Anjali's Blog

What is your song?

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I'm a TA for a class and they have to do this wicked awesome assignment to drive home the concepts of transformational learning and how powerful it is. You either have to design your own tattoo, that reflects your values, beliefs, norms, and attitudes or do a name that tune where you identify a song that is your song. It's the song that makes us think about our lives and what's really important in our lives. When I took the class, I did the design the tattoo, which I'm in the process of finding a good artist so I can actually get it.

But I've been thinking about the song one, and I have it narrowed to two songs, both are very powerful to me. The first one is the very essence of me and it is without a doubt "my" song. The second one is about my outlook on hardships and my approach to life. So I just thought I'd share my selections.

"Wonder"
Natalie Merchant

Doctors have come
from distant cities
just to see me
stand over my bed
disbelieving what they're seeing

they say I must be one of the wonders
of god's own creation
and as far as they see they can offer
no explanation

newspapers ask
intimate questions
want confessions
they reach into my head
to steal the glory
of my story

they say I must be one of the wonders
of god's own creation
and as far as they see they can offer
no explanation

I believe
fate smiled and destiny
laughed as she came to my cradle
"know this child will be able"
laughed as my body she lifted
"know this child will be gifted
with love, with patience
and with faith
she'll make her way"

people see me
I'm a challenge
to your balance
I'm over your heads
how I confound you
and astound you
to know I must be one of the wonders
of god's own creation
and as far as you see you can offer me
no explanation

I believe
fate smiled and destiny
laughed as she came to my cradle
"know this child will be able"
laughed as she came to my mother
"know this child will not suffer"
laughed as my body she lifted
"know this child will be gifted
with love, with patience
and with faith
she'll make her way"

Stand
Rascal Flatts

You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless
Like you've lost your fight
But you'll be alright, you'll be alright

[Chorus:]
Cause when push comes to shove
You taste what you're made of
You might bend, till you break
Cause its all you can take
On your knees you look up
Decide you've had enough
You get mad you get strong
Wipe your hands shake it off
Then you Stand, Then you stand

Life's like a novel
With the end ripped out
The edge of a canyon
With only one way down
Take what you're given before its gone
Start holding on, keep holding on

[Repeat Chorus]
Ooohhh
Then you stand yeahhh

Everytime you get up
And get back in the race
One more small piece of you
Starts to fall into place
Ooohhh

[Repeat Chorus]

Apparently these never actually were posted... Day 14 & 15

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Day 14

Relationships have never been my strong suit, I guess it's the introvert in me and the fact that I'm very reluctant to trust anybody other than myself. However, relationships with those in need, or with those who lack an advocate or support—those come easy to me. I can walk into a room with a kid who has been labeled as hopeless or abandoned or non-communicative or non-verbal and have meaningful conversation. I can connect to a person who has a lot of dark in their past and just listen. I always found it funny when I worked at Arrowhead that so many of the “challenging” kids would listen to me, and I still think a lot of it is I am short, I am literally on their level so I was not seen as a threat to them, I was seen as one of them.

I am deeply saddened by the fact that I can’t have the same conversations that Michelle and I have about life, about adoption, about world issues with the rest of my world. There are few people in the world who quote unquote "get it". Those of you who do, you know what I mean.

It is a travesty really that there are so many undiscussible conversations out there. Why don't we talk about this stuff? Why is it that people are so happy living in their own happy bubbles and that whatever is out of sight out of mind is not their problem? That bothers me.

Day 15

Goodbyes have never been a strong suit of mine. I suck at them. I hate them. They seem so final. Every summer, I absolutely with 100% certainty needed to spend a portion of the last night on my own with my own thoughts, reflections and to just be sad. I would sneak off to some remote location and stare up at the stars and just have my moment.

In India, I was happy, the whole time. You can tell that from my pictures. Yes, there were challenging moments, difficult conversations and thoughts about life, but that’s life! The crazy thing is that now my brain is operating at warp speed and there are SO many possibilities and opportunities and things to make sense of.

Ganga refused to go to her afternoon school because I was leaving, so she brought me to the airport. She was pretty pouty with me in the car, not so much my friend because I was leaving. On the drive to the airport, I was thinking of the realistic ways of continuing this discovery of India while at home.

I wish it were easier for me to go there, to live there. I don’t really have a vision for what I see India being in my life. I feel stuck between two worlds, one that doesn’t understand me, and one I know so little about and that is so closed off because of being an independent woman and disabled.

How can I help people with disabilities in India?

Things to think about...

Day 13

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There are so many things left to do, and we are running out of time! Yikes! Guess I’ll have to come back. That’s always how it goes though—never enough time to get everything accomplished because life isn’t linear. The learning never stops here at Shishur Sevay. The need for love and compassion also never stops. Things just keep on moving.

Today was an interesting day so far. I worked with the new volunteers showing them the SwitchIt program for the big mac button, showed them the picture cards I was in the process of making for the main room and the emotion cards I was also working on. I’m so happy that I think both of these projects will be done or nearly done before leaving! Thank goodness for enthusiastic, self-directing, intelligent, caring volunteers!!

Michelle and I spent some time today talking about the girls’ future and high level thoughts for where things are heading. It is nice to dialogue about this stuff. It is not being forgotten about. There are no easy answers, however.

Language barriers to my past or to India in general are so frustrating. I can read in people’s eyes that they are telling me something important, or that they care to share, or something I probably want to know, but I don’t understand it. You get this helpless feeling, and then you smile and nod. But, the truth of it is, do the words really make a difference or is it the love and the obvious compassion the massis and others have for us and about India? I don’t know. But, I hate that so much of this culture and this world is cut off to me because of the language barrier. It is a constant frustration.

Adoption is a funny thing. I don’t think I like the whole idea of buying a baby, or of a country exporting a societal problem that they don’t want to take the time to fix with education, civil rights and economic supports. But, I also get very sad when I think about what my life would have been like if I was not adopted. Would I have even lived this long? Probably not. I still don’t know where I stand on the international adoption issue. To me, domestic adoption is a totally different game, and for whatever reason it makes more sense to me.

I also think that I am inspired to learn a bit more about India. I know so little. I want to learn. The sense of honor, duty to others, these are very Bengali. I want to learn about the history of the caste system, about arranged marriages, about the colonization, about the various gods and goddesses of different religions, about the pathway for people with disabilities, about everything.

Maybe it's the academic in me, but there are so many things here that are worth exploring further--about identity development of orphans, about disability policy in developing nations, about training teachers/adults without relying on a strong first language or literacy foundation--all very challenging problems, but very important to day to day operations at a place like this. How do programs such as these sustain themselves? How do you develop a workforce in a population that is forbidden to work due to societal norms and traditions? I keep thinking back to the parents in the after school program for kids with disabilities, they were hungry for knowledge, and just needed the reassurance that there is hope and a future out there for their child, somehow.

...

More to come later.

Seema and Anjali at Shishur Sevay

Day 12

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Today was a busy day, it involved shopping with Gibi and Bijoy and getting 11 new volunteers oriented to Shishur Sevay!! So many exciting things are happening. It is hard to believe it will be soon time to return home. The new volunteers who came are so excited to work with the kids, to help out with anything that needs doing around the grounds (painting, landscaping etc.) as well as assist with the computers! I’m so excited to have a group of eager volunteers to help me finish the tasks that I have yet to finish and to transition them to teach and use the computer programs! How great is that?

Sorry it's so short, busy busy!

Day 11

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Day 11

We visited Bubbi in the village yesterday. The kids had a blast. The night before going all the girls got so excited about picking their outfit and accessories to wear. It was like being a kid again, watching them all play dress up and asking the older ones if that outfit worked or if they should switch necklaces etc. Miraculously we all were dressed and out the door by 10AM, not bad considering. Loading up the bus with the strollers for the kids, the umbrellas, the bottles of water, the snacks, oh yeah, the kids too… it was quite the process, but I will say I was uber impressed with how smooth this whole process went. Everybody just had their own job and we went.

Upon arriving, we had arranged for a wagon rickshaw to take me back to the mud huts because the path is very very narrow and rough terrain and parts of it the path has disintegrated almost completely with the weather. So I climbed on and had Michelle sit next to me to hold me on, because we all know how good my sitting balance is.

We visited with Bubbi and watched the storm. I had Sonali laughing so hard after we ate lunch, it was a full blown belly laugh. Gosh I love that kid. Once we got back to Shishur Sevay we were all pretty dirty and tired so we showered, had some fresh samosas and got ready for bed.

Today, I woke up late and observed some of the kids classes. I am continually impressed by the quality of care and compassion I see from the staff, teachers, massis and the sisters among each other. Michelle and I had a great discussion this morning about Sonali and both of our impressions on what she gets versus doesn’t get and different teaching methods to try with her. My take on it is, the kid doesn’t get enough credit for what she can do. Sure, it will take her a lot longer to make a connection than some of the others, but I am convinced she is able to. I am convinced that she recognizes people’s faces – after touching them or smelling your hand or looking right up at you.

Probably the biggest challenge that I see with her is getting the staff and teachers to understand the importance of patience. She is the type who will pick it up eventually, but it will take a very very long time and there may not be a clear indication that she is on the same page as you. It is very easy for a teacher to get discouraged or to keep trying different things, when what she really needs is that consistency to begin to piece it all together for herself at her own pace. The concept of play therapy is also new to a lot of the teachers I’ve seen coming in the door here. They claim to understand it, but yet they want the kids to sit and follow directions as if in grade school. For these kids, that won’t happen for quite some time. But, they do genuinely care, and that makes me happy.

The rest of the day was spent talking with Michelle, playing with Ganga – I showed her pictures and videos from Beijing, she was pretty psyched about that.
My brain is constantly thinking and going a mile a minute in a million directions. It’s very hard to capture even some of these thoughts, let alone make sense of them. The brain dump is as follows…
What happens to these kids in the future? What happens to those who have not been rescued/saved? What about those who don’t have an advocate? What damage is irrepairable by love for adoptees? Is international adoption really a good thing? How do you teach others positive interaction and ways to foster language development when there are tremendous language and literacy barriers? How do you decide which battles are worth fighting? Lots of questions. Okay, time for bed!

Day 10 - AM: Food for thought

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We are getting ready to head out to the village.I've been up for a while, I was catching up with Ian last night. Check out his latest blog here.

I sit here thinking about how I spend my days here in Kolkata. It is much different from the immediate gratification that Ian is able to accomplish in remote villages of India. The progress I am working towards is incremental. It is teaching the massis, the teachers, the parents of other kids with disabilities in India. The thing that baffles me is that the end goal that both Ian and I have is the same, and yet we both are setting out to achieve that goal in two very very different ways. Which one is better? Which one is more sustainable? Which one is more meaningful? The answer: they both are.

The girls I am working with this week are afforded so many opportunities that other kids with disabilities in India are not, and yet they are still limited and hampered by their community, by the culture, by the walls society has put around them. In America, we talk about these walls as well as a hinderance to people with disabilities, but let me tell you, those walls are NOTHING in comparison to what exists here. Everybody is afraid to ask the question of, what happens when/if they finish school? Do they have a life after? Do any of these kids with disabilities ever become adults? Meaning, do they ever become an integral part of society and life? The sad realistic answer is that very few make it.

On a personal note, one of my hopes on this trip was to figure out how India can be a part of who I am. I still don’t have an easy answer to this. What I see here day to day, I want to take these kids with disabilities out of their home country and bring them somewhere else in the world where they can have opportunities. That is not a solution; it’s a bandaid fix that also creates a whole mess of other issues. But for some, they are so limited by their surroundings, it is impossible to thrive in such an environment. I’m still thinking this one through…

I don’t understand the deeply rooted remnants of the caste system. I say this because there ARE people of higher classes who have disabilities. Disability is not linked to socioeconomic status in its entirety. In fact, the former ruler who lived in City Palace was disabled, so then why is there such a huge disconnect? Food for thought…

Change is slow. That makes it frustrating. Sometimes I wonder if what we do each day really does make a difference or if it would be apt to change for the better over time anyway and that maybe we’re just hindering the natural process of discovery. I’d like to think that isn’t true, but sometimes I do wonder. But for now, I’m going to go with the fact that small incremental change is worthwhile. I’d like to think that the smiles and progress that I’ve seen are genuine…I think they are.

Day 8 & 9

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For the 4th attempt at posting....

Day 8 & Day 9

The adventures still continue on here at Shishur Sevay and in Kolkata. Yesterday, I got the communication boards done for the kids trays—with symbols, pictures, English and Bengali. We got them all laminated as well hoping they will last a while.

Sonali and I have been spending a lot of time together. She is amazing. She has tremendous amounts of curiosity in her eyes. She also has a great deal of sensory needs. She loves to have her face rubbed, particularly just between her eyes above her nose. She is blind, so that is where she can see the best. She is the type of kid who melts your heart. She gets so excited when I come into the room and she figures out I am there.

I spent the evening with Gibi and the kids at her apartment! It was so nice to catch up with them all. Preeti had so many questions about Beijing. She loved pouring over the pictures and videos I had. Gibi made me my all time favorite food too, onion pakoras! They were soooo good. I decided to spend the night there with them last night.

Today I had a visitor, Kamala Joseph, my massi who cared for me when I was an IMH baby. It was so nice to meet her son as well.

Another exciting moment was when I came back to Shishur Sevay this morning after spending the night at Gibi’s, the teachers had taken out the computer and big mac button on their own and were using it with the kids!!!!!!!! Hooray for transfer of learning! It may seem simple, but it was certainly a moment to celebrate.

I’ve been thinking a lot about a class I took last term, leading sustainable change. Spending time here at Shishur Sevay, more than just visiting a place for a day like the school for the deaf etc. you really begin to realize the challenges that you face when trying to lead sustainable change in this type of environment. Not only are there deeply rooted traditions to overcome, but there are tremendous language and class barriers as well. Change is not impossible, but in order for it to be meaningful you must have soooo much patience. As a foreigner too, you are constantly trying to balance your suggestions with praise so you don’t offend anybody. Truthfully, the teachers here are doing an exceptional job with these kids.

I am beginning to miss some of the western affordances – air conditioning, nice hot showers. I suppose it is only natural to begin to miss those things though. Tomorrow we are going to the village to visit Bubbi (Michelle’s cow). We have rented a bus so that we can all go. I am looking forward to this trip!

Day 7

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Day 7

Power is out again, thank goodness for batteries and generators The girls are all in bed, and I am just sitting quietly thinking about the day. The day started off waking up with the girls at 5 AM, a whole hour later than for online class days, and getting ready for school. I walked with the girls to school and met the headmistress and all the children. I was introduced and talked to the boys and girls about all the possibilities that are out there in the world for them and shared a bit about my story. I will say, the Paralympic/Olympic thing is pretty cool; even though there is a significant language barrier. I learned quite a bit of Hindi in the four days with Ian, but now am surrounded by Bengali so am back to only knowing a couple words, but all the kids know the word Olympics, and when you say that and gesture wheelchair and then teach the new word, Paralympics, your message gets across just fine.

Two of the girls with disabilities are in an inclusion class at the public school. They go to school each morning and benefit greatly from socializing with their peers. How great is that? Here in Kolkata, where so often kids with disabilities are just kept hidden away or are forgotten about, that this is beginning to change. I hope they are allowed to continue on with their classmates as they progress through the grades. Change is happening, it is possible even in places where you would least expect it. On our walk back we acquired some fresh vegetables from various vendors, including one that was about 5 feet tall and apparently the outside of it can give you a rash of some kind so you are not supposed to touch it. I don’t know what it is called, but we had it with our dinner tonight with a bit of coconut, salt, sugar and it was delicious!

This afternoon was a busy one as well. All four girls go to a community run after school AAC program on the other side of town in Salt Lake. I was very enthusiastic about the opportunity to tag along, and am so glad I did. The other children I met there were fantastic and the staff/mothers were so grateful and appreciative just with my being there. I showed the families pictures of wheelchair racing, of my life. They asked tons of questions—all very good ones. They were curious about why I don’t use a power wheelchair, about if the buses are all accessible in America, about driving, about what my wheelchair was made out of, about how to get stronger arms, about the types of therapies I had as a child. They were eager parents wishing and hoping for what is best for their child, just like any parent, but who feels totally lost because of there not being much/any solid, reliable resources here to find out information. I kept hearing throughout the afternoon just how happy they all were that I was there and had answers to so many questions.

You know when your brain starts working in overdrive all the time? That combination of excitement and uncertainty where you keep coming up with all these crazy ridiculous ideas and you just keep sprouting off in new directions and before too long you are 100% overwhelmed by the past five minutes? Yeah...

So much excitement. Bed for now...

Day 6

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Day 6

I should be asleep right now. It is 11 PM and I don’t have to go on any 4 AM adventures through the streets of Kolkata to find internet tomorrow. However, I was just so excited as I was sitting here filtering though pictures from the day and I felt like I should post something about the latest adventures.

Today was a glorious day just spending time with the girls. I have a tendency to find “Camp Arrowhead” in random countries. Those of you who work/worked there know what I mean when I say that; for others, it’s finding a group of kids/adults with special needs who remind you of some of the “regulars”. Isn’t it funny how we all come back to what we know, “oh you know she’s like so-and-so but a little more mobile” or whatever the description may be, or, “her personality is just like so-and-so”.

After spending time with the girls today I have embarked on a few projects. The first one is to put symbols/words for a few everyday words on all of the trays for the girls. There are tons and tons of GREAT symbols that are filed in folders and arranged by categories and have the Bengali and the English with a drawing, but they are tucked away in folders. So goal number one is to get some of these pictures out and about and being used by everybody who interacts with the kids.

Goal number two is to label all the objects in the room they spend most of their time in with photographs, the Bengali and English. This will help to promote photo awareness and the beginning foundation for communication and language. Goal number three is to go back to the Tim Luff days of ADL, emotion cards!! To make a few emotion portfolios and teach the caregivers and educators how to use them to talk about emotions and how you are feeling at the start and throughout every day.

With one of the girls, I had to up the ante a bit. Ganga, the one who was up anxiously awaiting my arrival. She yearns for knowledge, you can just see it in her expressions, and she is the most vocal and already has purposeful communication. The others have a bit more to go, but they are certainly well on their way! I spent some time setting up some laptops with software to operate the BIG MAC button and games to choose and tell nursery rhymes. I exposed her to this software yesterday, but it was the novel thing yesterday and EVERYBODY was just so excited about it, it was difficult to teach it. Today, that changed. While the older girls were in their afternoon lessons, things were quieter downstairs and Ganga had just gotten up in her stander. I asked her if she wanted to play with me on the computer while she was up. The first sign of remembering what we did yesterday, was immediately when I set everything up for her on her tray, she used her cheek as she did yesterday to hit the button with excitement, followed by a smile of course.

In addition to scouring the internet over Google Images and fake laminating things, I do believe I held a speech language pathology therapy session today with Ganga. This picture is probably my all time favorite thusfar. She created and told her own story today, was so excited (can you tell?) and shared it with all of her sisters. How cool is that??

I can’t wait to spend some more time with her using it tomorrow. One of the other girls is very close to imitating her first sign, MORE. I have a strange feeling that by the time next week is done she will have mastered it. I want to write more, but can hardly keep my eyes open… more to come tomorrow!

Day 4 & Day 5

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Day 4 & 5

My last morning in Udaipur was memorable. Santosh, Pamna and I went out shopping for some jewelery for me. I wanted Santosh’s expertise and bargaining abilities to help me out. We found a beautiful necklace and earrings. I also wanted to get a new Indian nose ring, but I needed to go to the ATM first. Sometimes, that doesn’t work well overseas. Tried three ATMs and it didn’t work, so we decided to head back to Love Nest before going to the airport. Santosh really wanted me to have an Indian nose ring though, and so she gave me hers! It is very Indian. For those of you who have nose-rings, I’m not quite sure how it got in or if I will be able to change it out without help, so I may be asking for assistance!

Ben and I headed through Delhi and on to Kolkata. We arrived late on Monday night. My wheelchair even came --- out with the baggage. Kolkata is much different from Udaipur, the driving is a bit scarier and the population is considerably more dense in Kolkata.

Smiles and laughs, that’s what it’s all about. I arrived late at night on Monday to Shishur Sevay only to be greeted by one of the most radiant smiles you could ever imagine, Ganga, one of the girls here who has cerebral palsy, was so excited that I was coming she waited up. Ganga is the most vocal of the girls with disabilities; she is extremely intelligent and curious. I must admit, I am a bit of a distraction to her when she has her lessons going on because we just want to laugh together.

Ever since Michelle has taken in the girls, she and I have been in constant communication about things to try in terms of speech and language and alternative/augmentative communication. Who knew that speech pathology would still be a part of what I was doing. One of the first tasks I did yesterday was install some AAC software on laptops for the kids with the BIG MAC buttons. I worked with the language teacher and special ed teacher to show them how the big mac buttons work and how to start off with scanning-2 choices and then build to 3 choices and eventually 2 buttons etc. (See, I still remember some things!) For you speechies, I wish you could meet these girls, they are so expressive.
The other big task of yesterday was tracking down a reliable internet connection for my online class. Who knew that could be an all day affair. If you only could see and understand the process that it took to find this solution. I honestly don’t even know how to capture the ridiculousness and the frustrations of the situation, but let’s just go with the solution: I am currently in the basement of the five-star Taj Hotel (that I am not staying at) using their business center that they opened specially for me and had a back alley tour through the kitchens and store rooms to get here. It was literally an all day quest for internet, but mission was accomplished!

I am so excited for the next week to work with the girls! Pictures to come soon!!

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