Let’s talk about #DownSyndrome

I have been working on a research project. The PI approached me because she needed someone that could do some digital story-telling. So, here I am trying to figure out how to put a rather specific research question into a compelling communication project. Something people would want to know about.

The project is about dementia in people with learning and cognitive disabilities, specifically Down Syndrome. A massive topic I would say. Dementia: hot topic; Down syndrome: complex topic.

A first step to understand how to communicate is to understand what is that will be communicated. So I started researching dementia AND, separately, Down Syndrome. I wanted to understand the sentiment, the tone, the feelings towards each of them. What campaigns have been run to raise awareness on dementia? Are there campaigns to support or raise awarenes on Down Syndrome? What are the tones?

Firstly I approached colleagues in the Film and Media Section of my department to know if there is any literature on the stereotyping of the person with Down Syndrome and if they had ever read anything about a sitcom (cannot recall the name now!). Then I thought of turning to what I m most interested in: social media. Twitter is the fastest and easiest avenue of research and I undertook some sentiment analysis of the campaign #DownSyndrome. I randomly selected over 2000 tweets to perform an initial sentiment and frequency analysis. And here came the surprise.

What have I noticed? 70% of the tweets were very positive. Overwhelming correct? Sure. Then I went into the remaining 30ish %. There emerged a little sarcasm (see the picture).Picture1

 

The sarcasm couldn’t really be analysed with the code so I have looked a bit closer to the tweets I had downloaded. There emerged a completely different matter. The sarcasm was not directed toward the campaign or the person with Down Syndrome; not toward other people that had used the # or the issue altogether. A quarrel between those that had associated the #DownSyndrome to the #proLife and those that had, instead, associated the #DownSyndrome to the #proChoice. The tweet that unleashed the angry tweets was a link to this video.

The discussions therefore moved from the person with Down Syndrome (actor) to a much more complex issue: the right to choose whether or not a person with Down Syndrome shall come to this world; the right of the mother, the right of the child. And the tweets were rather hard core, accusing one another…losing completely sight of the issue at stake: the awareness campaign.

Of course, the positive tweets also offer very interesting insights; following upon Van Gameren-Oosterom research on the stereotyping of the person with Down Syndrome, the positive tweets certainly meant good but tended to portray a positive, smiling child, when the reality might be a bit different.

Therefore, a series of questions arise. Are we stereotyping a segment of the population that has never really been the centre of much media research? Are we using one issue (in this case an awareness campaign) to bring forward other battles (i.e. prochoice or prolife discourses)? If so, what are the scenarios that we must consider when communicating to the world that given the life expectancy of people with Down Syndrome has now reached (and exceeds at times) the 70 years of age and this under-researched segment of the population will need to be made aware of the issue of dementia?

 

CJ “RE-Classification” Project

In 2006 geographer Keith Yearman launched the “Juarez Declassification” Project aimed at showcasing the attempts to make the issues of feminicidios disappear from national and international agendas. The project contained cables from US and Canadian Embassies with regards to the “bodies found dumped” in deserted areas in the city. The project was dismissed and abandoned.  There have been other attempts to merge computation, statistical evidence and the issue of feminicidios in CJ; an example could be the project “Lucy Project” a Phd project that tried to gather information on the missing girls in Ciudad Juarez and offer a platform that could be used to report and denounce women disappearances and murders in the city. Machine learning and computation met again with Ciudad Juarez with various attempts to link the presence of gang graffiti in the city and the drug routes. All of these have been either abandoned or have lacked in-depth understanding of the city and its inhabitants.

The idea of the “CJ RE-classification project” is not to reinvent the wheel but to archive what has been done, over the years, to denounce, report and put an end to the forced disappearances and violent murders of women -and girls as young as six years old- in the city. The aim is to gather evidence: if it is not possible to know how many, at least it is possible to know how much effort has been put into the making and breaking of feminicidios. If in fact on the one side mothers march to know who is taking responsibility, on the other academics and researchers have accused feminicidios to be “myth”.

Rather than dismiss the various positions and privilege one view or truth over another, the idea of the project is to put everything in one place an understand the narrative, the breadth and depth of the issue and the ways in which the issue has been narrated (either to make it a “myth” or a major problem the city has been dealing with for over two decades).

After two years of building the database and structuring the information scattered online with regards to feminicidios in Ciudad Juarez, it has finally been possible to create a Google form directly linked to a SQL database (no chance to access the DB from the form though so info is safely stored). The form allows to upload documents such as pictures, videos and even audio files (for podcasts that are not already shared online). These will be identified with a unique ID and will enrich the already rich database. The layout is very basic but it does the job.

Screenshot 2017-08-30 08.55.27
Form

What is the purpose of the database? It was born as a way to record and analyse the image narrative around feminicidios in CJ. Little by little it turned into a necessary archive of information and multi-media material that could record, in one place, the scattered information on feminicidios in Ciudad Juarez. Thanks to the contribution of various activists and friends, it is growing and it has come to include academic papers, conference proceedings, university projects (such as google maps that visualise the number of bodies found in specific locations or years), podcasts, and much more.

The internet offers a rather rich repository of images and audio visual material, “clues” (Eco, 1984) that can inform on the efforts that activists, feminists and families of murdered and missing women in Ciudad Juarez have put in making the issue of female homicides and disappearances visible.

Why a database if the Internet already offers a lot of information? Because no machine learning algorithm will be able to cluster and make sense of the complex narrative associated with the issue and offer some statistical significance to a problem that has never been quantified and has always remained a very local and localised tragedy.

Anybody can submit the form and contribute to the database, which already comprises of over 5,000 between academic papers, pictures of protests, newspapers articles (mainly online newspapers), videos and a couple of podcasts. But we can always do more!

Screenshot 2017-08-30 09.03.24
Image correlation analysis

 

To contribute information and keep on enriching the database, please fill in the FORM.

Emerging connections: the affinity map

Last night the ENAC (broadly speaking, the Faculty  of Architecture at the Swiss Institute of Technology in Lausanne) had the pleasure to reflect on their own collaborative networks. Through the realisation of a bespoke project named “affinity map” realised by my friend and colleague Dario Rodighiero , the ENAC had a first touch-and-feel of how their policies of collaboration and mutual support have (or have not!) worked.

Dario’s main objective is to “make the invisible visible”. In times where data and big data pressure businesses and academic alike, Dario’s tool is inspiring; it has certainly forced each component of the map to reflect on their own work and behaviour. We can picture some relieved faces of lecturers and researchers (“yes! I have loads of connections!”) and some others a bit more ashamed. The affinity map is based on the process of gathering and meticulous organisation and display (visualisation) of ‘messy data’, coming from people’s work. The map is much closer to reality than the shiny world of Data Science wants us to believe for we deal quotidie with messy data.

 

 

The affinity map showcased last night makes us rethink:

  1. Governance
  2. Performativity

Governance

One way or another, we tend to be under pressure; we need to collaborate. Before, colaboration would very much be interpreted as weekly meetings with the team at work, monthly meetings with the division and perhaps Christmas parties with the company/institution. Now, collaboration is becoming part of KPIs and most certainly, there is no project and no institution that doesn’t strive for the best possible results through collaboration. We are being asked to collaborate to win prizes, collaboratively review RFPs, submit inter-disciplinary and collaborative research proposals to increase our chances to win etc… Yes, we are under  pressure, and changing the habit of ‘pretending to collaborate’ to a habit of ‘true collaboration’ is tough.  There is very little knowledge on how to monitor collaboration. Dario’s visualisation, hopefully, will become a useful tool to understand the full extent of collaboration and, also, understand how it also translates into efficiency and competitive advantage. It might sound scary but, willingly or not, we have embraced business logics of efficiency, exposure and global reach.

 

Performativity

How can data perform a new reality? This question is far from clear. However, what we see in this very quick and simple video isn’t only the translation of some very complex data into a nice dataviz project; it is also a whole new way of understanding the working of a small world, a lab, an institution or a company. The lack of collaboration or the wealth of networks of collaborations are translated into an algorithm that codifies the institutions’  ‘willingness’ to collaborate. The tool is performed through data; the academics’ were forced to look reflexively into their own practices. The affinity map certainly raises tough questions and it certainly brings up possible discussions on the discursive formation of collaboration and can have unknown -disciplinary- consequences (more policies?).

Networks of academics, their works and their networks of supervisions is a fascinating matter that opens the door to reflections over the impact of such a tool on universities’ research and teaching frameworks and policies, on governance and, most certainly, on the ethics of transposing collaboration and inter-disciplinarity into an eye-catching visualisation. All in all, a pretty awesome job