Posted in Advocacy, Health Communication

World Rare Disease Day 2017


February 28 is World Rare Disease Day, a day dedicated to raising awareness of rare diseases and improving access to care for patients and their families. For American patients and their families, this observance is especially needed, and especially meaningful, this year, as some members of the current US administration aim to dismantle the Affordable Care Act (ACA). The protections of the ACA, like coverage for preexisting conditions and the elimination of caps on coverage, are critical to patients with rare diseases. Let’s remember the needs of people with rare diseases during health care policy conversations. Better yet, let’s have people with rare diseases IN those conversations!



Posted in Communicating for Social Change, Role Models, Inspiration

In Memory of Hans Rosling

I was sad to hear that Hans Rosling died today. I appreciated his unique approach to analyzing and using research data (especially qualitative data). He produced animations that made complex statistics lively and meaningful. As the BBC noted:

Facts, Mr Rosling believed, could correct “global ignorance” about the reality of the world, which “has never been less bad”.

As his son, Ola Rosling, said on Twitter,  Hans Rosling had a “dream of a fact-based worldview.” We have never needed it more. The “fact tank” he helped found, Gapminder, will carry on his dream and his work.



Posted in Communicating for Social Change, Inspiration, Role Models

David Harbour at SAG Awards

The subject of this blog is “difference-making” communication. David K. Harbour gave a stunning example in his acceptance speech at last night’s Screen Actors Guild Awards ceremony:

In light of all that is going on in the world today, it is difficult to celebrate the already-celebrated Stranger Things. But this award from you, who take your craft seriously and earnestly believe — like me — that great acting can change the world, is a call to arms from our fellow craftsmen and – women to go deeper and through our art, to battle against fear, self-centeredness, and the exclusivity of a predominantly narcissistic culture and through our craft to cultivate a more empathetic and understanding society by revealing intimate truths that serve as a forceful reminder to folks that when they feel broken and afraid and tired, they are not alone.

We are united in that we are all human beings and we are all together on this horrible, painful, joyous, exciting, and mysterious ride that is being alive. Now, as we act in the continuing narrative of Stranger Things, we 1983 Midwesterners will repel bullies. We will shelter freaks and outcasts, those who have no home. We will get past the lies. We will hunt monsters. And when we are at a loss amidst the hypocrisy and casual violence of certain individuals and institutions, we will, as per Chief Jim Hopper, punch some people in the face when they seek to destroy what we have envisioned for ourselves and the marginalized. And we will do it all with soul, with heart, and with joy. We thank you for this responsibility!



Posted in Inspiration, Role Models

Holocaust Remembrance

Yesterday was International Holocaust Remembrance Day. I spent it reading Behind the fireplace: Memoirs of a girl working in the Dutch Resistance, by Andrew Scott and Grietje Okma Scott.

Grietje, who died a year ago, on January 4, 2016, at the age of 93, was just a young woman when she joined the Dutch Resistance against the Nazi occupation of her country. Through her story, we see the difference that one person can make in the lives of others, the course of a war, and the fate of a nation, as well as the web of social connections that supported her brave actions. Her story also serves to remind us of a theme that runs through human history:  where there is oppression, there will also be resistance.


Posted in Communicating for Social Change, Media Communication, Political communication

TED-Ed: What Orwellian Means

In my last post, I captioned an image with the word “Orwellian,” intending a reference to the works of George Orwell, such as 1984 and Politics and the English Language.  Now, The New York Times reports that 1984, published in 1949, is surging to the top of the Amazon best-seller list.

What does “Orwellian” mean? This short video by Noah Tavlin for TED-Ed lays it out clearly and beautifully. While authoritarian governments are known to employ Orwellian tactics, Orwellian means more than just authoritarianism. The term refers to how people in power manipulate language to control the thoughts, opinions, and actions of others, and thus, their very reality. Deception is a key linguistic strategy for manipulation, and a constant barrage of deception diminishes the individual’s sense of reality. This makes the individual dependent on those in power for “truth,” which serves the goal of promoting unquestioning adherence to the ideology of the powerful.

After watching Tavlin’s video, I was reminded of how deeply communication is entwined with projects of social change. I was also reminded that, while “communication for social change” sounds like a positive endeavor, the term itself has no inherent morality: communication can be used to foster both constructive and destructive social change. Communication is simply a tool, one that immoral actors can wield as easily and well as moral actors.

I am heartened to see the renewed interest in 1984. In a period where political leaders routinely and unabashedly lie in the face of concrete and easily retrievable contrary evidence, where a President can tell citizens not to believe photos of inauguration crowds that they can see with their own eyes, where newspaper editors debate whether it is proper to call a lie a lie, where an advisor to the President tries to silence the media by making it “the opposition party,” where another advisor to the President suggests that there are such things as “alternative facts,” we have never needed Orwell’s insights more.