Good afternoon everyone! Welcome back to the D2020 World Project website and thank you very much for following this adventure with me. I am sorry about the delay but this week has been intense and magical for many reasons… In this first post about my adventures around the world I would like to tell you about my afternoon with Down Sendromu Dernegi ( @downturkiye ), the Turkish Down syndrome association, where I got the chance to meet 4 Turkish Down syndrome young adults and their two helpers.
On Thursday 9th of January 2020 I arrived to Istanbul on a Turkish Airlines flight from Madrid. I actually decided to start the D2020 World Project tour in this specific city because of what it represents. Istanbul is the gateway to Asia and has always been a metropolitan city that has been influenced by both sides of the Bosphorus. Although the historical district of Istanbul - Fatih-, which used to be Constantinople during the Roman Empire, is built on the European side, the city now expands to the Asian continent where you can now find many modern tall buildings just after crossing the famous bridge that connects the two continents.
The Bosphorus bridge was opened in 1973 and I thought that by starting this crazy D2020 adventure by crossing this bridge it would symbolise many ideas that I would like to share with the world. The first one being the mix of cultures. I strongly believe that we can all learn from different cultures and none of them is better than the other. Each one is different and Istanbul is the perfect example of what you can build by mixing up traditions, knowledge, and most importantly ideas!
The Bosphorus bridge also represents connection and by creating the D2020 World Project I wanted to connect you all to the world, but also, to people with Down syndrome in every single country I am going to visit! If one wants to raise awareness about something one has to learn to connect to the people around them to be able to convey their ideas and thoughts.
And last but not least, this bridge is all about standing out. This 165m high bridge, higher than the famous Sydney bridge, is hard to miss when you are in Istanbul. Illuminated by red and pink lights at night, this bridge stands out just like the people with Down syndrome that you cross in your every day life, either going to work or going to school...
What actually surprises me is that almost everyone knows what a person with Down syndrome looks like. Last December I went to present my project to various classes in two different schools in Madrid and surprisingly more than half of the students (between 10 and 13 years old) could actually tell what a person with Down syndrome looks like. They could actually associate them to the words “Down syndrome” and differentiate them from autistic people or people with other mental handicaps. Therefore, in some way we could say that people with Down syndrome already do stand out. Think about it, when we imagine a group of disabled people we automatically imagine the person in a wheelchair, the blind, the deaf and someone with Down Syndrome. This is actually something that was commented by the director of Down España (Spain) and he also commented that it had a negative effect on Down syndrome. On one side it helps for people to know what Down syndrome is, how to recognise someone with Down syndrome, but this situation has also put them in a situation where people don’t actually focus on what makes them just like us and a majority just focus on the handicap.
Therefore, this is where the D2020 World Project comes in! Connecting different people to Down Syndrome around the world to make them stand out and feel safe about themselves. Just imagine what it is like for us to feel safe about ourselves… Now imagine what it must be like for someone who is stared at constantly just because he or she was born with an extra chromosome.
Anyway, back to Turkey! What an incredible four days and among the many different things I learned in Istanbul one specific thing stands out: I have to check my Spam more often! For weeks and weeks I had tried to contact the Turkish foundation because I thought that Istanbul was a key city because of all the different reasons I mentioned previously. I had also asked for help from Down Syndrome International, based in England, who copied me in a mail to Gün, their contact in Istanbul, so that maybe together we could get an answer. At that time I was thinking “what type of foundation would actually answer an email from someone this young who is telling them that he is going to go around the world to help raise awareness on Down syndrome”. It is unfortunately not very common and I will forever be grateful for their trust. Honestly, if I had received a mail like that I wouldn’t have believed any of it. A world tour in 90 days only and wanting to meet Down syndrome foundations in each country? Estas loco?
When I think about it I actually would love to know what the people in New Zealand, the first country to confirm their participation in the D2020 World Project, actually thought when they read my email. I had no website and barely had content on social media. I guess that sometimes you just have to give a chance to crazy ideas…
When I boarded the plane to Istanbul on the 9th I was a bit disappointed to not have obtained any meeting with Down Sendromu Dernegi. On the day before heading to Delhi, 12th of January, completely nervous about going to a huge country like India, I actually had a look at my Spam. This is something I actually do once every six months, and guess what… by surprise… there it was! The golden ticket to the first foundation of the world tour! This was like Charlie going to visit Willy Wonka! When I read the email my eyes were wide open and the only thing that came out of my mouth was “Oops!”.
Oh no ! Why hadn’t I thought about it before? Always check your spam! There it was waiting for me since December 18th and I had no idea. I directly answered asking if it would be possible to meet them the next day clearly knowing that it would be impossible on such short notice but why not give it a try! I felt awful as this was my first big mistake and I could not leave it as it was. I had to do something. This project means so much to me that I was really hoping for a positive answer from them! We are talking 7 or 8 PM at night, so in no way they were going to organise something for mister nobody for the next day. I guess I was wrong.
This is why you have to believe in yourself, believe in your project and believe that you can make a difference. The foundation did answer my desperate mail and proposed to meet me the next day around 12PM (my flight was at 9PM so I knew this was going to be a rush but I could not give up on my project…). My face changed completely and I went to bed nervous but with a smile as big as the Bosphorus bridge. I was nervous because this was not organised and I knew that on such short notice I could not organise everything I wanted to do with the foundation. I couldn’t stop smiling though. As I said, this was the first big step to presenting my project to a foundation that actually believes in it and is willing to help. I could not disappoint them or make them feel like they were losing their time!
The next day around 11:30 AM I said goodbye to my friend Pablo, from Madrid, who had accompanied me during these four days in Istanbul. If you want to know the best places to eat in Istanbul, call him! I spent four days eating and stuffing my mouth with Baklava, a typical pistachio dessert from Istanbul. It’s green, tasty, local and it comes haunt you when you go to bed! I don’t know what they put in it but it clearly makes you want more! Anyway, I will let Gordon Ramsay talk about international gastronomy and I will focus on telling you more about my first meeting.
When the taxi got to the hotel, the man at the door started putting suitcases at the back of the car. I don’t know who they belonged to but I guess they are thankful I told the man they were not mine because otherwise, if I hadn’t noticed, I would have left them in a random taxi on the asian side of the city! Clearly not the best way to finish your vacation… The foundation was actually quite far from the hotel and when you don’t speak the local language and you are traveling alone there is always this little voice in your head saying “what if you have the wrong address and you get lost?”. No phone, no Turkish, and who knows if someone was going to understand me. I often over exaggerate personal feelings so you can imagine me in the car, crossing to Asia on the Bosphorus bridge, sweating, wondering where I was going. When I got out of the taxi I managed to find the door of the foundation quite quickly and the lady at the door welcomed me in. I was directly saluted by Emin who is one of the helpers who welcomed me in a room where two young adults with Down syndrome were waiting for me.
At first I saluted Erden, this young boy with his big fat blue coat on and his hat. Obviously I do not speak Turkish so at first I had no idea how I was going to communicate with him. However, even if you don’t understand a language facial expressions and hand movements help you understand what the other person wants to say. Next to him there was Robert, also a young man who happened to speak perfect English. He had glasses on and somehow reminded me of my sister. I don’t know if it was the skin colour, the British humour or his purple jumper but something reminded me of Victoria. Emin sat down in front of me and we started talking about these two gentlemen before he asked me about the D2020 World Project. I then asked him to explain a bit more about the foundation and now that I think about it, we sat there for quite a while. I don’t know how long we all stayed there but everything was so interesting and so relatable that I just stopped caring about time and about my flight to India. I was living the moment and they welcomed me so nicely that I almost felt like home. I guess being with someone with Down syndrome reminds me of Home and that automatically calms me down. All those feelings of being nervous and stressed had completely disappeared and we all took the time to talk about ourselves and our hobbies. Erden let me try his glasses that were really cool and made him look like a Hollywood star and Robert showed me pictures of his family, proud of each of his relatives. He also mentioned he liked basket ball like my sister and that he used to play or still plays!
Down Sendromu Dernegi was founded in 2009 by three Turkish women who had kids with Down syndrome. They had no information about it and did not have any books to inform themselves therefore they decided to start a foundation which now, only a few years after, works a lot with European foundations such as Italy and Greece. They focus on education, giving a voice to people with Down syndrome (the foundation went to Ankara, Turkey’s capital city, claiming their rights as citizens which resulted in the creation of a official group for disabled people’s rights) and also focus on leading these young adults to an independent life. A few years later they had more than 100 people with Down syndrome working and actually taught the government what special needs these people have. Having to help someone with a mental disability is a job and they are working to have it officially recognised as a professional job meaning that people need to get specialised in such an important task.
I was quite surprised to hear that since 2014 they work closely with Italy and follow their program to help their young adults to be independent. It is important for people with Down syndrome to actually have their own lives as adults. My sister would often say to my brothers and I “I want to be like you!” so by giving them independence we are giving them less reasons to see the difference between them and us, and I believe that we would also see less difference. In Madrid I used to go to a Starbucks where there was a young man with Down syndrome called Diego, a Real Madrid fan, who worked there. He used to clean the tables, clean the floor, and help with anything his other team mates needed. I guess he was the first working person with Down syndrome I met and it just confirmed my thought that they can perfectly work surrounded by people who do not have Down syndrome and not necessarily have to work with people who have a handicap. I realize it is not always possible but I think that it is important to know that they can! Being independent also means understanding transport, money, and also being part of different activities such as cooking or dancing. Down Sendromu Dernegi actually helps the young adults every week and proposes many different activities. On that day the other half of the group had cooking class!
Unfortunately in Turkey people do not make the difference between Down syndrome and other disabilities. The foundation is working hard on this but if I could help them spread the word it would be great. They also help new parents to understand the disability and welcome them with a gift basket, a symbolic gesture to say that the new parents can count of them for whatever they may need.
After such an interesting conversation our stomachs started making a bit of noise and I was kindly invited to have lunch with Emin, Robert and Erden. There was a whole debate about whether we should have a nice slice of pizza or something healthy. As you may already know, people with Down syndrome can be quite stubborn and once they have an idea in their mind they will not let it go. These two gentlemen wanted pizza and Emin and I were trying to convince them for a much more healthy meal… Guess who won? Not us. Emin proposed to go to the mall where we could find different restaurants and there we were, off to the metro station to go to the mall! Robert was our leader and his mission was to take us there, especially to see if he remembered how to go there since the last time they had gone which was about a month ago.
I had a very interesting conversation on the way with Emin who told me a bit more about himself, his background and how he ended up working with such great adults. You could clearly see that it was important to him and that he really wanted Erden and Robert to really make it by themselves. His English was perfect and it was really interesting to hear what he had done in these last few years. I also told him about my sister, about how she lives alone, goes to work alone, meets up with friends by herself, and we both came to the conclusion that, as he said, “sometimes we put the borders in our mind”. I am not going to talk about every single moment where I really wondered how my sister would accomplish many things before realising that I was the one setting borders to her capabilities. However, I think we should ask ourselves if sometimes, in a selfish way, we over protect people with Down syndrome by thinking that they can’t do it.
At the mall I had a plate of what I guess was a Turkish dish with chicken and pasta and Robert went to have the KFC burger he was craving. It was interesting to see how the turks reacted with people with Down syndrome or how they would look at them as they lifted their arms like a T to cross the road. Safety first! Just like everywhere people would either smile and be helpful and others would not even bother. However, the people in Istanbul are lovely and very helpful. They even helped me with my Turkish and even Erden helped me pick a dish! We were joined later by the other half of the group who had had cooking class. Büşra, the other helper, arrived with Fulya and Emre. Fulya is this smily young woman who just made my afternoon. Apparently very emotional, she couldn’t stop smiling and had transmitted so much good energy that it just made me want to talk to her. People who laugh a lot always make me laugh and I was absolutely amazed by her purple hat with butterflies sticking out!
After the meal we went to have a coffee and I just felt the need to sit next to her. We do not speak the same language but what a laugh we had! Emre was sat on the other side and even though the only words in English he knew were “thank you!” you could clearly see he was interested to talk and learn more expressions! Suddenly they all started taking their phones out and we started taking selfies (I need to ask them to send them to me!). We had a great time and I would’ve stayed a lot more!
Around 4PM we started walking back to the foundation, we also took the metro back, as it was time for everyone to go back home. Emin mentioned that some of them live up to 2 hours away from the foundation but I guess they travel that long because it is worth it! Fulya on the metro pretended her feet were aching so that someone would leave her a seat but we just had one stop. Once we arrived at the station she pretended to fall on the ground to make the other feel bad. Here again she couldn’t stop laughing which automatically made me laugh too. The cheekiness reminded me so much of my sister and by the time we had to say goodbye the only thing I could do was hug each and every one of them.
Unfortunately I had to leave while they were counting the money they had spent during the day (working towards independence and understanding the value of money) but we managed to take a group photo (unfortunately without Erden). You could see that they had had a good time and hugging them made me feel like Home. Strangely enough I cannot tell if this feeling is selfish or not. But those seconds where you hug and you are hugged by a person who genuinely means it mean the world to me and I really hope I will get to see them soon again. Somehow every single person I met that afternoon means a lot to me now. I guess it is because it was the first foundation, because of the smiles they all had, and that I was nicely invited by Emin who took the time to explain everything to me. Having Down syndrome in Turkey is not like having Down syndrome in France or in Spain. However, Down Sendromu Dernegi has a team willing to make things move and who works with the key word of education: inclusion. After this world tour I would like to gather together all the information of absolutely everything and if I could help Robert, Erden, Fulya, Emre, but also Büşra and Emin accomplish their goals in any way I would be more that happy. This was truly an unforgettable afternoon and I will surely not forget those smiles. Teşekkür ederim!