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.
Here’s the video I mentioned yesterday. Those deeply enmeshed in the IndieWeb movement and many of its subtleties will get a ringing sense of déjà vu as they watch it and realize there’s a lot of overlap with how (and why) Matt Lumpkin is working to help those with type 1 diabetes and the IndieWeb. Perhaps there are some lessons to be learned here?
Syndicated copies to:
There was an eerie and surprisingly large overlap of a lot of what Matt Lumpkin said in his talk this morning and the IndieWeb movement. If you just change the disease from Type 1 Diabetes to Social Media, there are a tremendous number of similarities between the two approaches of problems to be solved in terms of giving people agency, ownership of their data, the silo nature of the big corporations in the space, and the lack of solid inter-operability and standards.
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.
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 ...
When I first got on Twitter it was like usenet in the 90s. Just a bunch of people talking shit about things that they enjoyed. It was small enough that everyone seemed to know each other, but large enough that there were still interesting nerdy people to find and get to know and enjoy the company of. The perfect little club.
But at some point it went horribly wrong.
I hope that as you wean yourself away from Twitter that you regain the ability to do longer posts–I quite like your writing style. This is certainly as well-put a statement about why one should leave Twitter as one could imagine.
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.
This looks like an interesting book to read for some related IndieWeb research. Perhaps something Greg McVerry could use in his proposed talk?
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 segment on autism in combination with the episode of Invisibilia on mental health I heard last night make me think we should drastically change how we treat and deal with mental health in our society.
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.
A stunning idea, and one that could do well not only for the mentally ill among our friends and families, but some interesting psychology for parenting and expectations of parents for their children.