Back to Normal, Back to Inaccessible

Kirsten Imani Kasai, 50, a novelist in San Diego and self-described introvert, describes how she found comfort and safety in the relative quietude of the past year — and fears the return of a noisier, more-demanding world. Emily Ladau, 29, a disability rights activist in Long Island, N.Y., says she worries that the shift back to in-person interactions will force her, once again, to navigate environments that weren’t designed for the physically disabled.

Source: Opinion | Reopening Anxiety? You’re Not Alone. – The New York Times

I’m an autistic, hyper-sensory wheelchair user. Loud noises and light touch can induce agonizing cramps strong enough to tear muscle, dislocate joints, and break bones. I prefer to stay at home where I am not overwhelmed by the logistics and stimulus of an inaccessible world.

During COVID lockdown, my favorite restaurants started curb side service. My doctors offered telemedicine. The various educators and healthcare workers who help us home school our neurodivergent kids offered Zoom sessions and noticed how well they responded to learning from the safety and accessibility of home.

More places became compatible with written communicators and the phone averse. I even made some progress with getting healthcare, education, and local businesses to respect communication preferences and improve digital accessibility.

And now, much of that is falling away.

We’ve been warning that the accommodations that suddenly became possible during a pandemic would go away and we’d be back to forced intimacy and the accommodations grind.

Source: Structural Ableism Doesn’t Stop at the Firewall – Ryan Boren

So thoroughly discouraging.

In the video, you will hear from some of these quieter voices. They explain that as much as they want the pandemic to end, it has also provided them with some relief from challenges, inequities and injuries that were all too common in their prepandemic lives.

Source: Opinion | Reopening Anxiety? You’re Not Alone. – The New York Times

I too felt that relief. As Kirsten Imani Kasai puts it in the video:

I felt safer. I felt safer.

Autistic people have significant barriers to accessing safety.” Likewise physically disabled people. Lockdown bettered accessibility and neurological pluralism, and thus safety, in myriad ways that are now disappearing.

Lost In Translation: Ways in Which Neurodivergent and Neurotypical Social Languages Differ

We the neurodivergent are genetically different. We experience the world through a hypersensitive nervous system which informs every aspect of our thinking, our behavior, and our social values.

The dominant social group labels our way of being in the world as disordered because they don’t understand us. Even though they don’t understand, the dominant culture controls the narrative about our differences.

Society believes the experts who are not part of our culture, who see brokenness where there is order. We gradually start to believe the myths ourselves and lose all sense of self-esteem. We come to hate ourselves for being different.

They have largely not tried to understand the biological mechanisms that create our experience of self. Instead they have tried every means possible to force us to act neurotypical.

Some of us can pretend to be neurotypical, for a while, at great cost to our health and happiness, but we cannot change our neurotype. We are neurodivergent.

Our behavior and social values are different because the way we think is different. The way we think is different because our moment-to-moment experience of the world is different.

In this article, I’ll explain the key ways in which neurotypical and neurodivergent people misunderstand each other.

Source: Lost in Translation: The Social Language Theory of Neurodivergence | by Trauma Geek | Medium

This is a great piece of research-storytelling from the intersections of neurobiology and sociology. I highly relate to all of it. Here are the 8 key ways that are covered:

  1. Emotions
  2. Empathy
  3. Nonverbal Communication and Body Cues
  4. Words Mean Things
  5. Social Rules
  6. A Different Value System
  7. Skills and Abilities
  8. Reactions to Stress, Pain, and Overwhelm

Read the whole thing, and follow the thoughtfully curated links.

Check out Trauma Geek for more great articles, including one on “Discovering a Trauma-Informed Positive Autistic Identity”.

Previously,

The Intensive Pattern Dance of Meatspace Relationships: Patterns, Sensory Overwhelm, and Solo Polyamory

I feel your patterns with every sense. The ones you’re completely unaware of. All of them. You are drowning me with your patterns and crowding out my own.

Pattern clash.

Pattern suppression.

Pattern overwhelm.

Meatspace relationships of any sort are intensive pattern dances done at the terrifying tempo of synchronous, full-sensory real-time. I need daily doses of solitude and regular hibernation intervals to sustainably withstand any other human being. Only in solitude do I have the space to unfurl my patterns, un-beset by the outside, and recline into their regulated peace.

Like many other people who aren’t neurotypical, I become exhausted and irritable from too much outside stimuli, like having people around me or trying to make conversation with music on. I’m also not great at picking up on social cues or understanding when someone’s being sarcastic - I use facial expressions to sometimes determine jokes and pretend that I understand them. However, being on the spectrum makes me dive into what I love, and for this reason, even though I’m terrible at school, I’m pretty good at writing and communications. This allows me to work around my social anxiety, leading some people to believe I’m an extrovert.

Because I had trouble making friends when I was growing up, I threw myself into learning how relationships work by analyzing and writing about them - and by now I’ve dated my fair share of people and have a number of friends. However, lately I’ve begun to realize that even though I can hide things like exhaustion and irritability by staying out for shorter periods of time, the closer I get to people the more I have to be upfront about what I need. For example, I love my partner and enjoy being around him as much as possible - but as a person with sensory sensitivities, my body says otherwise. If I don’t have enough time to myself without outside stimuli, I start to become burnt out and snap at him. If you’re like me, you’ve tried to avoid getting close to others because you felt it was necessary for you to keep them in your life - but actually, the only way to have fulfilling relationships is to let others in.

It wasn’t until looking into solo polyamory I realized I don’t have to feel guilty for having separate needs from my partner. Solo polyamory is the idea that people are autonomous beings who have different needs and wants, and alongside good communication and mutual respect between all partners, no one puts rules on each other because no one owns one another. There’s this expectation in mainstream society that if you’re a couple you should want to be together most of the time - but with solo polyamory, partners respect how much time you can set aside to see them based on work, hobbies and other people who are important to you. There’s no pressure to converge lives the longer you’re dating because with solo polyamory commitment and time together aren’t seen as mutually exclusive. In a solo polyamory group I recently joined on Facebook, I found a thread where a number of people on the spectrum talked about how finding solo polyamory has helped them work through their sensory sensitivities without feeling like there’s something wrong with them. If they need to leave a date because they’ve had too much stimuli for the day, their partners understand because they’ve had those essential conversations on what each other needs as an individual.

Source: How Polyamory Helped Me Advocate For My Needs As A Disabled Person | Thought Catalog

Pattern discovery.

Pattern sharing.

Pattern meld.

When not taken exclusively or in excess, another’s patterns are satisfying and necessary.

Previously,