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?


Big Data Big Data

Big Data is the new academic debate. It seems to receive loads of attention at least from my understanding.
 Virtualisation, control demand, power, knowledge, restrictions, anti-hacking developments and such are being discussed and represent a major concern especially with regards to freedom of speech, freedom of access to information, content control and contention and other issues that are quite important, especially if compared to the general principles of Human Rights.

The funniest part of the matter is that talks on virtualisation big data storage and big data analysis started in the media and marketing industry in 2007; at least in the UK the crisis and the big mess banks created raised the question of “what now?”.

Virtualisation white papers, ICUs and other very interactive and cute tricks to show off how “thought leader” such and such clients were, populated B2B sites. How to convince that our super mega server can store more data and take less space than the competitors? Shall we organise a roundtable with the support (obviously paid) of such and such technology-analysis publication? Shall we just organise webinars and ask such and such big media rep to gain as many leads as possible? How about conversion?

Another element of concern was education as a source of profit. How to convince local government to spend on such and such server? How to teach them that virtualisation is the next step ahead? How to make them understand the benefits of integrated campaign and data?

What happens in the marketing sector? It happens that media and marketing agencies want to make sure the client retains the agency by proving how good they are with data. Apart from my overall skepticism with data and statistics (and competence), data became THE next thing, the only way to prevent an agency to disappear as fast as it appeared (if not faster).

So, hey client, with your fees of 10% paid to my agency you can not only get a media and communication plan and strategy; we can also promise you that we can monitor what’s happening “out there” and calculate your ROI.

Now, I think I have never heard anything as blunt and FoBS as this but the meetings had become very much like “we promise you to map and trace your spending and report your ROI”…Here comes the big flow of software (in house, outsourced, real or invented) that would put any conscientious manager in a rather awkward situation. How many likes on FB show that you will buy my product? How likely are you to buy my products? IN the early days of FB boom, keeping track of its users’ analytics was not as impossible. People share a huge amount of information online. Stupidly enough, people are unwittingly giving out information about their favourite colours, their passions, their interests. And not because FB asks but because we add pictures. Anyway, this is another story I m not going to discuss.

What happens when data really becomes a big thing? it immediately becomes a big issue. A client I have heard of had this paranoia of checking advertising spend and sales in each of the 94 countries it was present in. Now, the agency of course rushed into creating an in house stupid software taht would show the spending per brand, per category, per month, per year and show the YoY changes as well as sales volumes…. all of this is ridiculous to say the least. But this is another story. What is striking is the real problem with data: imagine the massive shift of data. From something that was meant to forecast future activities to something that tells you to adjust your strategy through short-term tactics.

Advertising is always a cost. What happens with this huge amount of data we have at our disposal? Very simple: mess. We can promise the client ROI but in reality, advertising is not an investment; until it doesn t produce its results (which means, until my product is not sold), advertising is a cost. Let s bear this in mind. We have to learn how to manage this data. What I see nowadays is a massive waste on how to create the best strategy. The best strategy is the one that uses Social Media wisely and turns all of the likes into redirections to your own website/microsite/anything you want and that makes your client SELL its products. All has to feed back to the marketing funnel. The marketing funnel means that we have to reach a high conversion rate. How do you reach a high conversion rate? By using the data, cleaning it, understanding it and making sure that you are on top of it. The risks of having loads of people talking data and not understanding it is great; and so is the risk of having another big bubble: the Social Media Bubble.