In 2014 my caregiving interests were evolving to be more about awareness and less about about tools for effective caregiving. When you talk about caregiving or disabilities you start to notice that people's eyes glaze over. They don't believe those topics are ever going to be their problem or they believe the problem is so far away, they'll be better prepared for it when the time comes. Death is another one of those topics that no one wants to talk about. People also assume they're going to be ready when it is their time.
If you've ever heard of an untimely death, you'll know that most people aren't "ready" when they die. Just like how they're not "ready" to become disabled. Even if they're 80+ years old.
I wanted to continue the caregiver/disability conversation at SXSW in 2014 and I decided to bring in death. John Romano and Evan Carroll, the co-authors of Your Digital Afterlife were a natural choice for partners in continuing the conversation, so in 2014 Evan co-hosted a core conversation with me.
We were lucky to have some very talented attendees in the discussion. Cameron Friedlander wrote a fantastic summary of the event and Chris Cullman made a graphic recording.
I'd love to hear your thoughts on my summary of the conversation or for you to check out some of the articles written before the discussion.
A summary of my interests in Designing for the Fringe.
A smart example of using technology in a way that makes sense, not just technology for technology sake.
A summary of Fringe Design: Tackling Disability and Death at SXSW (with Evan Carroll).
Articles related to Designing for the Fringe.
Going beyond "let me know how I can help."
I am uncomfortable with the word disabled.
An overview of the core conversation conducted with Evan Carroll at SXSW.
An introduction to Jordan and Jen Reeves.
Seven things you should know if you're building an online community.
A look at my 23andMe results.
We prefer to consider those at the fringes of life. Yes, we’re talking about incapacitation and death. It’s not fun. It’s not sexy. And it certainly won’t inspire the next wave of thoughtful design. Or will it?
As healthcare costs rise and we grow older, we find ourselves at an impossible impasse; jobs that provide dedicated healthcare to people who really need it are not desirable.
People misunderstand how Alzheimer’s affects the lives of caregivers and those with memory problems.
When you see someone wearing a cause wristband, ask them about it.
The US healthcare system has been evaluated, poked and prodded for years to determine why it is broken and what it is going to take to fix it
Professional and family caregivers helped me understand coping strategies for daily interactions with a family member with Alzheimer's.
The things I so desperately want are just weighing me down.