Posted in Communicating for Social Change, Compassion, Conflict, Political communication

50 Years Ago: MLK Riverside Speech

Fifty years ago today, April 4, 1967, Dr. Martin Luther King delivered a powerful speech in which he connected the U.S. civil rights movement to opposition to the Vietnam War.

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His words about nonviolent action, compassion, and social change remain meaningful today – especially today.

Here is the true meaning and value of compassion and nonviolence, when it helps us to see the enemy’s point of view, to hear his questions, to know his assessment of ourselves. For from his view we may indeed see the basic weaknesses of our own condition, and if we are mature, we may learn and grow and profit from the wisdom of the brothers who are called the opposition.

Audio: https://www.youtube.com/watch?v=3Qf6x9_MLD0

Transcript: http://kingencyclopedia.stanford.edu/encyclopedia/documentsentry/doc_beyond_vietnam/

 

Posted in Advocacy, Communicating for Social Change

NORD Statement on President’s Address

Today, the National Organization for Rare Disorders issued a statement in response to the President’s address to Congress on February 28:

Washington, D.C., March 1, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to President Trump’s first speech to Congress:

“Yesterday evening, President Trump recognized Rare Disease Day and the 30 million Americans living with a rare disease in his first address to Congress. We are grateful for his recognition of the day that raises awareness for all individuals with rare diseases and their families. We are elated that he is joining us in our efforts.

President Trump also recognized Megan Crowley, and her father John, as shining examples of the untiring, steadfast commitment individuals with rare diseases and their families bring to finding treatments and cures for their disease. The Crowleys are one of many superstar families that deserve recognition, and we are thrilled that their tireless work was recognized on such a large stage.

The President continued, stating, ‘…our slow and burdensome approval process at the Food and Drug Administration keeps too many advances, like the one that saved Megan’s life, from reaching those in need. If we slash the restraints, not just at the FDA but across our Government, then we will be blessed with far more miracles like Megan.’

We agree that FDA review processes can be improved upon to expedite the development and review of orphan drugs. Yet we disagree with the President that restraints must be slashed, or that the approval process at the FDA is preventing advances from reaching those in need.

Between 2008 and 2013, 87 percent of the 113 rare disease treatments reviewed by the FDA received an expedited review, compared to 35 percent of treatments for common diseases.[i] Seventy-eight percent of rare disease treatments were approved using one or more flexible development approaches (generally defined as an approach that does not include two adequate and well-controlled trials or uses novel endpoints).[ii]

For patients with immediately life-threatening illnesses who cannot participate in clinical trials, the FDA approves 99.5 percent of all expanded access requests submitted by physicians and companies.

We also believe that the current safety and effectiveness standards for drugs and biologics are crucial to ensuring individuals with rare diseases receive therapies that will positively impact their lives. Our patients deserve the same quality therapies as everyone else, and to weaken the standards will only threaten our population with unsafe, ineffective therapies.

The FDA already shows an incredible amount of flexibility in reviewing and regulating orphan drugs. But we can still improve the process.

First, we can adequately fund the FDA to allow them to hire and retain the experts needed to quickly and thoroughly review orphan drugs. Without experts on staff, the review of orphan therapies, and consequently the delivery of orphan therapies to the patient population, may be slowed. The Center for Drug Evaluation and Research (CDER) has hundreds of unfilled positions, and we support a paradigm in which the FDA can freely hire and retain the expert reviewers our patients deserve.

Second, we can reauthorize the critical user fee agreements that fund a substantial portion of FDA’s budget. These user fees must be reauthorized this year.

Finally, we can enact the critical reforms included in the Prescription Drug User Fee Act (PDUFA) and Medical Device User Fee Act (MDUFA) commitments. For orphan drug review, we can greater integrate the patient perspective into drug development review through the further use of patient preference information and patient-reported outcomes. We can also ensure the unique rare disease experience is reflected in orphan drug review through the integration of the FDA Rare Disease Program into orphan drug reviews. Both of these key reforms are under consideration in Congress to be included in the drug user fee act reauthorization.

We at NORD again wish to emphasize our appreciation of the attention President Trump has brought to the rare disease community. Moving forward it is our hope to partner with President Trump and his administration in supporting the needs of our community, such as with the passage of these key user fee agreements.”

[i] https://www.fda.gov/downloads/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CDER/UCM542141.pdf

[ii] ibid

Huron, J. (2017, March 1). NORD issues statement on President Trump’s Address to Congress. National Organization for Rare Disorders. Retrieved from https://rarediseases.org/nord-issues-statement-president-trump-address-congress/

Posted in Communicating for Social Change, Inspiration, Role Models

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.

 

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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 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.

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Posted in Communicating for Social Change, Inspiration, Political communication

Inauguration Day: On a Moving Train

Howard Zinn, the late historian and activist, once said, “You can’t be neutral on a moving train.” The train is moving. Here are some principles on which I cannot and will not be neutral:

  • All people deserve to be treated with dignity, respect, and compassion. This includes especially those people who seem to be easy for others to marginalize, demonize, and victimize: women, people of color, the disabled, immigrants, members of the LGBTQ community, the elderly, the poor, the sick, prisoners, and people who choose religions other than Christianity as well as those who choose not to affiliate with any religion at all.
  • We must uphold and defend our Constitution, including our First Amendment protections for freedom of speech, freedom of the press, freedom of assembly, freedom of religion, and freedom to petition our government for redress of grievances.
  • We need to maintain the separation between church and state.
  • A vibrant democracy requires a free and independent press.
  • Education is a public good that creates an informed citizenry. We must support access to free, high quality public education for all.
  • Our public officials should be accountable, ethical, transparent, and truthful.
  • Service to citizens is the essence of government. Our government officials should not enrich themselves, their families, friends, or donors, at the expense of the citizens they serve.
  • Health care is a human right.
  • We need to protect the environment and the world’s natural resources from greed and undue reliance on fossil fuels.
  • We have a right to live our lives in privacy, free of government and corporate surveillance.
  • Severe economic inequality destroys the fabric of society. We must recognize that laws that unjustly enrich the few at the expense of the many, rather than any individual’s lack of effort or merit, are often at the heart of economic inequality. When we see laws that foster inequality, we must fight to change them.
  • People should come before profits.
  • Corporations are not people.

These principles are not radical. They have been expressed, to greater or lesser extent, in the Universal Declaration of Human Rights and also The Constitution of the United States. On these principles, I am not neutral and will not be silent.