Celebration Through Action: The Obligation of Information and Communications in a Time of Alternative Facts

Three years and a day ago a nurse injected me with a lethal chemical cocktail designed to kill any remaining cancer cells in my body, destroying my bone marrow in the process. Three years ago a doctor pushed harvested stem cells directly into my heart where they were pumped to the rest of my body to regrow my marrow and save my life.

For my third birthday I was going to post an inspirational missive on moving forward and on the  obligation to use the gift of life to improve the lives around us. Then I realized actually working to improve lives is more important than talking about my experience. So today, to mark my third birthday I want to talk about action.

We scholars and academics in the information domains have a special obligation in these days of alternative facts. We academics working with both information and communications have an even more urgent obligation. That obligation is to work with communities around the country and around the world to actively build knowledge and a common framework for evaluating the work of politicians, scientists, activists, and the citizenry.

Some will say that this is a function of better education. If we could do a better job of building literacy in our communities – information literacy, media literacy – then the natural result would be a more unified view of the world. The problem with this argument is that the current political separation is not the result of a lack of information or access to the media, or a naivety around information. The increasing ideological divide is not because our communities have too little information, or even a general gullibility. No, the increasing divide and introduction of alternative perspectives is rather a result of sophisticated and conscious information behavior.

Remember that the filter bubble problem we now face was a solution to the problem of information overload. It is the result of information scientists and communication scholars studying the idea of matching information seeking behaviors, tuning search engines to user preferences, sentiment analysis, hyperlocal information needs, hyperlocal news, that has shifted agency and decisions to the individual. We saw the flood of information and in a deliberate attempt to buffer a “fire hose” of information we built data science and interfaces and algorithms and newspapers of the future to lower cognitive load and better meet the needs of the user/reader/citizen/patron.

We are not facing a gullible public overrun by the algorithms of the greedy and the manipulative. We are facing citizens engaged with tools built with the best of intentions that, yes, can be (and are being) manipulated, but ultimately allow people to view knowledge as simply an information problem. That is, what one believes to be true, like information, is to be managed, tailored, and individualized without the necessary social responsibility to connect, debate, and develop consensus.

The danger is not seeing truth and meaning as contextual; it is in not proactively working to shape that context. This is not about alternative facts, propaganda, nor misinformation. These concepts have always been at play. The fake news of today is the yellow journalism of a century ago – defined more by profit motive than ideology. The problem is not in construction of meaning or in agreeing on facts, but rather the necessary social component of defining what those facts mean.

Librarians and journalists alike have been about helping communities make better decisions through access to knowledge. We both hold to a code of ethics and principles that favor rationalism and both at their core require an internal motivation to seek out the truth. But – and this is vital – we both also believe that such motivation must include a social knowledge aspect. That is, both believe that communities must act together as well as individuals within a community. It is not simply speaking truth to power; it is understanding that true power comes from common effort. Librarians and journalists must be part of moving people to action. Exposing corruption in the news must be met by editorial calls for consequence. Teaching information literacy must also mean teaching information activism. It is not about highlighting inequities; it is about fixing inequities. It is not just about calling for diversity; it is about empowering diverse voices.

And so I come back to action.

Our goal must be to be knowledge schools. Pushing forward our different fields of information, librarianship, journalism, and communications, yes. But also working together around a common mission of impact. A knowledge school must seek to not only document society, but to improve it. Not to be neutral, but to be truthful and to actively work with our communities to knit a common and ever-evolving worldview. In this worldview there will be disagreement and argument, but it will serve as a common framework for debate and ultimately learning.

I am alive today because scholars in the fields of biology, chemistry, medicine, nursing, public health, pharmacology, information, and communications strived not just for knowledge, but impact. The same scholars that developed deadly chemical weapons in World War I later saw that mustard gas could be used to stop the uncontrolled replication of cancer cells and would develop life-saving chemotherapy. I am here today because information scientists built technology to transfer billions of points of data into journals and clinical trials. I am here today because journalists, and public relations experts, and communication scholars helped transform cancer from a shameful scourge to a noble curable fight in the mind of the public.

We have seen the power of scholars in information and communication coming together to save lives by fighting the misinformation campaigns of big tobacco. We have seen reporters work with librarians to uncover corporate malfeasance where carcinogens pollute the environment. We have seen those same reporters and librarians then hold those responsible accountable.

We all stand at an inflection point with the current national political climate. We have seen a resurgent press seek to hold politician and policy accountable. We have seen librarians stand up for the rights and voices of all community members. In the halls of academia, we must also seize this moment with our research and our teaching and our service. We information and communication scholars need to develop a response (systems, theories, courses, graduates) that replace walls of isolating code that encircle ideological factions, with platforms of community knowledge building. We must model that strident argument and sincere disagreement does not have to result in factions and fractures, but in a clearer understanding of the world. That has been the cornerstone of scholarship since Socrates, and it is our responsibility to promote that throughout society.

* Thanks to Professor Ernest Wiggins for his feedback

Light the Night with Mission Remission

Hi! If you are reading this right now it is because folks like you, and thousands more who support the Leukemia & Lymphoma Society at events like Light the Night. It is through their work and your generous support, that I survived Hodgkin’s Lymphoma. Funding supports research and service that lead to treatments and stem cell transplants. It has transformed what was once a death sentence into cures.

This year my family is once again going to Light the Night to raise funding and awareness of blood cancers. Please join them as they walk Thursday the 27th here in Columbia (at the State House). If you can’t make it to South Carolina there are walks all across the country, or donate to support our team, Mission Remission.

Thanks again for your support and, you know, my life.


My Last Cancer Post…I Hope

Today is my second birthday.

Two years ago yesterday nurses were shoveling ice chips into my mouth to minimize oral blisters from a Melphalan injection. The Melphalan was the last ingredient of a toxic chemo cocktail that would kill my bone marrow, and thus my ability to make blood or muster an immune response. In essence, two year ago yesterday I received a lethal dose of chemo as a salvage attempt to rid my body of cancer because the preceding 6 months of chemical warfare was insufficient.

Two years ago today a doctor slowly pushed six syringes of my own frozen stem cells into my heart. The now thawed cells would find their way back to the not decimated core of my bones and, slowly at first, begins to make the cells to feed, defend, and repair my body.

Yesterday I received six shots as my second year vaccinations, completing a two year journey of recovery and a suppressed immune system. Two years of fearing colds, only eating hot processed foods. Two years of regrowing muscle, and weaning myself from drugs that modulated my pain, my blood chemistry, even my sleep. Two years from 42 steps in a hospital ward to going home to going to work to going on airplanes to visiting the world.

Since that day of ultimate peril I have been to the Tower of London, down the Italian boot swimming in the Mediterranean Sea, to the resort coast of Belgium, to the flower markets of Amsterdam, enjoyed a November Spring in New Zealand and a February summer in Australia. I have ridden a Segway through an historic garden in Rome, examines 1,500 year old illuminated manuscripts in the archives of Bruges, toured the Vatican Library, and three days ago plunged to the floor of the Gulf of Mexico to scuba among the fish.

I did all this with the love and support of a wife who never lost faith. With a mother who shared her faith with me. With two boys who make me more proud than I ever thought was possible. I have done it with co-workers who picked up the things I dropped and a community of colleagues who now truly span the globe. By my side have been doctors and nurses and medical technicians that healed my body and fed my mind.

I pray that you never have to learn what you are capable of by facing cancer, but there is nothing inherent in recovery that makes us challenge ourselves. Travel, fellowship, love, risk is ultimately a choice. A choice to say yes and know that you will fall. But also know you will get up. And if you can’t get up at first know that you can ask for help. A choice to see the world, even if your world is only as far as the street corner.

Not everyone recovers from cancer or a stem cell transplant. Not everyone will regain his or her strength or mobility. I am lucky. Cancer no longer defines my life or the confines within it. I choose to move beyond being a survivor to simply being a person. A person faced with decisions, tragedy, and triumph. I choose to engage, to attempt, to plan, to move forward and to face the barbs and pain that comes with that choice. What do you choose?