Pain
The pain that is so hard to live with is the very thing drives me closer to the truth of the human condition.
Being here: A Buddhist approach to pain – Wildmind
Disabled and neurodivergent people are always edge cases, and edge cases are stress cases.
The logistics of disability and difference in a structurally ableist and inaccessible world poisoned by Tall Poppy Syndrome, the politics of resentment, fundamental attribution error, and sameness-based notions of fairness are exhausting, often impossible. We are perpetual hackers, mappers, and testers of our systems by necessity of survival.
We exist as friction. It’s exhausting.
Crawling, slithering
Along the edge
Of a straight razor
And surviving
Colonel Kurtz’s recording from ‘Apocalypse Now’ 1979
Can I scream?
When the day is over the doors are locked on us
'Cause money buys the access and we can't pay the cost
How can we expect anyone to listen
If we are using the same old voice?
We need new noise
New art for the real people!
We dance to all the wrong songs
We enjoy all the wrong moves
We dance to all the wrong songs
We're not leading
We dance to all the wrong songs
We enjoy all the wrong moves
We dance to all the wrong songs
We're not, we're not, we're not, we're not, we're not
We're not...
Leading
We're not leading!
New Noise by Refused
Power
Stimpunks was forged in the quest for survival and inclusion. We are a 501(c)(3) nonprofit built by and for neurodivergent and disabled people. Stimpunks was founded in December of 2021. We are a community affair. We’re Autistic, ADHD, OCD, PTSD, Tourettes, schizophrenic, bipolar, apraxic, dyslexic, dyspraxic, dyscalculic, non-speaking, and more. We’ve collectively experienced rare diseases, organ transplants, various cancers, many surgeries and therapies, and lots of ableism and SpEd. We’ve experienced #MedicalAbleism, #MedicalMisogyny, #MedicalRacism, #MedicalTrauma, and #MedicalGaslighting. We understand chronic pain, chronic illness, and the #NEISvoid “No End In Sight Void”. We know what it’s like to be disabled and different in our systems. We know what it is like to live with barriers and what it means to not fit in and have to forge our own community. Disabled and neurodivergent people are always edge cases, and edge cases are stress cases. We can help you design for the edges, because we live at the edges. We are the canaries. We are “the fish that must fight the current to swim upstream.“
A necessary part of design is compassion, and necessary parts of compassion are acknowledging the structural realities of marginalized people and rejecting narratives of resentment. “Compassion is not coddling.” Compassion is practical and effective restorative magic. Compassion humanizes flow and improves outcomes.
Our designs, our societies, and the boundaries of our compassion are tested at the edges, where the truths told are of bias, inequality, injustice, and thoughtlessness.
The insights of intersectionality, the social model of disability, and design for real life help us design and build for these truths and do the “truly essential work”:
- “No one knows best the motion of the ocean than the fish that must fight the current to swim upstream.”
- “By focusing on the parts of the system that are most complex and where the people living it are the most vulnerable we understand the system best.”
- “When we build things – we must think of the things our life doesn’t necessitate. Because someone’s life does.”
- “That’s why we’ve chosen to look at these not as edge cases, but as stress cases: the moments that put our design and content choices to the test of real life.”
- “Instead of treating stress situations as fringe concerns, it’s time we move them to the center of our conversations-to start with our most vulnerable, distracted, and stressed-out users, and then work our way outward. The reasoning is simple: when we make things for people at their worst, they’ll work that much better when people are at their best.”
We come to this space through suffering and pain, through struggle.
Choosing the Margin as a Space of Radical Openness, bell hooks
The new beat! The new beat!
The new beat! The new beat!
The new beat! The new beat!
The new beat! The new beat!
The new beat! The new beat!
The new beat! The new beat!
The new beat! The new beat!
The new beat! The new beat!
Community is magic.
Disability Visibility: First-Person Stories from the Twenty-First Century
Community is power.
Community is resistance.
