On the benefits of Open Access to medical research about rare diseases

May 6th, 2009 • General • No comments

Yesterday, Peter Suber wrote  in the Open Access blog: ‘OA to medical research helps patient families, not just professionals. It’s impossible to argue that OA to peer-reviewed research doesn’t help lay readers’.

I’ve never taken part in the debate about Open Access to scientific knowledge. But I believe that OA is a right for all citizens worldwide. Naturally, the benefits of OA for scientists, scholars, teachers and students are irrefutable. However, there is an ongoing polemic about the benefits of OA for the ‘curious minds’, the general public, just the lay readers. See OA news on OA for lay readers.

In my opinion, access to scientific knowledge is not only a matter of access to peer-reviewed articles in a online research journal. As an educator, I see, among many issues, some related the vulgarisation of scientific knowledge by the researchers themselves. I just think about blogging about research findings or even introducing a section, sort of summary, that completes the abstract of all research articles and that targets the general public so it can be easily and widespread reproduced. Also, from the lay readers’ side, the required literacy for OA: use of centralised OA research engines, selection and classification of sources, use of references… Naturally, the ability to understand  abtracts, (discussions) and conclusions will vary among individuals and depends on each individual’s education.

Many has been said about the reasons for lay readers to access scientific knowledge. I want here to give my personal reasons. Open Access to medical research about rare diseases is a fundamental right for all citizens worldwide. It is outrageous that still in 2009, patients and patients’ families, and specially those who suffer from a rare disease cannot access all medical research online and for free.

In my case, I will not understand it all. I will not become suddenly, by reading a research article, an expert of the area and solve my daughter’s problem, transforms myself in a doctor or a surgeon, but by accessing OA medical research I certainly can:

• Identify national and international experts, including research units, laboratories and health care centres that I can contact,
• Have a rough idea of the state of the art, including:
  • the range of materials, methods of interventions and treatments, including recommended operative techniques,
  • the innovations in the field,
  • better understanding of the results and complications, including mortality rate and psychological effects,
• Increased awareness of reputation and expertise of doctors I may contact, but also a better assessment of the treatments suggested by the doctors I’m in contact with.

While writing this, three provocative thoughts come to my mind:

• Can lay readers assess quality?
• Do doctors want patients to be informed?
• By giving to lay readers, in these case patients and theirs families, OA to medical research are we changing traditional power structures related ownership of knowledge and shifting locus of control from doctors to patients?

I feel in the mood to go further and say that even commercial academic publishers should guarantee OA to medical research for patient and families with a disease, rare or not. It is vital for us and it is also a public good.

I finish by quoting the first paragraph of the Budapest Open Access Initiative

An old tradition and a new technology have converged to make possible an unprecedented public good. The old tradition is the willingness of scientists and scholars to publish the fruits of their research in scholarly journals without payment, for the sake of inquiry and knowledge. The new technology is the internet. The public good they make possible is the world-wide electronic distribution of the peer-reviewed journal literature and completely free and unrestricted access to it by all scientists, scholars, teachers, students, and other curious minds. Removing access barriers to this literature will accelerate research, enrich education, share the learning of the rich with the poor and the poor with the rich, make this literature as useful as it can be, and lay the foundation for uniting humanity in a common intellectual conversation and quest for knowledge.

Asymptomatic sternal cleft: is the repair necessary only for aesthetical reasons?

May 5th, 2009 • General • 1 comment

Contrary to what I’ve been told so far, that in the case of asymptomatic sternal clefts, a surgical intervention was recommended only for aesthetical reasons, I’ve found two articles on sternal cleft surgery stating that sternal clefts should be corrected and giving a series of indications beyond aesthetics.

These articles also outline the importance of addressing base by case, as sternal clefts, with r without ectopia cordis, represent a rare clinical entity:

and also, more detailed:

When I read this, two indications worry me “Enlargement of the defect over time will worsen in appearance and make it more difficult to correct” and also “paradoxic respiratory movements of the chest induce dyspnea and presispose patients to recurrent respiratory infections”.

I wonder then, why the doctors affirmed that leaving unrepaired Priel’s sternal cleft would not have any consequence in her future development.

Dr Alexander Fokin is the author of the first fragment cited here that comes from Alexander A. Fokin and Francis Robicsek, Management of chest wall deformities in Advanced therapy in thoracic surgery, Kenneth L. Franco, Joe Billy Putnam, Robert S. D. Higgins, J Sanchez, PMPH-USA, 2005, 548 pp. He is also cited as main reference for his classification of indications for sternal cleft repair in: Michael J. Sundine, Treatment of sternal clefts in Reconstructive Surgery of the Chest, Abdomen, and Pelvis, Gregory R. D. Evans, Informa Health Care, 2004, 473 pp.

Access to scientific information and support about sternal cleft: comparison of three sources

May 3rd, 2009 • General • No comments

As explained in Sternal cleft: repair or not repair? Mother’s questions to a scientist, I’m presently looking for scientific information and support to make an informed decision about the surgical intervention for aesthetical reasons of my 3 years old, Priel.

I’ve launched in parallel 4  methods for doing so:

• I’ve written, as I did almost 4 years ago, a post in English with a list of questions and a invitation for testimonies of parents and patients about their experience of (upper) sternal cleft. I have also, after reflection, posted two public photos of Priel. The majority of photos found online of upper sternal cleft come from medical archives and are not pleasant to see. In Priel’s case the cleft is very mild, it does look strange and every person who meet her remark either the gap on her chest or the way the air fills this gap when she breathes, but specially when she laughs or worse, cries.
• I’ve twittered about it, 3 persons retwitted  and I received an concrete answer offering help from a doctor in Oregon:

• I’ve reposted my blog post in TwitterMoms: http://www.twittermoms.com/forum/topics/sternal-cleft-repair-or-not
• I’ve used the traditional search for information method via the Directory of Open Access Journals and the Custom Google Search in the Open Science Directory. The first, gave me 4 links to medical articles. The second, more than 100 links to medical articles, the majority of them in closed databases. Each single article will cost $25-$40.  Cannot agree more with Open access and the price of knowledge. I still have to review these articles and cross fingers to find a literature review of upper or superior sternal cleft in a Open Access Journal. Dreams costs nothing!

These efforts will be completed by a post in French with questions addressed to the persons who contacted me during the last 3 years: two parents of toddlers with sternal cleft and a young woman whose sternal cleft was repaired in 1987. Let’s see which methods give the best results: self-search vs personal network?

Update 5 Mai 2009:

• No answer to my post in ‘the influential moms network’ Twitter Moms.
• Two persons retwitted: @NergizK and @Cristinacost, women and not of the egotwistical kind
• One doctor contacted me via Twitter and asked me for complementary information in a direct message
• I’ve surfed all the sources that came up using the Custom Google Search in the Open Science Directory: none is free access. However I found two excellent books of chest wall repair which text is partially accessible via Google Books.
• I’ve found two articles in free access via the Directory of Open Access Journals. I still have to read them.
• After preliminary readings on the subject, I contacted by mail Dr Alexander Fokin, who seems to be a worldwide expert in sternal cleft deformities and their repair, with my previous list of questions.

Sternal cleft: repair or not repair? Mother’s questions to a scientist

May 3rd, 2009 • Pourquoi ça n'arrive qu'à moi? • 3 comments

4 years ago, few hours after her birth, I discovered that my daughter had a sternal cleft of the upper third of the sternum*. I’ve collected all possible sources accessible to the general public and prepared an information sheet for parents like me, asking for questions not answered by their doctors: Quand une maladie rare frappe à notre porte .

At the time, the references in the articles put me on the trail of Professor Padovani, now retired surgeon of the Hopital des Enfants Malades, Necker in Paris, see Sternal cleft: Case report and review of a series of nine patients. I’ve seen him once in 2005, for 10 minutes, along with Professor Glorion who is the chief of the orthopaedic surgery and paediatric traumatology unit. It was like seeing the president – very short and straight to the point – no time to waste here.

I’ve been there three times:

• October 2005: Sternum may grow during the first years of life. Let’s see her sternum development in one year.
• November 2006: Sternum is growing slowly. Let’s see her sternum development in two years.
• May 2009: her sternal cleft is still visible, but is not one unpleasant to see. Could be worse, couldn’t it? The choices are between letting her grow up adult with a gap in her upper chest, a gap that fills with air like a frog or a bird, when she cries or laughs. Or going for a sternal cleft repair, by approximating the U-shaped sternal defect, that leaves a vertical scar. It needs to be done soon, this autumn, while her bony thorax is still compliant.

Today I feel as if everything were starting again. Alone with no answers, not knowing what decision to take. With no time to ask all the questions I wanted. Feeling like disturbing the big scientist who gave me enough time already. Many other children are waiting in the corridor to see the Professor. I have to leave.

Today I’m upset. I don’t have elements to make an informed choice. From what I understood, approximating the U-shaped sternal defect is something like opening the chest vertically, sewing bones together, and closing the chest. But nothing of this was explained properly to me. I guess because a lack of time or because I’m parent, not a doctor. This is not parents’ business. Doctors decide what to do and we, patients, have the freedom of accepting or not. But no one sits near to you and explains the state of the art in the field, reviews the variety, if any, of surgical methods for sternal cleft repair, and gives advice.

The uncomfortable position I find myself in is one of deciding a surgical intervention for aesthetic reasons on my daughter. After all, is her body, not mine. Why do I have to decide how she will prefer to live? Would she prefer to live with the defect or with a persistent scar? Will she always hide her neck, wearing longs necks and collars? How will she feel, with her naked body, when making love for the first time? These are not doctor’s matters.

If you as a scientist, drop by this post, please help the mother and explain me:

• What are the different methods for sternal cleft repair?
• Are there alternative methods that do not leave a vertical scar across neck and chest, but a horizontal scar?
• Is there any method of intervention at a later age that will allow her to participate in the decision making process?
• If this is the only method to repair, when her bones are sewn together, will the thoracic cage have the same amplitude?
• Does it hurt and how long after the intervention patients suffer?
• How long it takes to fully recover and not to be in pain?
• Will she be able to move her shoulders back fully? Will she be able to play sports?
• Are there photos that I can see of the results an intervention like this?
• Are there any testimonies of other patients on the quality of life with a sternal cleft and with a repaired sternal cleft?

*Sternal cleft is a rare congenital anomaly resulting from a fusion failure of the sternum

In the following photo from the case report Primary repair of a sternal cleft in an infant with autogenous tissues , by Sinasi Yavuzera and Murat Kara, we can appreciate a young girl before and after the intervention:

Flickr: I’ve unpublished 190 photos of my children today!

January 12th, 2009 • Pourquoi ça n'arrive qu'à moi?, Technologies sociales • No comments

Today is the last day a pic of my children is made favorite by a perv. There are plenty of photos of them in my collection. But from now on, they are public only to my friends and family.

You may also want to check The Privacy of Our Kids in Flickr, an art project using children
imagines deliberately published by parents under CC by, SA, NC.

Faces of identity: which you do not make visible online and why?

January 10th, 2009 • Au fil des rencontres, Moi Numérique • 1 comment

During the Eduserv workshop on digital identity pattern design, at the British Library, we have been invited by Yishay Mor and Steven Warburton to warm up and socialize before team work by doing a sketching exercise, called ‘Faces of identity’. (For more on patterns see the JISC funded project: Planet – Pattern Language Network for Web 2.0 Learning)

They gave us three head outlines to draw three different representations of our identity. Then we had to turn them to our group and present them, answering the questions: ‘Of these three identities you have drawn, which do you make visible online online and why?’. And also, ‘which you do not make visible and why?’

This last question drove us to a space where each of us unveiled some aspects of the hidden rhetoric of our digital selves. We then shared our experience about online identity management: swearing versus non swearing spaces, consistence of icons and gravatars, negation of some aspects of our life that we feel may impact our public presence, including our ‘employability factor’  or aspects from our personal life that interfere with our professional life.

Soon we all found that we had a face of our identity, mainly built in relation with others, that was hidden or somehow protected by some reason, say, safety.  Many stories came together in this exercise: Josie negating her motherhood identity for job search purposes, Phil protecting his children by never putting their image or their names online, Sally questioning herself about how their children may contribute to her online identity, and me controlling social interaction to some of the public images of my children.

I really enjoyed very much this session and felt that we were a highly productive team. We produced the Putting others first pattern. For this very reason I want to tell who these people are. And I hope I will have, in the future, the opportunity to work with them again.

5 people worked during the morning session presenting their stories, linking them, finding similarities and identifying the problem space. These were (from left to right in the drawing by Maisie Platts)

• Phil Archer
• Finbar Mulholland
• Margarita Perez Garcia
• Josie Fraser
• Sally Griffin

After lunch, Mark AM Kramer and Jim Hensman joined the group and we produced the pattern all together.

A pity that the patterns repository doesn’t give ownership to the entire group. However, if someone has to be held responsible for the words on the paper, then let’s say that Phil Archer was responsible for this!

Selected participants in the MUVEnation programme

December 31st, 2008 • MUVEs • 3 comments

Back in October 2008, we were overwhelmed by the number and quality of the applications to the MUVEnation peer to peer learning programme. Although our initial plan was to accept only 80 practitioners, we decided to admit +200 participants from around the world and carry out the selection process based on their participation activity during the introductory module of the programme.

We have now finished the selection process. The high rate of effective participation made us reconsider the numbers. And we have have admitted 107 active participants, from 26 different countries. 80 of the participants are based in Europe. 27 are across the world, from Argentina to Australia, from Jamaica to Israel, from Venezuela to Morocco. Leading countries with the higher number of participants are Spain, Italy and the United Kingdom.

We will be further exploring the use of virtual worlds for education from January to June 2009. And working together on the following areas: analysis of teachers needs, competency framework for the use of virtual worlds in education, commented collection of educational tools in Second Life, exploration of other virtual worlds, Sloodle, narrative analysis of teaching practices including the analysis of factors that impact their success, elaboration of learning patterns connecting RL educational challenges to virtual worlds scenarios, and the validation of these scenarios by concrete implementations inworld.

I’m also a STARR: Tell me whom you walk with and I’ll tell you who you are

December 29th, 2008 • Moi Numérique, Moi-Je par soi-même, Pourquoi ça n'arrive qu'à moi?, Technologies sociales • 7 comments

In the field of the Eduserv workshop on digital identities, the 8th January 2009 at the British Library, Steven Warburton and Yishay Mor invited us to share small stories in which we are the main character (or at least a first-hand witness), and which we believe illuminates an interesting aspect, or dilemma, of digital identity.

A few have been collected already : about disaggregated identities, about the pressure of existing within a Twitter community, about students hands-in-hands friends in FB with teachers, about the impact of an online identity in online job search, and also about the exposure of a teenager photo by a counsellor without a full understanding of of CC licences. Yishay also prepared a short presentation that provides guidance to the task with the STARR template.

Dime con quien andas y te diré quien eres!

And because, I’m also a STARR, here is my story: Dime con quien andas y te diré quien eres! This is a Spanish saying my mother repeated me to death when I was a teenager. Literally translated into English, it will be: Tell me whom you walk with and I’ll tell you who you are. But the saying translated into another form would be:

• Hunt with cats and you catch only rats
• Birds of a feather flock together
• A man is known by the company he keeps

S/Situation

I have a Flickr account, since 2004. I have always used for both personal and professional aspects of my real persona. I also have a Flickr account for my avatar, Paz Lorenz, since 2006. I use sets and collections to separate personal and professional content. But also to separate different parts of my personal life. I don’t want my self-portraits mixed with my kids. In this first account, I haven’t really engaged in rich conversations with other Flickr users. I didn’t feel the need to complete my profile, I have only 33 contacts, most of them real life friends and belong to a few groups, mainly related with spontaneous and brutal art. Opposite to Paz who maintains a richer social life and spends her time flickering.

My accounts are frequently aggregated by other users who make me their contact. Some of my photos are added as a favorite, and commented. As a consequence, a part of me is automatically added to other people’s profiles and photostreams: I appear in the list of contacts of a given user. My photos appear in the users’ favorite collection, associated, out of context, with other photos, according to a criteria I don’t necessarily perceive or understand.

T/Task

My problems started with a photo that my older son, Sariel, took of me, while breastfeeding my newborn Forest. In one year, ‘Happy breastfeeding’ was seen 3,464 times. My photo started as a project against people who complain because of breastfeeding in public places, after two awful encounters where I’ve been told to ’stop doing that there”, even though it was discrete and I had a scarf over the head of my one month old baby.

As an answer, I wanted to replicate a photo of another Flickr user that unfortunately isn’t public whose title is ‘For you pervs out there. . .’ In this photo a mother of a toddler is breastfeeding her child, while she gives ‘fuck you’ sign straight to the camera. The photo, as many other of the kind, is published in the Go fuck yourself Flickr group. So I wanted to do the same: nurse not so discreetly while looking straight into the eye of those people who condemn breastfeeding in public and be rude and angry. But this was impossible with my little clown taking the photo. We couldn’t be serious and didn’t help but laughing out loud. And the result was this:

Since, the photo has been marked as a favorite by many ‘pervs’ who maintain fake Flickr accounts where they do not post any photo, but where they collect other users photos showing nudity, partial nudity like mothers breastfeeding showing part of her breasts or children without Tshirts playing in the nature by a hot summer. Suddenly my photo and I appeared associated to pornography, among the contacts and in the collection of users who are also member of ‘Mature women nudes’ and ‘Delicious oral sex’, just to cite the less offensive groups.

A/Action

When I realised that this was happening, I defined a personal rule regarding my content in Flickr: to block any contact or fan of my photos who is associated with pornography: publishes porn photos, belongs to porn groups, has porn favorites or invites one of my photos to a porn pool.

R/Results

I systematically monitor accounts of people who establish any virtual relationships with me in Flickr, and if not compliant, I block.

As a consequence, and to remain those who do not know how blocking functions in Flickr, these users:

• Can’t comment on my photos (All comments on my photos made by them are deleted)
• Can’t comment on my sets (All comments on my sets made by them are deleted)
• I am removed as theirs (They can’t add me as a contact again)
• Can’t add my photos as favorites anymore (Any of my photos marked as their favorites are removed)
• Can’t blog my photos
• Can’t add notes or tags
• Can’t send me FlickrMail

This obliges me to follow up my social activity closely, as I don’t want to be associated or to have my 4 kids associated with these people. Naturally, I could have set my collection to private contacts or friends-only. But I don’t want this. I want a public collection of photos. And ‘Happy breastfeeding’ is my provocative public statement on breastfeeding.

Not directly related, I also don’t tag my children’s pics, so they are not overexposed. And the titles in general are name+date. I changed most of them to be only accessible by contacts and left only the portraits for the public eye.

R/Reflections

The main realisation was that there is a time consumption issue associated with the management of private-public content on the Internet. Most of the mothers who put their children photo on Flickr are subject to this kind of problem, and yet one faces a dilemma between restricting photos to friends only or deploying strong policies for control of interaction around one’s images. Hence users develop their own strategy to control these issues, like:

• using FlickrMails in a chain between mothers to investigate the good intentions of a certain Flickr user. Followed by massive blocking and reporting abuse.

• using one’s profile to explain what type of interaction policy is suitable for one’s account. Like another of my contacts who states in her profile:

“my pics tells about love and sharing,
proximity between parents and child, nothing sexual in it i precise!!!
i DO NOT wish my pics to be added as favs on people’s account who are looking for erotic or porn aspect , neither be added as contact
i am therefore very happy to share my pics with people respectful to that opinion,
motherhood is pure…
thanx!”

I became more aware of certain threats that have an impact on my digital reputation. The ENISA Position Paper No.1 Security Issues and Recommendations for Online Social Networks was an enlightning read that increased my understanding and awareness of these issues.

The story of my first Bot or ‘Voorst: a forest trapped in a crow!’

November 27th, 2008 • MUVEs • 4 comments

This is the story of Voorst Turbo and how he became a Second Life Bot. I created Voorst because I wanted an ALT to live again, with new eyes, the experience of my first steps in Second Life. I wanted to be a male avatar and for name I’ve taken Voorst, for my son Forest, and Turbo for the speed of my life.

My motivations come from the difficulties of setting up a group subscriber, for closed groups in SL, that sends automatic invites to people who ask for membership. Actually, what I wanted was a procedure to send out group invites to verified Moodle users, so as to recreate somehow Moodle groups inside Second Life groups. I contacted Daniel Livingstone who introduced me to Paul Preibish (Fire Centaur) who suggested me the use of a Bot:

‘I too use a Bot to accomplish automatic group inviting (You’ll find her on my Island English Village, her name is EnglishVillage Robonaught). I programmed her using the basic examples from libsecondlife.org. (using Mono), and she lives on my server (and in SL). When someone clicks on a “join group” button in SL, the prim sends a specially formatted message to my Bot, and my Bot (who is an officer in the in-world group) sends a group invite to that person automatically. In addition, I could theoretically program her to automatically insert the users name into the mysql db at the same time, so you could display the Inworld group membership on your website. There are several scripts on SLexchange that already offer this sort of service’

So a Bot? It looked quite challenging, but I decided to give it a try. Here is what I’ve learnt:

• What is a Bot? a Bot is a Second Life citizen that is used by his or her owner to perform machine tasks inworld. Or better: A Bot is a SL citizen who is driven by a machine and not by an human being. Some call them ‘non-human players’. A Bot is an avatar: looks like any other avatar inworld, has an avatar name, has an avatar profile, can participate in a conversations and perform several kind of tasks like sending IMs, TPs, inventory items, invitations for a group…

• What are they for? A Bot can be used for several things: for maintaining presence inworld, increasing traffic statistics, appealing audience (pole dancers)… But also to perform automatic tasks inworld, like, in our case, sending invites for closed groups after a membership request.

• How can we make a Bot? This is a two steps process. First you need to create an account for the Bot, then you need to buy the little piece of software that will control the Bot. In my case a bought The JVA multi-purpose Bot for sending group invites to MUVEnation participants for 7 groups at the same time. When I installed the Bot manager in my computer, Paz went inworld for rezzing the Bot base and its utilities like the group subscription and the mailing list. Paz made Voorst officer of all her MUVEnation groups and positioned the Bot base where she wanted. Once the initial set up finished, Voorst went inworld to decide about his appearance. And after all the coming in and going out necessary for final tweaks, I connected the Bot software and Voorst appeared at the same time that Paz, inworld. Magic!

Setting Voorst has been finally easy. I was prepared for a very complicated procedure, but no. The only tricky thing was the logs in and out between Paz and Voorst. For example, Paz had to log in for making him officer of the groups. Then he had to log in for accepting. Then Paz had to log in for giving him money to buy an avatar. Then Voorst logged in for trying out. Phew! I have never launched my viewer so many times during the same day! And forcing SL to close via the task manager. And restarting the computer as well!

On the anecdote side, I can tell that Voorst wanted to become a non-human avatar, a wolf for instance, and forced Paz to buy him a new brand skin for 4000l$, in Lost Ferals. After expending all the money, he wasn’t happy with his new skin and started to beg for money again: to StevenW, to Daffodil and also to Daf. StevenW gave him 20l$. But it wasn’t enough. So Paz had to return for another 1000l$. And again Voorst for trying out the new skin. And then Paz for setting the base. And then Both!

Some spare thoughts:

• Becoming a non-human avatar with a robot, machine or feral animal skin appears like an appropriate solution for Bots, so people get less disrupted and don’t start speaking with them as if they had an human player behind them.

• Now that I know that Voorst lives 24/7 inworld, because my computer is acting like a server, I feel the pressure and struggle when shutting down my computer.

Finally some useful links about Bots in education: [SLED] What kind of Bots do you want for education? initiated by Fire Centaur as well.

Last but not least a stolen story from the MUVEnation forum, written by Sus Nyrop about Voorst, Paz and me:

The raven Voorst is now helping Marga with certain registration tasks. I saw the two of them, Marga and Voorst late yesterday night, but apparently they were very busy and logged out before I could learn more about how this Bot was created and set up.

I looked up the name, Voorst, and the ethymology is Prince in Ducth (a village named Voorst, as well as a musician).

Perhaps Dutch princes have this power over their owner, but I was puzzled about Marga’s report from setting this up (see this in another thread written today), as she explains how the Bot was demanding a very costly skin - the creature was described in rather independent terms.

I did not get any closer to understand more in detail, about what it takes to set up súch automated systems. The Bot appears to be a real avatar, so naively I was offering my friendship, as a usual procedure whenever I bump into MUVEnation inhabitants.

Marga, Lawrence, I think ”setting up a Bot” would be an eye opening training session either as a witness to the process, or hands on doing it –  maybe as group work, and others have given sign of interest. Perhaps later in our course, if not soon?

I am looking forward Sus!

Twitter, à force d’en boire, ça me gave un peu quand même!

October 28th, 2008 • Technologies sociales • 1 comment

Ce billet fait suite, avec 10 mois d’intervalle, à Twitter! je ne boirai jamais de ton eau et pourtant…

Ce soir, un tweet d’un contact the Cristina Costa m’a attrapée dans On twitter: par D’arcy Norman ‘I deleted my twitter account. After posting almost 11,000 tweets over a year and a half. And I don’t miss it. I don’t regret it.’

Tout comme D’arcy, moi aussi j’ai envie de passe à l’acte, de tout virer. Basta, fini les tweets. Fuera de mi vida Twitter! Mais j’hésite encore.

Au fil des mois, Twitter s’est développé comme une fenêtre ouverte sur mon quotidien. Pour chuchoter que je suis fatiguée d’être mère, d’être seule pendant la semaine, de galérer à mort, de ne pas avoir le temps de moi. Comme si soudain, une audience virtuelle m’accompagnait dans mon train-train de tous les jours. Une fenêtre ouverte aux doutes, aux peurs, à la culpabilité, à la revendication de mon statut de mère de famille nombreuse et professionnel à temps complet, qui se bât, seule, contre la folie, le suicide, l’abandon ou la fuite. Le tout, en beauté, minimaliste, sobre et fragile: je n’ai pas envie d’agacer ma communauté. Encore moins que quelqu’un des services sociaux se pointe à ma porte en m’accusant de schizophrène perdue dans la reconstruction délirante d’un monde sans bruits, ni cris d’enfants.

Aussi Twitter m’ouvre la voie de la veille aléatoire. J’arrête d’ouvrir mon agrégateur de fils RSS. Je me laisse dire ce qu’il y a de bien à lire. D’autres filtrent pour moi. En plus, mon moi social trouve aussi un moyen d’action pour le bien commun. Je partage nouvelles, trouvailles et astuces. Je suis utile à ma communauté. Twitter c’est bien. TwitterFox, trop cool. Et je m’amuse à agencer des canaux de communication de groupe pour mes projets: http://twitter.com/mvn08 et http://twitter.com/rhiz08 Le max!

Mais Twitter aussi est prise de tête. Et j’en ai ras le bol des moi-je du micro-blogging:

• des hyperprésents: « Morning Twitterverse! », tweet, tweet, tweet, tweet, tweet, tweet, tweet, tweet, tweet, tweet, tweet, tweet, tweet, tweet…
• des ‘egotwistical’ de l’egobranding à outrance: “Again another blog post by ME”, “Look at my fantastic presentation in Slideshare”, “Download my last article!”, “My project is just what you need”, or “Googlescholar me and you’ll find that I’m a reference in the subject”.

J’en ai surtout marre de la culture de l’apparence, de Twitter comme pince recourbe cils du moi numérique: suis-je belle? et vous?