Laura Mauldin has been publishing articles all over in advance of her upcoming book. She has a great piece in The Baffler detailing the clever ways people develop DIY solutions for inaccessible homes:
“That Amazon has stepped into the breach to fill a role all but relinquished by the health care system is indicative of a broader failure of social provisioning in the United States. While Amazon and insurance companies report billions of dollars in revenue, and innovators fantasize about the augmented reality glasses that will “fix” deafness, caregivers and disabled people are left to crowdsource improvised hacks to navigate a world indifferent—if not outright hostile—to their actual needs and desires. The failure to see disabled people as creative, collective forces worthy of our attention means that they’re left to make life work in a way that’s mostly invisible. Recognizing the creativity of disabled people, including those aging into it, can move us away from stigmatizing and toward valuing all the ingenious adaptations disabled people create.”
Perhaps Mauldin’s work speaks to me because my time at The Caregiver Space has taken me from imagining that technology could “save us” to realizing that the same forces bringing us those technologies are the forces we need saving from.
The role that giant bureaucratic institutions like Facebook, Amazon, and the Veterans Administration play in our lives is too complex for them to be the savior or the enemy. They’re both and so much more.
Whenever I’m feeling particularly hopeless, I look to other people who are making their way in this complicated world of ours. There are millions of people who have created endless clever little workarounds to the obstacles we face. Sometimes they’re ideas I can copy and use myself. Sometimes they’re a reminder that we don’t need to change the whole world to change the way our day unfolds.
Disability at Home is a new website that’s a fantastic resource. And of course we love when people share their solutions and brainstorm together in our Facebook group.
Disability Without Poverty is planning a national dance party for August 28th. While this is a Canadian event, I'm guessing they'd be happy for you to join and dance anywhere in the world.
The Plan Institute (always) has upcoming webinars to help Canadian caregivers (drumroll please) plan for your future.
Plenty of us have heard anecdotes about the horrors of working for a company that tracks every move of employees. I know several who have left jobs because of the stress of productivity tracking. The NYTimes shares stories of the rise of productivity tracking, including in nursing homes, social work, and hospice.
In a report that surprises no one, two thirds of US National Cancer Institute cancer centers were non-compliant with federal price transparency requirements. It's a pipe dream to hope that one day people in America can know what charges they're agreeing to be responsible for before they're treated.
KHN found that US cancer patients were 71% more likely to have bills in collections, face tax liens and mortgage foreclosure, or experience other financial setbacks. And those who went bankrupt were likelier to die than cancer patients who did not.