I was ten years into a career as a user experience designer making new digital products when diabetes blew my family's life apart. The complexity and relentlessness of the burden of care that came with my youngest daughter's diagnosis at 1.5 years old, were overwhelming. I learned that people with diabetes are always 10 minutes of inattention away from a coma. Run your blood sugar too low and risk brain injury or death. Run too high and you do cumulative damage to your organs, nerves and eyes. And as a designer and hardware hacker I couldn't accept the limitations and poor User Experience I was seeing in all the tools we were given to deal with it.
Then I discovered Nightscout (a way to monitor my daughter's blood sugar in real time from anywhere in the world) and Loop (a DIY open sourced, artificial pancreas system that checks blood sugar and adjusts insulin dosing every five minutes 24/7) and the #WeAreNotWaiting community that produced them. For the first time I saw the kinds of tools I needed and true power of solutions that come from the people living with the problem. When I learned about the Tidepool's project to take Loop through FDA approval and bring it to anyone who wants to use it to give the same freedom and relief that we've experienced from it, I had to get involved. Now we are taking an open source software through regulatory approval and using real-life user data from the DIY community for our clinical trial in a process that is turning heads in the industry. We'll get into the many ways this story demonstrates ways that user driven design, open source models and a counterculturally collaborative approach with regulators are shifting the incentives and changing the landscape toward one more favorable to innovation.
I can’t wait for Chuck Chugumulung and the gang to get the video for this week up on YouTube so I can share it with colleagues.
Based on what I’ve heard, it might not be a completely terrible thing to class what the IndieWeb is working on fixing as a broad public health issue–but in its case a mental health one instead of a pancreas and diet related one.
Dan Mallory, who writes under the name A. J. Finn, went to No. 1 with his début thriller, “The Woman in the Window.” His life contains even stranger twists.
Please change my Twitter password…
These were the words I texted my husband on November 18th as I traveled home from NCTE. Exhausted yet fulfilled, I knew my brain needed a break from the constant stream of learning that Twitter provides me with. Take a break fully in order to be more present ...
If you're someone, or you know of someone who has been impacted by mental health illness, then you may find there are aspects of this letter that will be hard to read.
I remember those old days and miss the feel it used to have as well. The regrowing blogosphere around the IndieWeb and Micro.blog are the closest thing I’ve seen to that original feel since ADN or smaller networks like 10 Centuries and pnut. I enjoy finding that as I wean myself away from Twitter, I do quite like going back to some of the peace and tranquility of reading and thinking my way through longer posts (and replies as well). Sometimes I wonder if it doesn’t take more than ten minutes of thought and work, it’s probably not worth putting on the internet at all, and even then it’s probably questionable… I’m half tempted to register the domain squirrels.social and spin up a Mastodon instance–fortunately it would take less than the ten minute time limit and there are enough animal related social silos out there already.
As an aside, I love the way you’ve laid out your webmentions–quite beautiful!
You might have trouble imagining life without your social media accounts, but virtual reality pioneer Jaron Lanier insists that we’re better off without them. In Ten Arguments for Deleting Your Social Media Accounts Right Now, Lanier, who participates in no social media, offers powerful and personal reasons for all of us to leave these dangerous online platforms.
Lanier’s reasons for freeing ourselves from social media’s poisonous grip include its tendency to bring out the worst in us, to make politics terrifying, to trick us with illusions of popularity and success, to twist our relationship with the truth, to disconnect us from other people even as we are more “connected” than ever, to rob us of our free will with relentless targeted ads. How can we remain autonomous in a world where we are under continual surveillance and are constantly being prodded by algorithms run by some of the richest corporations in history that have no way of making money other than being paid to manipulate our behavior? How could the benefits of social media possibly outweigh the catastrophic losses to our personal dignity, happiness, and freedom? Lanier remains a tech optimist, so while demonstrating the evil that rules social media business models today, he also envisions a humanistic setting for social networking that can direct us toward a richer and fuller way of living and connecting with our world.
In a new book, 27 psychiatrists and mental health experts asses President Donald Trump's behavior. Do his impulses explain his decisions? The book's editor Dr. Brandy Lee and Tony Schwartz, co-author of Trump's "The Art of the Deal," join Lawrence O'Donnell.
Tuesday on the NewsHour, a federal appeals court takes up President Trump's controversial immigration order. Also: Fact-checking the claim that the press underreports terror attacks, shocking details of a Syrian prison, how Betsy DeVos could reshape education policy, unique challenges for black children with autism and a new take on Timothy McVeigh's motivation for the Oklahoma City bombing.
The worst shame in the segment on autism was that the family felt shame for taking their son out into public.
Nice to see some of our favorite folks from NPR Radio making the rounds on television.
We are naturally drawn to finding solutions. But are there ever problems we shouldn't try to solve? Lulu Miller visits a town in Belgium with a completely different approach to dealing with mental illness. Families in the town board people – strangers - with severe mental illnesses in their homes, sometimes for decades. And it works, because they are not looking to cure them.