“Care is an organizational structure needed to keep our nation running.” “Care work makes all other work possible.”

Care is an organizational structure needed to keep our nation running. It’s, by definition, infrastructure.

Source: Molly Doris-Pierce on Twitter

Putting care—not just care work, but care—at the center of our economy, our politics, is to orient ourselves around our interdependence.

Source: The Year That Broke Care Work | The New Republic

care work makes all other work possible

Source: Care for All Agenda

I added those quotes to my Just Sayin’ collection in a new section on care.

I love how the Biden administration is centering care and pushing for HCBS (Home and Community Based Services) funding, especially after an administration that centered cruelty and left the HCBS system on the brink of collapse.

President Trump and Sen. McConnell’s relief bills contained no funding for HCBS, leaving the system on the brink of collapse. The most recent relief bill, the American Rescue Plan, contains $12 billion for HCBS, and advocates weren’t even certain the money would be in there until late in the process. Historically, home care and disability services in general simply haven’t been a priority, under Democrats and Republicans. Under President Joe Biden, that appears to have changed, as $400 billion is more than any of the advocates I spoke to had hoped for or expected.

Source: Biden Plan Would Allow People Needing Care to Stay at Home – The American Prospect

Deinstitutionalization and HCBS services are the biggest priorities of the neurodiversity and disability rights movements. That $400 billion is desperately needed.

Interdependence and care are good framing and good centering. Design is tested at the edges, where care is most needed. This $400 billion is a very welcome recognition of all that. Cheers to all the advocates and policy workers who got us to where this is even a possibility.

I’ve been rabbitholing, lately, on eugenics, particularly on what I call the cradle-to-grave eugenics of our current systems, contrasting that with the bioarchaeology of compassion and care. During my journey, this line jumped out to me as a disabled and neurodivergent parent of disabled and neurodivergent kids:

“[O]ur system punishes you for not practicing eugenics by not providing a social safety net.”

By not providing care.

When care is not infrastructure, when we are not oriented around our interdependence, we generate ableism and eugenics.

But if you’re killing an entire person to get rid of a non-communicable health condition, maybe think on why you’d feel the need for that. Is it for the good of the child? Is it for the greater good? How do you define that? Maybe it’s because our current system places greater value on a certain type of person? Maybe it’s because our system punishes you for not practicing eugenics by not providing a social safety net.

Source: Neoliberal Eugenics 1: Selective Abortion – Leslie’s Blog

What will future archaeologists of our care make of us? Let’s unlearn the individualism myths and politics of resentment engrained in us, center care, and celebrate our interdependence.

The notion of disability in our society is underscored by a bizarre conception of “independence”.

It is time to celebrate our interdependence!

Source: The Myth of Independence: How The Social Model of Disability Exposes Society’s Double Standards » NeuroClastic

We are dying for you to widen your lens.

Republicans have balked at the idea that infrastructure encompasses caregiving. “We’re up against a gender and racial bias that this work is not worth as much as the rubber, steel and auto work of the past century,” Mary Kay Henry, president of SEIU, told The Washington Post. “The key job right now is we have to in the public imagination and in the congressional debate widen the lens, so that people understand that investment in caregiving is an investment in infrastructure.”

Source: Biden Plan Would Allow People Needing Care to Stay at Home – The American Prospect

Previously:

Erasing the Edges: Inclusive Design, Disability Dongles, and Inspiration Exploitation

Mood: Our appeals to design for the edges have been translated into disability dongles and inspiration exploitation.

Framing accessibility as an edgy marketing slogan without centering disabled people is problematic.

In disability-centric designs, there’s a very specific way that internal grassroots efforts are sold to the powers that be. Executives are pitched on the mass appeal of accessibility, on the basis that by designing for a disabled person, everyone benefits. This highly simplistic view has become one of the core tenets of so-called inclusive design. And while there is a traceable history of this phenomenon, when pursued as a corporate strategy, it risks causing more harm than the design solves. This harm happens through a four-part process:

Source: Why won’t Nike use the word disabled to promote the Go FlyEase shoe?

Those four parts are:

  • Inspiration Exploitation tropes
  • Disability euphemisms
  • Disability erasure
  • Product inaccessibility (often financial)

Design is tested at the edges. I believe and advocate that. Thus, it is supremely deflating to have it reduced from an acknowledgement and confrontation of structural realities to a four-part gloss that erases and excludes the edges.

For FlyEase to have a future, it needs to honor its history by finding a way to appeal to disabled consumers beyond tokenistic representation or inspiration. It would require a campaign that demonstrates a commitment to learning about what disability is, rather than merely promoting accessibility to reach mass audiences. And if we’ve learned one thing as disabled design critics, it is that stories inform the way we design. Disabled people are the original FlyEase consumer. It’s about time Nike stops erasing us.

Source: Why won’t Nike use the word disabled to promote the Go FlyEase shoe?

My dyspraxic kid has used FlyEase for years. They are a good design and not a disability dongle, but the marketing not only fails to center the right people, it erases them.

There is no path to inclusive design that does not involve direct confrontation with injustice. Who do your product and your marketing center, and do they confront injustice?

De-centering Yourself in Distributed Work

Not everyone communicates the same way. When you work to make a distributed model inclusive, it is best if you can de-center yourself, your norms, and your experience, and start thinking primarily in terms of the experience of others. For example, how would a person with an auditory processing disorder experience a video meeting? A deaf person? A blind person? What avenues are there to make communication effective between all people?

Source: 18F: Digital service delivery | Building distributed teams

Auditory processing disorder makes video calls, phone calls, and the lecture model difficult for me. Before I retired, I was lucky enough to work somewhere that supports differentiated instruction, positive niche construction, and neurological pluralism. My career would have been much different and much shorter if I hadn’t spent 15 years helping build a distributed company that appreciates these things and tries to build them into the culture.

Here’s some framing to help “de-center yourself, your norms, and your experience, and start thinking primarily in terms of the experience of others”: