In this post I wanted to focus on my experience with the Down syndrome federation of India which was definitely one of the highlights of the D2020 World Project. Before starting this adventure people would ask me why I decided to put India on the list of countries I really wanted to visit. India is such an important country in Asia that going on a World Tour without visiting it would absolutely make no sense at all. I had a certain image of India that really made me wonder what it would be like to have Down syndrome in such a complex country therefore missing out on it would have been a shame. Even though I still don’t know how I feel about the whole country, meeting in Chennai with the Down syndrome Federation of India definitely changed my thoughts on India and on the World. You’re about to discover why…
Many people have asked me if my sister Victoria would come with me on this world tour. I have to admit that in the beginning I had thought about it but for different reasons I thought it would be better if she didn’t. The first reason being: she has a job! Madame has to work! So getting her out of her job to go on a three month adventure was definitely not an option. Secondly, I believed that three months, hoping on and off planes, touring, her having to see my face every day, might be a bit too much for her and for me. Trust me, I came back completely exhausted from this trip and having to avoid the coronavirus at the end of the adventure was a huge challenge and I’m thankful that my sister didn’t have to go through the whole stress I went through. It really made things complicated!
On the other hand, it would have been an adventure that would have been unforgettable for both of us! I mean, who can say they have gone on a world tour with their sister and had the chance to meet other people with Down syndrome around the world. Maybe next time…!
Before leaving to India I was already quite nervous. I had no idea what to expect and certainly did not know if I'd like it or not… I have to admit that before leaving on this beautiful adventure India was the country that got me the most nervous because I knew it would impact me but didn’t know in what way! One thing is sure now, I didn’t know it would impact me the way it did. Concerning the D2020 World Project I did not really know what to expect. What would Down syndrome be like there? I had never seen an Indian with Down syndrome before! India is portrayed in our western minds as a country of interior peace, beautiful colours, a unique wildlife, the body burnings next to the river in Uttar Pradesh and of course as the home of Mahatma Gandhi. However, India is also portrayed as the home of a special type of poverty, where the rich and the poor live in enormous cities, kids are on the street, etc. That is what we imagine India, but India is a lot more than that. A LOT more!
January 23rd 2020. When the driver arrived at the building of the foundation I was a bit nervous… The address was quite confusing and I was terrified of him letting me in some random place and realize this was clearly not the place I was supposed to go to. I had sent thousands of emails to the foundation so getting there late or even missing it was not an option! I just had to be there! India was a key country that I was really looking forward to visiting and after all my ups and downs I was so curious to learn more about Down syndrome in such a peculiar country.
As I got out of the car, I realized there was no way of me getting lost. There was a huge sign at the entrance of this building with red walls that said DOWN SYNDROME FEDERATION OF INDIA. I had made it! To be honest, during my whole trip finding entrances of some foundations was always a bit challenging so I could say that this sign honestly did help to make things easier! I slowly approached the main entrance with my bag on my shoulder, amazed by the size of the house and suddenly saw many many shoes on the floor. Therefore, I decided to do the same and take my shoes off too. At that moment I also tried to remember what type of socks I was wearing… When you travel and you’re only allowed to take a few things in your suitcase you don’t often think if your socks match your jeans, t shirt or even if they match… Luckily enough that day I was wearing normal summer socks and didn’t have to show up with one grey and one black sock on each foot. I was also lucky none of them had a hole otherwise it would have been quite embarrassing.
As I entered the building in a bashful way I realized there were many people sitting at the end of the room. I could hear kids, laughters, cries, and many many different voices. « Mmm Good morning! I have a meeting with you, my name is Edward Bradley… » I said to the man that was at the entrance. Suddenly a kind lady came up to me and invited me to sit down in a room where I was then welcomed by two other ladies. At that moment I wasn’t really sure who was who and couldn't remember everyone's names! I also remember being quite confused because I had no idea how this meeting would go. I had been totally breath taken by my meeting with the Turkish foundation in Istanbul (see previous post) that I did not know what to expect in a country that had left me completely confused about absolutely everything! Or so I thought…
So there I was sitting comfortably on a sofa explaining my project to these three ladies who had nicely welcomed me. Little did I know that one of them was Dr. Surekha Ramachandran, the chairwoman and founder of the Down syndrome federation of India. She started speaking and she completely caught my attention just by hearing how proud she was of the foundation and through her gestures I could really see she meant every single word she said. Sometimes in Spanish I refer to people as « luz » which means light, meaning that that person somehow shines by their positive energy and just by their way of being themselves. In other words they catch your attention and convey the genuine good vibes they have. Dr. Surekha Ramachandran is one of the few people on this planet that I would describe as a light. She conveyed so much good energy, but also strength, and the will and need to help others.
She then invited me to meet the group of mothers and fathers sitting at the back of the main room. I suddenly got a bit nervous because I had never talked about my project in front of so many people who have a child with Down Syndrome. I had already talked about it to a few classes of primary school kids in Spain but had never really mentioned it to parents who were now forever linked to someone who would change their way of seeing life, just like it changed mine. At the same time I couldn’t stop smiling because this was what the project was all about, having an exchange with people who know a lot about Down syndrome and my will to learn more about what it is like to live with it in different countries.
I was lucky that one of the ladies that had welcomed me was there to translate what I was saying to Chennai’s local language called Tamil. A majority of people in India speak Hindi but many regions also use their main local language to communicate. It was quite funny because I had never had someone to translate what I was saying so I had absolutely no idea where to stop or how fast I should go. Having also no idea what Tamil grammatically looks like I had no idea how long it would take to translate one of my sentences or how difficult it could be.
Most parents who were there sitting on the floor or standing at the back of the room were all parents of children who were quite young. Most of them were mothers but I was also quite happy to see a few fathers. I think I was surprised because before arriving at the foundation I described India as a « man’s man’s man’s world » mostly due to the fact that in New Delhi, Agra and Mumbai I had seen a huge majority of men on the streets and only a few women. I remember it being something that really personally shocked me so I think I unconsciously associated education to women as it used to be like in the past here in Western Europe. I have always thought that education is something that should equally come from both parents, so by seeing both parents being there made me happy.
Before I knew it, there I was, standing nervously in front of so many eyes ready to talk about the D2020 World Project. I had no ideas this would happen therefore I hadn’t prepared any specific questions for the parents. I decided at first to talk about my sister because I thought it would be interesting for them to know what she does in her daily life. I told them that my sister lives alone and that she has a job that she goes to by herself. I also told them that she speaks fluent English and French and suddenly Dr. Surekha Ramachandran stopped me and told me that some of the people who were there and some people with Down syndrome in India could speak up to four languages! I was amazed! This is where you realize that sometimes we are the ones who set limits to other people, and why should we? Four languages! I have always been a huge admirer of people who could speak various languages and knowing that a person with Down syndrome could speak four was simply incredible. The parents laughed when they saw my face because I could not believe my eyes. What a huge opportunity they were giving to their kids to speak so many languages. Speaking different languages makes you think in many different ways, it opens your mind, and in some way it must develop something in your brain that allows you to hop from one language to another more easily.
I could not tell you how long I stood there in front of them, I did not care about the time. It was just magical! Some parents even asked me questions in English which really made it possible for me to answer directly without having someone to translate anything to the person who had asked the question. Of course the person who was there to nicely help me would also translate it to Tamil to make sure everyone could understand, but it really made me feel like they were interested in my project and interested to hear about someone who had lived all his life with a sister with Down Syndrome. They all had so many important and interesting questions that for the second time in this adventure I really had the feeling there was one thing in common that brought us all together: diversity, and in this specific case, Down syndrome. They asked me all the questions they had and I had the chance to ask them all the questions that could come up to my mind! During our whole conversation I did not know where to look. They all had something in their faces that caught my attention. Was it the smiles? The laughs? The fact they were listening to every word I said? Or the fact that we were all there gathered around one thing we all had in common. India was definitely the hardest country on this world tour but there I was standing there and it felt like the time had stopped. It felt like I was somewhere else. It was just me and them.
Sometimes Dr. Surekha Ramachandran would intervene and they would all laugh. You could clearly see that each one of the parents was somehow grateful to be part of this community where everyone was welcome. I don’t know what it is like to be a parent of someone with Down syndrome and I believe it is impossible to guess what it must be like. But please don’t get me wrong! Do not focus on what could make their job as parents a bit more challenging! I am talking about the way they looked at their kid and couldn’t stop smiling. All the parents were there and they could all share their different stories. Dr. Surekha Ramachandran also told me that some parents would ask questions such as « When will my son/daughter talk? » « Why can she talk and mine still doesn’t? » And she would tell them that each kid was unique and different.
After a while we all moved to the court they had outside to take a picture. I still had my funny socks on and now that I look at the picture I think I was the only one who had socks on… If I had to pick one favorite picture of my meeting with the foundations during this world tour I think this would be the one. Seventy two of us sitting on three different steps and so many different colours. It almost looks like a painting. As I showed the picture to my family and friends they would often tell me that they couldn’t find me in the photo. Frankly, the picture was not about me, it was about all the others! Through this picture I could share my experience with the rest and send a bit of « India » to everyone also informing them about what I had learned about Down syndrome in this country.
After the photos I also answered a few more questions they had and once again, I could not tell you how long I stood there in front of them. It was a unique moment and I would have stayed there even longer if I had had the chance. There was one thing Dr. Surekha Ramachandran and I certainly had in common and it was that both of us like to talk! Therefore, if someone had not stopped us to tell us it was time for everyone to grab some food, I think we could have continued a lot longer. In the end some parents even came up to me to have a little chat and this meant the world to me. It proved that they were interested by my answers, by my project, and that they wanted to learn more. I remember one father who came up to me with his son with an orange shirt and asked me one question: « Do you argue more with your sister than with your brothers? ». At first I thought it was a quite peculiar question and told him that I don’t necessarily argue more with Victoria. I then explained that in my house we were all treated the same way, therefore there was no reason for me to argue more with my sister than with my two brothers. Generally I do believe that if we treat everybody the same way it is harder to see the differences between each other. It doesn’t matter if you are different, what matters is how you treat people who are different and that does not depend on them, it depends on you…
I remember him holding his son in his right arm and I really wish I could remember his son's name. He was a bit tired but he had these beautiful eyes. They had shaved his hair a few days before for what I believe was a religious ceremony so he looked like a little monk. A mother also came up to me with her daughter that had a lovely dress and I managed to get a goodbye kiss on the cheek. While we were taking the photos I also sat next to a young kid who looked at me in a very concentrated way which made me laugh. He smiled in return. I’m not sure who his mother or father was but we had a funny little moment. It lasted seconds, but as I often say, on photos it lasts forever.
It was then time for me to leave. The kids were getting hungry and the driver was at the door waiting. I thanked every one of them, especially Dr. Surekha Ramachandran and her team who had kindly welcomed me. Allowing me to be part of the group was simply magical and even months later I still remember that moment as if it were yesterday! India was tough but my time at the Down syndrome federation of India had completely thrown to the bin all my negative thoughts about the country. Had I misunderstood the country? Yes. Had I misunderstood the Indian culture? I think so… A phone call from Dr. Surekha Ramachandran a few minutes after arriving at my hotel also confirmed my new thoughts. We had a nice conversation about the meeting, about our families and I didn’t know how to make her understand how grateful I was. She told me that I had just met the group of younger kids and that the groups of older kids were different which made me want to learn more! I will not tell you more about what we talked about but I do believe that Down syndrome connects people in a beautiful way. I will however end this post with a beautiful sentence of Dr. Surekha Ramachandran’s daughter concerning people who stare at people with Down Syndrome: « People look at beautiful people only… »
For more information about the Down syndrome Federation of India do not hesitate to visit www.downsyndrome.in
Please let me remind you that all point of views and impressions are completely personal and do not necessarily reflect the ideas of any foundation.