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?


Networks: analysis not ontology

First of all, I lost my password and couldn’t retrieve it (thank you wordpress for blocking me every time!) and it s been hell because wordpress sends me dead links to restore the password. Anyway, enough of my personal life. The title deserves attention and so does the topic I want to discuss or address (or simply write about).

There is a growing attention towards network analysis and mapping; flashy (sort of) tools have been developed and are still developed in the world of “digital sociology”. I was somewhere recently; some students presented themselves as “digital sociologist”; apart from the enormous respect (and genuine envy I suppose) I have for those who dare call themselves sociologist after a degree or a master (are doctors ever -or worse, always- doctors? but this is another story) I want to focus on the stress I have picked up in some contexts, literally, the stress of squeezing theoretical frameworks into tools developed to “map” the net.

Do we have to squeeze our theoretical thinking into the capturing of relations as happening online? I haven’t got an answer of course; the question is problematic. We are in a situation where new media are becoming old and where words are moving away leaving space to images; we live in a situation of short lived ideologies that must be taken into consideration not in terms of how they can be seen as co-word or co-occurence phenomena but in terms of specific digital phenomena not suitable for old “digital sociologists”. At the same time, I would say that the idea that the link will be the constant of the web is wishful thinking. The constant will be the code; try get a short link to work after some time!

But also, how about the idea of emergence in relation (or vicinity) to epistemology and ontology? It took me four years and loads of readings to understand where the difference stands and the discourses around the two. If we talk about a network, aren’t we talking about something that -although recognising the difference between epi and onto- tries (attempts, strives) to overcome the difference and see how the idea of the network can point at a socio-technical imbroglio, a human-non-human quasi-cyborg dimension?

I like the idea of looking at the inner differences of Facebook and Twitter, their being rather heterogenous ecosystems, layers where connectivity takes control and networks become inevitable and much-necessary “tools” of visualisation but, really, do we want to declass network to a “method of analysis and not ontology”? Are we slowly going back to the dichotomy that 30ish years of STS and ANT (and non-clustered philosophers like Barad) have tried to overcome? Are we really risking this for, let’s say, Facebook where activity is decreasing and Target Audience is older and less active?

Although I see the logic of looking at the hyperlink as the constant of our current reality, I think the real constant is code. And as history has taught us, it is probable that digital evolutions will bring us somewhere different; somewhere we still cannot envision. For example, there is a come-back of TV with its important digital enhancements; more and more behavioural attitudes are being used to launch very tailored, sophisticated campaigns (contextual advertising, semantic advertising etc…). Although academia is not focused on the commercial use of these hybrids, what will happen when Instagram (now Facebook) will be scraped for common facial/background/contextual features and data borrowed by a TV channel/company? It is only a hypotheses of course. What when the alleged software used to allegedly find Bin Laden through the analysis of the background will become commodity? Surely we will still be justifying the choice of the network as an analytical tool but, what will this switch tell us? Will we become a digital version of Modern Times where we will mechanically  collect and collate URLs and visualise networks or will we still be able (or have the courage) to think critically in terms of interpretation of data and its sociological (or ethnographic) nature?

I think these questions should make us question the complexity of the reality we are living in; where we could see Google as the necessary point of passage (to use Latour) I would argue the necessary point of passage is the digital in its many forms, the code that allows traffic to be disciplined. Let’s not forget that cybernetics was inspired by the behaviour of cats and cows!

Is a network a purely ontological or a purely analytical entity? is it an entity? I think it is both things; the idea of mapping the network is not that of focusing on one page, representing the comments, likes, but it is about asking ourselves how is this particular aspect of my research altering, shaping or even contributing to the complexity of the reality I am observing and -as we all know- immersed into? I really think we should very much focus on our ideas of the map and topology and network as complex onto-epistemological concepts that are pointing us to our every-day life: technology has become a prosthetic extension (this is the genius of McLuhan/Braidotti, surely not mine!) and data will further extend our techno-existence.


Although I completely agree with the idea of the heterogenous ecosystem, ecosystem is a very networked idea too. I think the thing we are missing at the moment is the cross-platformed forma mentis. Let alone the relevance of looking at the multi-layered context. But of course, that is not generalisable.