet kind of way. They mitigate the effects of my aggression with their voice, yet manage to get the work done by not budging. Uncle is like that. He’s like a much older version of my former assistants. Plus, SC adores him. He calls her beta and fusses over her. ‘ I’m bringing a doctor for you!’, he told me yesterday. ‘ Na, I‘ll bounce back’, I reassured him. Like I say, this is the best place to travel on your own. From the hotel owner to the staff, everyone is awfully kind.
I find it unnecessary to look at different things or visit different places. It’s when you see the same thing over and over again, each time it starts to appear different and this is Jannat. Firdaus- jahan asli mein sadko par hure chalti he, where the women are stunning and the men gorgeous. Jahan sirf roshni badalne se sab alag lagta he aur mausam badalne se sirf ped, paude nahi badalte, aap khud andar se alag mehsoos karte ho. Yeh Jannat to he hi, jahanum bhi he, jahan itni khubsurti aur itna dard he. Both heaven and hell simultaneously, exist in Kashmir-there’s unparalleled beauty and gut wrenching pain, everywhere!
With the change in the technology and the increased megapixels that the cameras offer you now, the quality of the pictures is far superior, from my earlier works in say 2010. But when you live somewhere or spend an extended period of time there, drive around all the time, literally chasing the seasons, the moments you end up catching, can’t be caught that easily in a shorter span. But nevertheless, we try.
Solo Travels- Pampore
I hate flying and especially to Kashmir, as then one gets confined to the city. But last time, I was here, I found a very patient and polite gentleman who dropped me to the airport. So, Farooque uncle and I have been in touch, ever since I left and he’s probably the only person other than my ex assistant, and I, who knows what my plans are. See, dealing with my trust issues, trying to prove the father wrong, kissi pe itebar kar sakti hu mein, just a little bit!
So, FU, picked me up from the airport and drove me straight to Pampore, as the last of the flowers were being picked. The Saffron bulb, is said to have come with the Persian Sufi saints and traders to the Valley and though growing it helped the locals , it’s now fast disappearing from Kashmir. The farmers claim the land in the area, can only grow saffron and without it they will have a tough time surviving.
I spent a few hours working, then checked into the hotel. Charged my phones and then started walking towards Residency Road. To hell with Corona, that seems to be the attitude in Delhi as well as in Srinagar! Women and children, thronged the road , accompanied by their husbands and fathers, to the Sunday Market. I was followed by what seemed like 20 year olds. One slowly approached me as I stopped to tie my laces. ‘ Kyaa mein aap ke saath chal sakta hu?’ he asked very politely. I looked at him, SB growling at him, just itching to say something terrible but SC, replied, ‘ Mujhe akele chalne ki adat he!’ He tried to convince me politely, that there are armed men around and he’s just concerned for my safety but I just shrugged and kept walking.
It was past three and I was famished. A Kashmiri Thali at Grand, was what I was craving. The place was packed and a few people stared as I sat down to eat but I just looked at them and smiled as they gawked. Let’s not even pretend, people don’t gawk at women in Delhi, over here at least they don’t say, ‘ kyaa kare madam aap jesso, ko dekh kar hilana parta he!’ Yes! A man said this to me in Delhi recently, when I asked him, why he’s peeing on a flyover. Kashmiri men are probably the most decent of the lot, not all, but most.
Age has caught up with me, for sure. I finished the Thali, which had everything from Meethi Maaz to Gushtaba, accompanied by Rista, Seekh Kabab, Roghan Josh and of course Tabak Maaz ( which is the only Kashmiri dish I’m not a fan off). I polished off the food, with the same kind of pleasure I feel, as I land in Srinagar. Sheer bliss, total and complete love. ‘Please Death, whenever you come let it be here’, I find myself wishing when I feel, eat, do or see something that tickles my senses. It seems just the air tickles my senses, pleasure and pain are intensified!
Anyway, for the first time after gobbling the said Thali, one felt as one was going to explode but duty called. So I walked around making pictures, according to the brief. By the time I was done, it was getting dark but somehow I managed to drag myself to the Dal. Walked or bounced around is more like it (bouncing slowly up and down like a ballon, is more how you would describe my walk) prayed fervently, froze completely. By quarter to eight, I had spent almost two hours, just walking and sitting by the side of the Dal and my bottom was frozen by the end of it. Surprisingly, I caught myself thinking about MJ, a couple of times. ‘Mujhe kissi dewane ne kaha tha, ki mujhe koi dewana, Kashmir dikhayga!’, his message came to my mind. ‘ Would be sweet!’ SC thought, as I walked. ‘This Pathan is just messing with your head and your head is quite screwed up in any case!’ SB shut down the thought, quickly.
Rushed to a small cafe at Nehru Park and gulped down a cup of hot Kahwa. ‘Biryani Madam?’ asked the owner. ‘ I told him, I eat Wazwaan and couldn’t get a bite in. We chatted about Kashmiri dishes, Harrisa which is my all time favourite and Ab Ghosh. His father joined the conversation, as we talked about Kangris and village life. They asked me to stay longer, but it was already 8.15 and it would take me a while to walk back to Dal Gate, so I politely declined. As I walked back, I put the songs ‘ Hawa ke Saath Saath’ and ‘ Paniyon sa Paniyon sa’ on repeat, so that somehow I could miraculously, reach my hotel. They got the job done and here I am all set to call it a night!
Women of Shaheen Bagh
Anti CAA protests by Women’s groups and the LGBTQ community at Jantar Mantar
Manjari Chaturvedi at Jashn-e-Rekhta
Invisible People of Hauz Khas
Women March For Change- 4th April 2019
Women Against War-Plate 3
Women against war- plate 2
Women against war-plate 1
Women against war-plate 1
Women’s day 2019
A lot has happened over the past month. On the 14th of February 2019, as we are all aware, a convoy carrying CRPF personnel was attacked by a Fidayen. This resulted in the death of more than forty men of the Central Reserve Police Force. The attack was condemned by Indians, the International media and the Kashmiris. The Pulwama attack, led to the Balakot attack in Pakistan. The series of events which took place after that, had all of us glued to our television sets for hours, waiting for Abhinanadan to cross the Wagah Border.
All this while on this blog one posted nothing. ‘Zip it if you have to come here and cover anything’, I was told. Unfortunately, after the series of events, one has not been able to drive to Srinagar by one’s self. This year on women’s day, we dedicate the entire month to the Kashmiri women and to the women who ask for peace.
At the Aath March Saath March, today, a reporter said to Memuna from AIDWA, ‘don’t tell me about war tell me about women’s issues!’. To which she retorted, ‘Do you think war is not a woman’s issue?’. I stood there nodding my head thinking about the widows of the jawans, their mothers and their daughters. I also stood there thinking about the Kashmiri mother’s whose children have been attacked, thrown out of their paying guest accommodations in the middle of the night and had to return to the Valley, not knowing what the future holds for them.
Appeasement is what most would term my attitude towards Kashmiris. I would like to think of it as empathy. One’s never agreed with many things that the Kashmiri state but one’s also vehemently opposed the atrocities that are carried on in Kashmir. To not see those and stand against those, would make me inhuman. To not be moved by the plight of a mother or a sister, whose son or brother has been missing for decades, detained without any charges for years, blinded and worse tortured and killed, isn’t possible for me. If that makes anyone assume is because of a Kashmiri man, so be it! If that makes me anti national, so be it!
Before we go ahead and isolate every single Kashmiri, leaving them with no choices, let’s give compassion a chance. Before we accuse them of everything, let’s not forget for a minute that Kashmir is not just a state, the conflict makes it one of the most profitable businesses in the world and everybody other than mother who produces the child who looses his life, fighting from this side or that, has something to gain!
I arrived last evening and as soon as I did, it was like coming back to life. Met a few people, ate and crashed. Since the past two days had been quite hectic, I woke up exhausted. But since I am supposed to be leaving tomorrow for a trek, (no, not alone) I decided to stay in Srinagar and look around. But before that, the car seat which had been damaged by a person who was trying to help me, in Ramban with some battery issues, needed to be fixed. Driving around with no back support, on mountainous terrains is harder than you can imagine.
So off I went to the service centre at Nowgam. They couldn’t fix the seat but they got it into a position where atleast I get back support. To recline it they taught me a jugaad method. So much for highly automated cars, they come with their own set of issues which local mechanics are too afraid to fix and the service centres in smaller cities, don’t always stock their spare parts. But considering how well behaved my car always is, I should’nt bitch about it.
Talking about cars, after the service station I went to check out the Motor Cafe in Srinagar. Situated in Raj Bagh, it’s a very hip joint, perfect for off-roading groups, biker groups or travellers in general. The theme based decor is fascinating with pistons, crankshafts etc adorning the walls and with an engine that stands near the entrance, greeting everybody. Everyone by now must have figured out, one of my favourite places to sleep, is in my car. I took the table, where they have actual car seats to sit on. Oh, I shit you not, I was so tempted to recline the seat and sleep.
Though, it was supposed to be a solo date, I was joined by a friend as soon as I ordered my chicken and iced tea. Which was great because ‘Khappu’ ( a nickname my friends have given me) has a sweet tooth and she could share a chocolate crepe, as well.
Flaunt your flaws, as flaunting
your goodness, is the norm of this world.
Hide your passion, prayers and your kindness.
The intensity of your emotions and the blessings that will be bestowed upon you, will be mitigated by display.
Flaunt your flaws, as flaunting
your goodness, is the norm of this world.
Hide your passion, prayers and your kindness.
The intensity of your emotions and the blessings that will be bestowed upon you, will be mitigated by display.
Notes from the road- Guzarishe or Shikayate
Random thoughts that run through my head while driving…incase you are wondering what I do by myself. Mein aur meri tanhai aksar bateein karti he…
Everyday Women- Plate 9
Harper’s Bazaar Anniversary Issue- Self Centered
Single Women in India
What do you do when you are sleepless, yet too exhausted to work or read? Not what you’re thinking! The rabbit has been put to rest since the beginning of the year. One is channelling all the pent up energy and of course the enormous ego into work. A month from now, the rabbit will come out of the hole and Gadhadhari Bheem ( a nickname I was given during a shoot) shall become shaant.
Back to the point…checking out random posts on Fb. Chanced upon the post my chic Bengali friend had shared- a debate on NDTV: No country for single women? Apparently, there has been a 39% increase in the number of single women in India since 2001 and at this moment, there are 12% single women in India. There are a number of women I know, who have never been married for various reasons, one of the most important being unable to find a mate who is as well educated or well settled, as they are.
Why am I single? Well, one is such a pleasing concoction of being commitment phobic, more than a little nuts and when in love, oh so clingy- like a guy. Uff and so in love with the chase. I don’t particularly care who plays cat and who plays mouse, as long as the game is interesting. Also, dude when I hear married women speak about their lives, I find myself thanking the boy for his ambiguous ways. Blessing in disguise! I literally know only a handful of married women who look happy to me and no, none of them are married to rich men!
The debate on NDTV, with a panel comprising – Sreemoye Piu Kundu-author Status Single, Deepa Narayan, the author of Chupp, Sanjay Rajoura stand up comedian, Shikha Makhan film maker, Kanika Tekkrikal, Geet Oberoi- founder/ president of Orkid and a couple of other people, is worth a watch. For all of us, single women it is just reaffirming our realities. We are all used to terms like ‘ slut’, ‘ lesbian’, ‘selfish’ and ‘arrogant’. Arrogant we are, for knowing we can live our lives according to our own rules!
Here we go
‘Aap Ko Dar Nahi Lagta?’, they keep asking the coward of the century. The coward smiles, ‘lagta he!’ and answers the slew of questions that follow a reply like that, all the while feeling like a hypocrite. The long list of things she’s afraid of include- even the slightest mention of ghosts, using any toilet at night that’s not her own, sometimes the dark, intimacy, that everybody she loves is going to die before her, heights, closed spaces, crowds, hurting her legs, going blind…it’s an endless list.
Chatted with a group of women from Diu, while I sat on the steps of an eatery waiting for the man of the hour, to make me his famous sandwich. They told me how green and beautiful it was. As per my plan, which you know by now, I follow to the T, not:I was supposed to be there. But my gut, which will get me killed one of these days, wanted to bring me to Chhattisgarh and since I keep feeding the beast, here I am! From Daman to Raipur according to the Baba is around 1,153 km. From Daman to Delhi is around 1, 254 kms. But Raipur to Delhi is another 1,228 kms. So effectively, my butt is screwed.
Spent the night before leaving, listening to a song from Dangal on repeat for 20 minutes, as the gaurd at the Hotel, wondered why I wasn’t stepping out of the car. ‘Kuch nikalna he gadee se madam?’ he asked. I just shook my head and kept listening. As I got off the car, I chanted ‘Sava lakh nal ikk ladava!’, all the while shitting bricks in my pant. After all, I was heading towards one of the most dangerous places in India. All the threads on the auto sites, suggested not driving at night. Apparently, the border between Maharashtra and Chhattisgarh is a bit unsafe. Self hypnosis works well on the coward!
I left Daman the day before, to drive through pothole after pothole till Dhule and then the route got better. I halted after almost 400 kms at Jalgaon. The next day, the Great Eastern Highway, made my life easier, as I drove to Raipur. The sun had set and I had still not reached the border but the route was good enough to keep going, so I did. At a particular stretch, it was like driving through the Western Ghats, greenery, the stars twinkling in the skies, a two lane highway, which was thankfully not deserted. Till Rajnandgaon there was enough vehicular movement.
Honestly, I expected some drama but nope, nothing. No searches, no cops, no check points, nothing! It was smooth sailing. Checked into a hotel and spent the day shooting. Even contemplated driving to Bastar but decided to put a lid on the adrenaline rush that courting danger gives me.
Solo Date #50- Backwaters
I am too damn claustrophobic and paranoid to stay in a houseboat. Spend the night in a cheap motel and take a shikara ride the next day. I’m short on time, so I don’t do the whole nine yards. A bite and a few photographs at Tasty land later, I make my way to the next destination. Alleppey, goes on the ‘to do with a lover’ list. Though, I have yet to find one whose company, I enjoy more than my own.
AN ODE TO GAURI AND ALL THE ‘ANTI-NATIONALS’ WHO WILL GIVE THEIR LIVES FOR THIS COUNTRY.
‘NA HUMME GUJARAT KA FARAK PADEGA…NA KASHMIR KA. NA HUMME GANDHI KA FARAK PADEGA AUR NA GAURI. HUMME SIRF ‘HINDUSTAN’ KA FARAK PADEGA…JAB TAK KOI HUMARA NAHIN MAREGA! WAH DESH BHAKTO WAH…JASHN MANAO… BHARAT BIKHR RAHA HE.’
Bulbul Kumar did her Masters in Geography and works at the Shri Ram School-Aravali. Here are her thoughts.
Feminism is gender bias and disproves the concept of equality, rather than promoting it. It can be abused and exaggerated.
If there was a female code what would it entail?
Code of conduct for women and men should be alike.
A woman who has inspired you?
One woman who has inspired me is my friend Liz..she’s a mom, wife, daughter, daughter in law, friend, doctor etc..how she multi tasks all her responsibilities with patience and no cribbing amazes me..yet, she has time for herself (exercise, beauty parlour, dinners etc)..
© Text and Photograph- Bulbul Kumar.
16th December Kranti
They say after a certain age our faces become roadmaps of the lives we’ve lead. Looking at Merry’s face one can never imagine the life that she’s lead. In her 60’s, she comes across as a chic 45 year old, with an inexplicable joie de vivre.
Here are excerpts from a conversation with the Director of AFA; an Ashoka Fellow, about her life.
How did you get into the area of special needs, particularly autism?
I was working in the field of special needs after college. But never thought of it as a career. I only got into it full time after my son received a diagnosis. Though not right after. Initially, I was trying to find out more about the condition. To learn what autism is all about. But I kind of got into it full-time 25 years ago.
Twenty five years ago where there a lot of places where one could find information about autism? What was it like for you at that time?
When Neeraj got the diagnosis, which was more than 25 years ago, there was no place a person could turn to. People really did not know what autism was. A handful of places knew about Autism but they did not know what that really meant- what a person with autism was really like? What were their needs? What were their strengths and difficulties? When I started out there really was not there anything in the country on Autism.
Was it very difficult to lead a normal life at that time? There are a lot of people who have a victim complex and yet when I look at you, you come across as a normal happy go lucky person. It translates into the organization you run and the relationships you have with your co-workers. Did you ever feel like why was all this happening to you?
Initially before I knew Neeraj had Autism, I did find life very difficult because I could not understand why I was not able to do the kind of things and be the kind of mother that other mother’s were. I kept thinking that once he’s a little bit older he would outgrow all of this. I just thought that maybe my son was a little slow and that was all right with me. But when he was diagnosed with Autism, I would say that for a month I was in a bit of a daze. For the first time I realized that the life that I was leading was going to be my life forever and that was a bit of a shock because till then I had thought this was going to change. I never thought why is this happening to me because I know that nobody has a perfect life and perfection is a very relative thing. The other difficult bit was after the diagnosis I wanted information about how to help my child which that was absent. It was like being thrown into a void and not knowing what I could do to help my son with something called Autism and you just sit with it. That inaction was what I found really hard to deal with.
So what did you do after the diagnosis?Initially, I went to the American Library and the British Council library in Calcutta, where I was staying to read up on Autism. There was nothing there. So I called up a friend who was a doctor in the U.K and told him about the diagnosis and asked him to send me some literature. He sent me a book, which when I think back now, was very basic. But it was like clutching at straws, having something to hold on to. Even internationally there were only a handful of books that had been written about the disability. It was only in the 80’s that the awareness spread at least internationally.
There were three instances that changed it- One was that in the U.K Dr Lorna Wing who was also a parent talked about the ‘triad of impairments in Autism’ and that made us sit up and think about it. The second was the film Rainman with Dustin Hoffman which did an exceptionally good depiction of a person with Autism. However, not all people with Autism are like that and not all people have special skills like Raymond Babbitt did. The third thing; a very important one which I did not get the benefit of till another 6 years later, was a book called ‘Emergence: labeled Autistic’ by Temple Grandin. She was the first person with the disability to write a book on what it was like to be autistic. When I read her book for the first time I thought, is this what my son experiences? For the first time I started to understand Neeraj. These were the things that began to change the world in the late 80’s.
Was diagnosis also harder because of the large spectrum?
There are a lot of people with autism who in earlier times use to get a diagnosis of intellectual impairment. Even now what happens to people who are in two ends of the spectrum, they get misdiagnosed. The very able ones get misdiagnosed as stubborn, willful or arrogant people. There is a serial called Big Bang Theory and the character of Dr Sheldon Cooper (it’s not mentioned that he has aspergers) is described on the Internet as a person who plays the role of an arrogant physicist. That’s it! A lot of the able ones get this kind of diagnosis. However, those who are on the other end of the spectrum get a diagnosis of intellectual impairment. In India, definitely a lot of people even now are not receiving the correct diagnosis.
Did you ever try sending Neeraj to school? What did you think of the schooling system?
Initially, Neeraj went to a nursery school before he got a diagnosis. All he would do is walk around the class and walk around the playground. He wasn’t learning anything there. The school was happy to keep him but they also said this is what he does and we don’t know what to do with him. I tried various things in between and then put him into another mainstream school. Neeraj does a lot of flapping of the hands, so a person from this particular school said to me that he was very violent and they couldn’t keep him. So mainstream schooling did not work out. Now, someone like Neeraj would have been permitted or maybe not! Since he had a lot of challenging behaviors- like shouting, throwing things etc. He attended four schools before I got myself trained and opened up Open Door.
Was this hard on your marriage?
I wouldn’t say Neeraj was hard on our marriage because my life had become Neeraj. Especially, when your child has very challenging behaviors you’ve got to really focus. I was the primary care giver, I was teaching him communication. I was teaching him to develop a social understanding. So I wouldn’t say that was hard on our marriage. For most families (not all), the mother ends up being the primary and the only caregiver.
Where did you receive your training and why did you decide to go for it?
After the age of ten Neeraj’s behavior became fairly extreme. So life was very hard at that point. All the reading that I was doing made me realize that people by and large did not understand Autism. I wanted to help change this terrible trap that we had got into; we were hurdling towards a phase where I wouldn’t have been able to help him at all. That’s why I went for a training to the Sun Rise program, which people found fairly controversial ( I didn’t). They used a lot of structure, behavioral principles etc. But the most important thing is that it was based on a very strong respect for the person with the disability. When I came back I worked with Neeraj using these principles. When I saw the changes I decided to work with another young person, who needed help. Realizing how important structure was in their life, I went for another training to ‘Division TEACCH in North Carolina’. Open Door started as an experiment and then it just took off. Now, it’s not so much a school as it is a place for training; it’s a place for developing strategies and a place for sharing.