At the ASSETS Conference in October last year, Kathy Kahl (the DAISY Consortium's Information Systems Engineer) met a very bright and enthusiastic young woman. Kathy wrote to me from the conference: "I am sitting next to an exciting young researcher (Luz Rello) at the SIGACCESS ASSETS conference. She is a Ph.D. student from Barcelona and worked with the developers on the IDEAL Group Reader DysWebxia settings so has a connection with EPUB/DAISY developments." That is how I 'met' Luz. Shortly after I asked her if she would be willing to share her story. Introducing a lovely and lively young lady, Luz Rello …
My "DAISY Story" is not exactly about me – it's more about the incredible people who I have shared with. What you don't share gets lost. Before getting to them though, let me tell you first how I got to know what dyslexia is.
They Don't Know
Never, ever did I imagine enrolling in a PhD program, nor even in my wildest dreams did I dare to consider going to university. Actually, I used to think that I was not going to be able to finish school. I don't know how familiarized you are with primary school failure, it is something complicated. It is like the snake biting its tail, extremely difficult to get out the circle, even if you try, as already your teachers and classmates believe you are inept. Nowadays, my colleagues at my university office think I work very hard. But no, they don't know. It was when I was a kid that I used to work hard: mornings, afternoons, evenings and after.
A Nightmare or a Happy Dream?
Even though I used to work extremely hard the results were sadly always the same: bad grades especially in language and language-related subjects. By that time, I had a recurring dream … well, it was a nightmare … well, it was actually a happy dream. But I was afraid of happy dreams by that time. Let me tell you about the dream. It was always the same. In my hands, I held a white envelope. I knew it well; it was the fancy private school official envelope. I hold in my hands exactly that white envelope, and with bated breath, full of hope and fear I open it. Then, I unfold and see the blue paper with the grades. All the scores were A's. They were so many A's that it was even hard to count them! I felt so full of joy and relief that I start running to tell my parents. And at this exact moment, I am so so so happy that – I wake up, and it is then when I used realized that in real life I was a failure. An overwhelming disappointment throughout the body tears my hope and I start to cry, lying on my bed in silence. At that time, I was afraid of having happy dreams because those meant I would wake up in the real nightmare.
But I kept trying. Although hope for a change became less probable as time went on, I kept trying. I don't know where I drew the energy from. Years passed and I kept working hard, very hard. The most tedious task was copying children's books by hand. Copying was such a mental effort for me that the only thing I can say is that there was nothing that I have done later which I've found more difficult, even writing my thesis.
A Special Room: the Dream Comes True
One day, when I was 12, I had a new teacher and during the breaks, she brought me to a special room where language exercises for children with dyslexia were done. It was fine to escape the breaks – I did not have too many friends and breaks were stressful because I had to find someone who would not mind hanging out with me. The word exercises were pretty boring, quite simple actually. I felt there was no difference. With dyslexia you are never totally certain that what you read is what is written, and that what you write is correct. You can read the same thing correctly the first time and incorrectly the second time. However the perception of your reading would be the same.
That term, as usual, I got the white envelope and when I opened it and unfolded the grade page, there was the list of all A's, exactly the same as I have seen infinite times in my dream. I started to cry desperately and all the class began laughing. I'd started to cry because I knew the school had made a mistake. Life was playing a cruel trick on me. The teacher took me out of the class, having recovered the report card that was ripped out of my hands by the rest of the students. I was crying so hard, the way you cry so that you cannot breathe. Do you know what I mean? And the teacher asked:
» Why are you crying?
» Because you got it wrong with my grades.
» Why do we have them wrong?
» Because I surely failed many subjects.
» No, we are not wrong.
» (More tears)
» No, we are not wrong.
My Biggest Secret
I don't think I believed her completely. Even today I have problems believing academic good news. I kept working hard because I was sure those results could not be right. With time I started to win research competitions, ending up having the best bachelor grades in Linguistics in Spain … ending up with dyslexia as my biggest secret.
After this personal 'parenthesis', to continue the story I was asked to write, I think I should begin by telling you about the incredible people who I met later, and some of the highlights that we have achieved.
Using Knowledge to Help People Like Me
The idea of doing research in the area of dyslexia came from Ricardo Baeza-Yates (Yahoo! Labs) in 2010. Until then, I was passionately doing research in other fields. No one who knew me would have predicted that I had problems as a kid with all that academic success around me. But he did. After some emails he noticed that there was something different with my writing. I had to confess for the first time in many years, and hence he proposed to me that I work with him on a PhD at Universitat Pompeu Fabra. I would use all my knowledge of linguistics and natural language processing to help people like me. He said: "There are very few people in the world more qualified than you to understand the real problems of people with dyslexia". I gave up my plans and started my PhD. It was good advice, and Ricardo was right. He is a wonderful example of someone who is a good advisor, and he has helped me to reach my personal and professional potential. Working on this fulfills me more and more each day and allows me to extract energy and motivation from the ashes. Thank you, Ricardo.
My Research Dream
At the WWW'11 congress in India I met Gaurang Kanvinde (IDEAL Group) for less than 3 minutes. He saw my presentation on dyslexia and came to my table. Two emails and six months later he asked me in an email what was "my research dream". I replied sincerely "to end up with a real tool that would help real people who have dyslexia". To my surprise he replied, "I will help you to make your dream come true". My experiments using eye-tracking with people with dyslexia resulted in a set "dyslexic-friendly" text layout guidelines, and Gaurang included them in the IDEAL eBook for displaying EPUB publications in a more accessible way. And, thanks to this, I got to know the DAISY Consortium when I met Kathy Kahl at the ASSETS 2012 Conference in Colorado while presenting that tool. The eBook reader was a finalist at the Vodafone Foundation Smart Accessibility Awards, and it was there, in Brussels, when I meet the rest of the incredible team behind the eBook reader, Steve Jacobs and Saurabh Gupta together with Gaurang. Thank you, Gaurang.
Another White Envelope
One day I received another white envelope – I could hardly believe – I had won the 2011 Google Anita Borg scholarship to go to Zürich and meet outstanding women in computer science. That is where I meet my friend Clara Bayarri and started to create Dyseggxia, a game with word exercises for children with dyslexia. Since March 2012, together with another friend, Azuki Gorriz, we meet every Sunday to eat pancakes and work on our game. Before long we had decided to call ourselves the Cookie Cloud team. We still cannot believe that our game appeared in the newspapers and on TV, that it has been downloaded more than 5,000 times from the App Store, and that it has been included in the syllabus of centers that support children with reading and writing difficulties. And we cannot believe how many people try to help us. For example, early this year we received a donation from Apps4Android (mobile devices) for research. We are now full of motivation as we finish our work on the version of Dyseggxia for Android. Also, right now, thanks to the help of Creix Centre Barcelona, Dyseggxia is being evaluated extensively at one school in Barcelona. Thank you, Clara and Azuki.
A Happy Dream
It is very common that a child with dyslexia is left behind. Unfortunately, the most frequent way of finding out if a person has dyslexia is due to their poor school performance. But it does not have to be in this way. It does not have to be this way because people with dyslexia have the same intelligence as those who do not. What is needed is the right approach to reading text, and now, texts in digital format make this approach possible. Text can be transformed to be read more easily and with our research we are finding how to do this. This is my current dream and now I really believe it is a happy dream.
The photograph of the interior of the Roger de Lluria building at the Universidad Pompeu Fabra is from the Wikimedia Commons and is licensed under the Creative Commons Attribution-Share Alike 2.5 Generic license, with attribution to the photographer, Sdnegel.
I have no doubt that after reading Luz Rello's story, many of you will want to try Dyseggxia. It is available for free in Spanish and English, and can be downloaded from the Dyseggxia website download page and from iTunes. It is designed for both iPhone and iPad.