It taught me more than I could have imagined about living with a life-shortening disease — and about myself.
We can’t let misinformation—or worse—go by without comment.
I think it’s time for more people to speak up in health care.
More pediatricians should express their measles outrage.
More people should chronicle the reality of living with chronic conditions.
Today is Rare Disease Day, when we honor the millions of people who teach us what it’s like to live at the edges of the known world of medicine. Continue reading
What if every conference displayed it on a screen, so that every public conversation in every industry was framed by the context of the coming age boom?
What if we look at this data and ask, as Ai-jen Poo urges us to do:
What joys could getting older and caring for one another bring?
How else might we prepare?
- The Next America, by Paul Taylor and the Pew Research Center
- The Age of Dignity, by Ai-jen Poo of Caring Across Generations and the National Domestic Workers Alliance
- Valuing the Invaluable: The Growing Contributions and Costs of Family Caregiving, by Lynn Feinberg, Susan C. Reinhard, Ari Houser, and Rita Choula of the AARP Public Policy Institute
Join the discussion:
- White House Council on Aging (hosting regional forums across the U.S. and on Twitter: #whcoa)
Juhan Sonin and his team at Involution Studios capture essential health messages in cards — actual, physical cards that you can stack in a deck or lay out across a table. The front is an arresting image and the back lists evidence and tips. The cards are tactile, delightful artifacts of an ongoing conversation that Invo is holding with the world.
Poetry is my personal slow-down hack. I never leave for a trip without tucking a favorite book of poems into my bag. Grace Paley, Billy Collins, and Vera Pavlova are currently seeing a lot of the country.
Because even as I relentlessly gather, share, and create evidence for why peer-to-peer health care will transform our lives, if we let it, I know that my own health and happiness must come first.
For the full Slow Down story, please read: “How a Health Axiom Card is Made.”
I’m taking advantage of the “snow day” to share what I have been reading, watching, listening to, thinking about — and I invite you to join me, even if you don’t have a snow day. (Truth be told, DC only got a couple of inches and a 2-hour delay, but humor me.)
Legitimacy through public service: The New York Times lifted their pay wall so non-subscribers could follow their storm coverage. I love when legacy media companies are aware of the responsibility — and opportunity — embedded in moments of public need. How might we infect medical and scientific journals with the same sense of responsibility and opportunity? Continue reading
Longtime readers will recognize this story, but I’m posting it again here–and on Medium–to honor Moebius Syndrome Awareness Day:
When Burt Minow was born in 1922, his disability — partial hearing loss and complete facial paralysis—was immediately apparent. His mouth was frozen in a sort of frown, and he could not suck on a nipple to get milk. Doctors advised his parents to put him in an institution and forget about him. Continue reading
Nancy Stein (@SeniorityMatter) shared an opinion piece by Rob Lowe about long-term care planning. He’s promoting his partnership with a financial services company, but it’s a good article. I wonder what effect a celebrity can have on this topic. For some, the financial frame might be a good hook. For others, an appeal to intergenerational responsibility might focus the mind: “Take care of Mom the way she took care of you.” We sure need something to break through the denial wall. Continue reading