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?

 

Data, visibility and agendas

I have been working on an independent project for the last couple of months. I surely enjoyed it. However the task, I will outline some of my reflections.

The project was about the level of poisonous and life threatening levels of mercury (amongst many other acronyms) in the soil of a once lovely area of centre Italy: Ciociaria.

Those who know something about cinema are familiar with the area and its history. However, it is another story. We have collected data from the local ASL (like the local NHS), compiled and analysed it, gathered everything that s available online with regards to experiences of cancer, animals with blue tongue and so on and so forth especially for two cities: Colleferro and Ceccano, where the level of thyroid cancer, pulmonary diseases, and all sorts of  medically challenging cases of leukaemia have made Ciociaria one of the most poisonous areas in the country Surely, these two cities are not alone because the wild industrialisation the are has been experiencing has migrated very often. Metal first, pharmaceutical when there was the pharmaceutical boom and now services, with the boom of big shopping centres, massive IKEAs that will be sitting above historical sites. Of course, waste management is not something we can forget. In fact, in some data we gathered, we noticed that in 2013 600 tons of so-called “organic vegetables” have been shipped from an area south of Ciociaria. Funky stuff that was not mentioned to these artsy fartsy bobo…the tomatoes were grown on waste sites.

Anyway, nothing really new. Everybody has taken to Social media, traditional media, published books and compiled statistical evidence about the need to sanitise the area, the river (did I mention it? oh no. That s the part we re still analysing along with the calcium deficits caused by thyroid problems), the river banks and the soil.

All this long story to say: where is that statistics becomes a place of resistance in this particular case? There has been quite a lot going on about Camilla Batmanghelidjh’s connection between lack of data and lack of policies (to protect children in her case). However, how is data and statistical evidence, the rather big movement that has taken to streets, social media and the like to be considered? Shall we start to think that big data, algorithms, onto-epistemological reasoning of the being and blabla is becoming yet another academic (hence funded) mental masturbation with no ‘connection’ to what is happening?

Surely, this could be applied to any other event, case or situation but I have been working on this one….surely the concept of political agenda comes to mind. So, if there is a political agenda -and surely the Camorra as usual- how can we really talk about data in relation to and function of a grand political design? The issue I see, and have been seeing in the last conferences I attended and participated to is that there is a considerable possibility to do with data what we did with the Internet. Making it become a ventriloquist that gives a voice to the voiceless. Without considering the “usual”  social fabric and political consequences we -as researchers- are so strongly trying to forget.

Mapping Complexities: women, issues and veiled identities

When thinking “women’s issues” in Middle Eastern countries we associate women, veil, men and burned noses. I think we all remember the “Girl without a nose”

I have recently reviewed a book from Riley and although I found it profoundly biased – there is nothing wrong with being biased but I imagine some of the women I know from ME would agree with me- I must admit that her attempt to work towards a popular-culture representation of women in Middle Eastern (used as a synonym of Muslim or Islamic…I already feel the confusion) countries is striking. Why? very simply because everything is true. the first time I approached my thesis, I had in mind the first chapter of the UN DoHR (we are all equal basically) and the poor Afghan girl whose beautiful face was disfigured by her crazy husband -affiliated or not with the Taliban, he deserves to be locked up in some mental hospital-. Riley’s book made me think a lot. A lot. Although academically problematic because it doesn’t shed a light on the complexity of “woman” in a MESEA context, it is fundamental and it should be read.

And it made me think in terms of association, dis-association, belonging and complexity. The term women is complex and is not just the plural of woman; it entails a complex set of features, characteristics, elements and navigational tools that one embeds since the early age, when we are still embryos whose life is being conjectured and imagined by mom and dad (if and when lucky).
There is a complex set of relations that need to be disentangled in order to be understood.

Some time ago I saw a kid struggling with a toy. A spiderman with a parachute; the parachute was all entangled and the poor mom was desperately trying to disentangle it, trying to find trajectories, putting it closer to her yes and then pull it a bit far, zoom in and out, continuously.

Apply that idea to the concept of the woman; then do the same to the concept of issue, then do the same with the concept “women’s issues” then do the same with women-Muslim-Islam-MiddleEast-South East Asia and so on and so forth…can we really talk about representation of the woman? can we talk about patriarchy without having problems and being paranoid that we are perhaps coming to conclusions before having at least considered the vast array of complexities?

In all this, how can we find our way around? I looked at that mom for almost 45 minutes in the end calling to her husband’s “fresh eyes” and then, eventually, succeeding in her task, accomplishing THE task, and proudly giving the spiderman with his parachute back to her kid. I also figured that it wouldn’t take too long for the kid to try new tricks with spiderman and for the parachute to get entangled once more. Again.

This is the work we have to do today as -and I use a strong term here- as scientists of the social. We must have a scientific approach and be ready that -whatever we produce- will be dismantled and we have to be ready to put our hands up and surrender, open the doors to more complex ideas and not be prisoners of old frameworks. I agree with Butler that certain gender divisions are passively imposed on us. Barad talks about the “girlification” (always referring to Butler of course) that happens when the scan of the foetus reveals the sex of the foetus. it is impossible to resist the temptation of thinking that our girl will be a beautiful engineer who will go to the female equivalent of Eaton, that will be pushed by her wonderful parents to speak mandarin, english ancient greek and perhaps -why not?- even Swedish by the age of three and will sit down with the mom to learn good manners so that by the age of 2 she will be able to eat properly, without dirtying herself, her expensive pink clothes and her beautiful hair.

Conversely, I can imagine any mom whose scan reveals the boy thinking on the discipline, the schools, the clothes. And, in both cases, imagine the grandparents buying Barbies and pink dresess, beautiful handmade clothes (pink or mini-gentlemen versions) and so there is a chain that is established that is cute and scary. Complex and multiple. The foetus becomes a person and this person has already a scarily planned future. it will not become but it is already; it is a she and it is a he; we would be lucky if the overall sphere of expectations and “what’s good for you” didn’t come along. And I am conscious that sometimes we do not have that passive pressure, but this painful aspect cannot be discussed here.

I have heard many couples giving advice on how to raise kids (whether they have kids or not), explaining why kids need to socialise and why they should be “forced” to learn some alphabet even at the age of 2.. I am not an expert parent so I cannot express my point of view (apart from a very Pink Floyd leave-the-kids-alone) but this aspect cannot be neglected. We are before being born and the characteristics of the technological device (the scan) that shows what we are -female or male parts of the human species- also influences (without having an “effect” because effect is a hard one) who we are and projects what we will become.

Scary. So, if we take this perspective and apply to our idea of the woman and then do the same to the concept of the issue and then to the concept of “women’s issues” and then to the concept of Islam and Muslim and so on and so forth, what comes out -take it from me and my experience- is a complex and multiple non-mapping something that is disentangled but re-entangles 10 minutes after having been entangled. So, what is our jobs as “social scientists” or scientists of the social (if we can still talk about a social but this is another story)? it is one of understanding that we will never understand. Some good dude some time ago argued that wise is who knows to know nothing and although arrogant, I guess this is the only way forward.

In the previous post I argued that some (and I repeat some) people are thinking to Facebook as an ecosystem and I agree and I am fascinated by this assumption. So, if an analysis of the above complexity had to extend -as in space-time- to the digital world we are embedded in, we would see complexity and the need to expand this notion of the map, topography and topology to include the way we navigate our lives from when we are not even a fully formed entity and the set of affections -no, not Touring- that cannot (cannot) be forgotten when talking about empowerment and identity. So, how to expand and intersect the world of digital with that of a complex word: woman in specific situations? My question is, if we privilege one – i.e. the scan and the foetus- over the other -the facebook pages that talk about FGM- are we not burning a big chunk of identities? In light of this, are there tools (theoretical or visual no matter) that could help redesigning the concept of the map? A new cartography of complexity?