The unused power of Fragile X: A TED talk

We often only see the limitations of someone with Fragile X. And not what they can do. Yet, their special abilities could add tremendous value to society. That is at least the conviction of Emilie Weight, who recently gave a TED talk about the unused assets of people with Fragile X, and other intellectual disabilities.

Emilie is classically French; she speaks with passion and underlines her words with her hands. She recently joined the board of Fragile X France. At the European Fragile X Network meeting I heard that she gave a TED* talk on Fragile X. After seeing the talk on the Internet, I was so impressed and wanted to know more! So, at the meeting I asked her for an interview. We met over breakfast with coffee and croissants in front of us, just before another conference day.

Can you tell something about your family?

My son’s name is Michael. He is 15 years old and a really great guy. We have known that he has Fragile X since he was two and a half years old. So we knew it quite early. He was diagnosed in a special way. My younger sister who was 18 at the time showed symptoms of early menopause. She was diagnosed with FXPOI (Fragile X-Associated Premature Ovarian Insufficiency) and because of this diagnosis we got to know that Michael had Fragile X. We had seen him flapping his hands earlier and he had already been seen in an Autism expertise center. But the doctor had said: “He does not look away when I look at him. So it is not autism…” Brendan – my husband – and I also have a daughter called Lola. She is 13 years old and does not have fragile X. She and Michel get along wonderfully. They are like two peas in a pod; their interaction seems to take place at another level.

Why did you want to give a TED talk?

I always wanted to do this. I like the concept of it. TED gives you a great platform to start debating things. I love controversial ideas and TED talks are full of them. It is always a good thing to question whether we are on the right track with our society and challenge conventional ideas. That is the core of TED talks. As you can see, I am a fan. You can really pick up interesting things from them.

And what was your own controversial thought?

I realised that Michael has brought me an enormous amount of happiness and taught me many things. That thought is opposite of the normal way of thinking in society about people with special needs. Society tends to refer to them as a burden. And for sure, sometimes it is not easy, but a burden? My son has so many special talents; you only have to look to see them. And as society, we can really benefit from people like Michael, and a lot more than everyone thinks. That was the thought I wanted to share. I never quite understood the labelling part of the disability. You know, in the morning of the day he was diagnosed, the four of us were standing in the bathroom. That evening, after the diagnosis, we were all standing together again in the bathroom. I remember vividly that I was thinking: “Hey, here I am and nothing has really changed. We are the same four people in the same bathroom. Why should everything now be completely different? Michael is still Michael and I am still I.

Was the diagnosis not a shock then?

Sure, specifically the first week. In the first week I felt completely lost. The road I was taking was not important anymore, my role in the world was not clear anymore... It was really very existential. I was a career woman, had a good job and had just started working on an international assignment for a large company. I was on my way…. But when the diagnosis came, I immediately realised that this road was a dead end and that I had to choose a different path. I managed to change the assignment and my job to a four day working week. And I started helping Michael.

What did you learn from Michael?

In these first years Michael had physiotherapy, speech therapy, psychological support and occupational therapy. On top of his sports and theatre lessons…. The poor boy’s agenda was completely filled. When I look back on it, I think it helped him to get where he is now, but it was a bit over the top. I really jumped on him and he became my 'Project Michael'. After three years – Michael was six by then – it all became too much for me. Project Michael, the work, I was exhausted and experienced burnout. I ended up at home for a full month. When I was contemplating returning to work, I sat opposite of Michael at the table and was scared. I also said it to Michael, this small boy of six years old. He looked at me and said: “Mummy, you should look at me, how I do things.” I was really taken aback. At that moment I realised that I had to change my views. I had to start living more in the moment, get away from all those fears about things to come, the whole planning thing. That was some lesson from Michael and it enriched my life. Time has become a completely different concept for me now.

Another lesson is that I started communicating differently through Michael, You know, he has this special gift of ‘feeling into someone’. I call it empathy, but actually it is beyond that. He has some sort of antenna for someone’s feelings, a special sensitivity. He feels it when you are stressed or whether you are happy. I think the reason for this talent is rooted in his disability. He sees a human as an individual person without any prejudices or other mental barriers. If he is with an older person, he does not see an old person, but a full human being, he sees an individual person. For us it is incredibly difficult to listen and to look at people without any judgements. This is something I learned from Michael – or rather – this is something I am still learning. When someone was talking to me, I used to be thinking about questions I could pose and all sorts of thoughts were going through my head… I try to turn myself off nowadays and I really, really, try to listen to someone. These are the things I talk about in my TED talk.

How made you give the TED talk?

In my company there was a kind of selection process for such a talk. I thought ‘why not’ and applied for it. In order to apply, you had to write your motivation and make a short movie about yourself. This movie is very important, a TED talk is about how you present and convey a message. My initial movie was not very good; it was put together all a bit last minute, as we were about to go on holiday to Peru.

When we were in Peru at Machu Picchu, I was up in the clouds. This was a city I had wanted to see all my life; it was a dream come true. I said to my husband there and then: “I want to make a new movie clip!” And he filmed me with Machu Picchu in the background. In that movie I tell about the feeling of living my dreams and that – now I had seen Machu Picchu – I wanted to work on my other dream. And I was selected out of all those applicants!

How does a TED talk work?

It is an intense process of about one year. You write and refine the text over and over. TED people also read your text and provide you with comments. They are quite strict: you are not allowed to use some words for example. In the last three months TED people train you weekly via Skype. You have to learn the text by heart and you must be able to present it perfectly. The last phase is quite interesting and intense. You have to, as they call it, ‘unlearn’ the text.

I am French, but I do the talk in English. During the training I had to switch languages at their signs, from English to French and backwards, and back to French again. On command I also had to start using other words for the learned sentences – improvise – and then switch back to the text as I had learned it. And the text was divided in numbered paragraphs. They yelled a number and then I had to do the paragraph. In the end I knew the text upside down and backwards and I was ready to give the talk in any circumstance. The last two days I could practise the presentation in a theatre in London, again under supervision of TED trainers.

And the talk itself?

That is done live for an audience of approximately 400 people. I was so nervous! But as I went up the stairs to the stage, as if by miracle I became calm. It was like a dream…. very special. Even the clock in front of me that was ticking away the minutes and seconds during the talk – the talk is supposed to last no more than 9 minutes - did not spoil the moment. I was really happy when I did my talk there on the stage. I was proud of showing other side of individuals with fragile X, their strengths and how they can help society. These people have assets we do not use, which is stupid. How wonderful it would be if people with fragile X could use their powers and competencies for society’s good and could add value to the economy. In the talk I wanted to make the analogy with Uber, their idea is that they employ unused assets in our economy and I called it uberisation of fragile X. But I was not allowed to use the word uberisation in the talk because Uber is a commercial company. Yet it expresses the idea well: how can these special people with fragile X add value to our society and to our economy?

What was the impact of the talk?

TED videos only go viral once you have generated sufficient views by yourself. The tipping point is 10.000 views and I know I am close. It would be great if more people watch the talk as well. Over 10.000 views and shares would push forward my TED Talk and would then really help to raise awareness.

On a personal level, it was wonderful to do the talk and it helped me to sharpen my own thoughts and ideas as well. For my husband it was not so great… I used to practise my talk everywhere. Even in the shower I was practising. He was going a little crazy… yet he was my greatest fan in the audience during the talk!

And now?

The idea keeps me occupied. I want to bring the idea into practice. As I say in the talk, I do believe that we have to use the strong points of people with disabilities to improve our lives, instead of seeing them as a burden to society. That really is nonsense! And I want to show that the idea is possible. Currently I am working on a business plan for a centre that combines a place to live, work and a social environment for 40 adults with intellectual disabilities. The idea is for them to have an individual personal apartment in a building with collective medical, social and logistical support. These people will work to support older people: visiting them into the institution or go to their home to assist them in living longer and happier in their own environment. The TED talk helps me to promote this business plan to find partners and funding in order to implement a first centre. My dream is to have this first centre up and running in 2019/2020, and then to deploy identical centres in France and later maybe across the border.

* Footnote: What is TED?

TED stands for Technology, Entertainment and Design. TED is a media organisation that posts talks online for free distribution under the slogan "ideas worth spreading." TED was conceived by Richard Saul Wurman in 1984 as a conference which has been held annually since 1990. TED’s early emphasis was on technology and design, consistent with its Silicon Valley origins, but it has since broadened its repertoire to include talks on many scientific, cultural, and academic topics, often through storytelling of very involving speakers. TED conferences with multiple TED talks are currently held throughout North America, in Europe and in Asia, also offering live streaming of the talks. The talk of Emilie can be found on: TED.com (search for fragile X).

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