neurodiversity

why we do what we do: my mother’s crone ceremony

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ebcmp quilted banner

It’s been very emotional for me to reemerge from the darkness of lockdown to return to building community through music-making. In my conversations with folks, it becomes clear that a younger generation of families don’t know about some of the ways we connected before, and don’t necessarily remember many of the ways things were different then.

In going through my instrument collection to decide what to bring to my family music classes, I brought out the box that contained the EBCMP banner. For those who don’t know, EBCMP was the East Bay Community Music Project, the organization I founded in 2012 to cultivate community music-making opportunities for people of all ages, ethnicities, faiths, economic access, neurotypes, and abilities, and any other way one might sort people into categories. I now continue that work as imeetswe, for reasons I won’t cover here. But I believe at this point in history, part of my job as a facilitator and advocate is to remind people of what once was, and what is possible again, and this banner is a powerful reminder for me.

We used to meet on second and fourth Sundays, and at this particular time we were meeting in the multi-purpose room at Malcom X Elementary in Berkeley. My mother would often drive over from the Peninsula where she lives, and join us. She was usually the oldest person in attendance, just because not so many older folks would join us often, but she did. Our second gathering in August of 2014 coincided with my mother’s 70th birthday, so we planned a ceremony to honor her entry into the crone realm (which, whatever your association with the word might be, is an honor and a privilege, and an important place in the community).

We got together in the morning, and ate potluck breakfast. We had asked folks to bring pieces of colored fabric that could be torn or cut into strips, and some of us had taken some time in the morning to cut the many colors and textures of fabrics into strips. We sang some songs together as usual. Then, we had my mother sit in a chair in the middle of the space. As my mother sat in the middle, on her chair, each family in attendance, in turn, approached her (her name is Susan, or Grandma Sue), and gave her a kind reflection, and handed her a piece of the torn fabric. She had been instructed to tie the strips together as she was handed them. I don’t remember exactly how many families were in attendance, but there were enough that when each family had shared their kind reflections, she had a long, long rope of tied together fabric strips.

Then, as she held one end of the fabric, all the rest of us sang Que Sera Sera, a song that my mother loved (it was originally sung by Doris Day, and my mother was about 12 when it was on the radio, in a time when we were all connected by the songs that came over the radio).

My mother stood. We all sang, and wound the fabric around my mother, until she was all wrapped up in the kind reflections that folks had given her. And then, we unwound her, still singing, and then she walked around the families gathered and wound the fabric around the community, and it was long enough to encircle us a couple of times.

I wonder how many people remember that crone ceremony for my mom, or any crone ceremony for anyone’s mom, for that matter. She still remembers it, I’m sure, and I do too. For some, becoming a crone, or welcoming one into the community, is an important rite of passage–a recognition of having lived life fully, and of having a certain kind of wisdom that only comes from living a long time, and the importance of that wisdom to the community.

And what, then, was done with the fabric? Was it discarded? If you know my mom, you are fairly certain it wasn’t discarded. No, my mom proceeded, over the course of several months, (when she was also consumed with the many sewing and knitting and crocheting projects that she’s always consumed with) she turned the fabric strips into a quilted banner to represent the community. We used to carry it in front of us in our annual Spring Parade (you participate in an annual Spring Parade, don’t you? Doesn’t everybody?), and it was draped over the donation/announcement/signup table at our Sunday gatherings.

So as I uncovered the box that contained this emblem of a certain moment in a certain community of people who had chosen to gather because they loved to sing and move in community and recognize the cycles of the seasons and the ways people change, I admit, I cried. I had a moment. And because of how my particular brain is wired, it just made sense to share this moment with the community of people I find myself within now, who may or may not understand what I’m sharing, or what I think is important about a moment like this. I think about all of the moms in my community, and of all of the moms who might have moms that are moving toward the crone realm of their lives, and I wonder if they would appreciate being recognized in ways like I’ve described.

A crone represents a certain type of neurodiversity, and this community is organized to recognize the value of all of the different ways our brains are organized or disorganized, or differently organized. It used to be that to be old was a certain type of neurodivergence, because it was rare for people to live past a certain age. To be older is not so rare any more, but still worthy of being recognized for the value of simply having lived through many cycles of seasons, and styles of communication, and changes in hormone balance, and attitudes toward difference.

I share because I see something of value that I’m not sure the people around me see, and it’s just my brain’s wiring that makes me think that’s what I’m supposed to do.

In a neurodiverse community, all are welcome, all are recognized as having a unique perspective, and something of value to offer to the community. And we can, if we pay attention, and if we show up, recognize uniqueness within a community as having value, especially in a time where sameness is centered and strived for.

Thanks for listening. Thanks for showing up. Thanks for recognizing the value in the many ways of being a human being in the community we find ourselves in.

a word to the wise:

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if one aspires to advocate, one is wise to watch the baby.

the baby is the perfect advocate,
advocating directly for their own needs.

(may all our babies’ needs be met,
directly)

one is wise to meet the baby’s needs, directly,
knowing where a baby with unmet needs is liable to be led.

only the wise know this.
(who is listening?)

who hears the baby’s advocacy and jumps to meet the baby’s needs?

only the wise.

(and the wise are very few)

(maybe only you are listening,
wise one)

neurodiverse community

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Affirming neurodiversity is recognizing that, in a musical space, one person is tuned into the soprano register, even though their voice presents in the bass register; another person hears long melodic phrases when everyone else is creating short rhythmic phrases; and someone else’s brain is turning the patterns of sound into physical shapes, and they are internally designing a building. Guess what: there’s space for all of us in the room, and we’re better together when we recognize and support one another’s differences.

Attentional Disengagement

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Thesis: the attentional disengagement family of predispositions is a healthy and strategic set of adaptations within a species or community with strong tendencies to cooperate. In a species adapted to function through tight coordination, the coordinated activity can become prioritized, causing those engaged to lose sight of the emergent reason for the activity.

In a community centered around presence, or balance, (rather than productivity), attentional disengagement provides opportunities for reflection and reassessment, allowing coordinated activity to be fine-tuned to maintain balance in the collective body of the species relative to its environment.

In communities with a strong directional tendency, where coordinated activity is prioritized to achieve dominance over environmental conditions, the predisposition for attentional disengagement will become pathologized, given its function of maintaining balance within a community relative to its environment.

Absent this balancing function, the coordinated activity of the community will effect changes in the environment, as resources are consumed to fulfill the requirements of the activity.

In a social model where sensory differences are embraced and respected, the collective awareness of the scope of the phenomenal world is increased, as information is shared within a connected community. In a social model that is protective of adherence to a narrow range of views about the scope of the phenomenal world, difference is pathologized.

The case can be made that people with deeply different sensory, behavioral, and cognitive differences are aberrational, divergent, and that the choices for integration into the community are a) to shepherd them toward ability that supports collective coordinated activity where it is possible, and; b) to isolate and institutionalize them into cordoned-off care environments where medication and behavioral mediation manage their attempts to connect directly, as they are wired to do.

This being said, my thesis maintains that in attempting to modify behavior to increase functionality directed toward productivity, or in isolating people with deeply different sensory needs, and not caring for them collectively and unconditionally, we isolate ourselves from our capacity to care.

In a system of care where care means a 15-minute doctor visit paid for with every waking hour of labor, people with different sensory needs create friction. But when integrated into a caring co-regulating community, the quality of care they inspire enriches all of us and increases our capacity to respond to one another carefully.

Anecdotal evidence, from parents and caregivers of children with deeply different cognitive, sensory, and behavioral experiences–young and adult children, suggests that that connecting with people with deeply different experiences brings deep joy. Most of the difficulties come with the isolation, the obligation of one family alone to provide all care in one home with limited resources and no opportunities for collective co-regulation. Literally, no one has time to care.

The pathologizing of people with sensory differences is literally a product of our economic and societal model, which prioritizes coordinated activity directed toward productivity over presence and balance within our environment. I believe that studying other existing, historical, and theoretical economic and societal models, with different, non-pathologizing views toward people with sensory differences, will support my thesis.

Thank you for your consideration.

Wow

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I was in Taqueria La Familia today,
having an excellent pescado burrito,
and listening to the cumbia that was
coming over the radio, when…

Kristi Noem’s DHS spot totally killed the vibe.

I can’t believe they are selling ads like that in California,
but I guess these big media companies don’t care.

She literally says
“YOU ARE NEXT” and
“YOU SHOULD LEAVE THE COUNTRY NOW.”

I have left the country,
(in my heart)
I’m not at home in any place where
words like that
come across the radio.

Radio has been a kind of church to me.

It’s hitting me hard, what’s happening.
I’m here,
and I’m crying a lot,
and you’ll mostly find me
in person.

#nolongeramerican #myheartismyonlycountry

Portrait of a Scientist (early 20th century)

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He was probably a university student, or a post-doc, or maybe already a professor.

He was probably married and probably had a new child at home,

(and might have even had an idea of what university he hoped his child would attend).

He was probably an only child, or if he had siblings, was probably somehow isolated from his siblings–

(maybe because of the way he thought, or acted, or experienced the world)–

(he was just a child in his environment)–

they might have called him awkward, or deviant, or different, and maybe even criticized him harshly, and might have neglected to look at certain parts of him with loving eyes.

He was probably criticized harshly by a well-intentioned but misguided teacher or parent,

(whom he probably loved),

for tap-tap-tapping his pen when he was deep in thought during exams.

He was probably criticized harshly for daydreaming by another teacher or parent,

(whom he probably loved).

He was probably feeling the anxiety of his wife–

(as the wife of a university student, or post-doc, or professor, with a new child at home, is probably going to feel a lot of anxiety, truth be told),

(which he probably hated, knowing his role in that anxiety)

–anxiety about the ways her husband’s schedule isolated him from the family, and anxiety about the ways his eyes didn’t meet her eyes lovingly, and seemed so unemotional,

(and about the ways she didn’t understand how she could be a loving mother and still lack so much understanding of her child, and feel so much anxiety),

(which, as we know, is just the nature of motherhood)–

and she probably felt bad about it–

(and the child was just a child in their environment).

His wife might have been very religious, or at least she might have felt a lot of conviction,

(there’s often a conflict between conviction, religious or otherwise, and scientific inquiry),

which added to her anxiety, and his,

(and added anxiety to their child’s environment).

In feeling this anxiety deeply, she might have criticized her husband harshly,

(as she probably felt criticized by his very existence, though she probably wanted to express herself lovingly in the spiritual language she was given, if he would only meet her eyes lovingly, and make the space for the spiritual language of love she was given),

and in receiving this anxiety deeply, he probably defended science,

(not knowing how to hold both sides),

and criticized her harshly.

He probably wanted to say something to soothe his wife, but the words would never come at the right time,

(or awkward words might have come out, that seemed to make things worse, despite intentions),

and he felt bad about it.

Enthusiastic about the new language of science, he was probably mistrustful of religious language,

(and not trusting strong emotions, due to being harshly criticized for having strong emotions as a child, mistrustful of emotional language as well),

further divorcing him from the world of his wife, and his ability to meet her eyes,

(lovingly, with his eyes, and come up with satisfying language to express his love),

and all of the wise language of the past, in every language,

(divorcing him from the past).

The language of science, he probably believed, was the wisdom language of the future, and this belief probably caused a certain dynamic to happen:

Being divorced from his connection to the wisdom languages of the past, he probably felt compelled to create the wisdom language of the future.

So, in the course of his study,

(which was probably the study of sensory, cognitive, and behavioral differences in children),

when viewing a child brought in for viewing by a concerned parent,

(who was just a child being a child, in a clinical environment, at a moment in time),

with all the traits that in himself had been criticized harshly, or that he had anxiety about, or simply didn’t understand the nature of, relative to time and relationship–

delayed speech, social awkwardness, heightened sensory response or sensory processing difference, gender- or sexual-nonconformity, extreme behaviors, repetitive motor expression, deep knowledge of a special interest, tendency toward routine, differences in eye-expression or affect, cognitive disengagement, hyperfocus, slow emotional processing, nonsensical or novel language processing, cognitive dissonance

–and blind to himself,

(because objectivity, by nature, is blindness to the self),

and isolated from the ways that the wisdom of the ages might have made sense of a person with these traits, he created new language to represent the combination of traits he was viewing, as expressed through this particular child, at a certain moment in time,

(being that his thesis was due, and he had to come up with something novel):

Autism, possibly with attentional disengagement, with comorbidities of gender dysphoria and possible homosexuality. Investigate possible narcissism, or emotional immaturity, and possibly unbalanced sensory processing. Probably undeveloped moral sensibility, possibly brought on by the parents’ insecurity.

Let’s stop, and reflect,

(and in reflecting, possibly reframe):

In looking only forward, with hyperfocused eyes, and in trying to be objective, he missed the part about himself.

He was nothing, if not a well-intentioned parent,

(and the child was still just a child).

And, like all well-intentioned parents, sometimes we get things so backwards.

But in recognizing the point of view of the scientist,

in context, we can

(hopefully)

forgive all of his projections, and his well-intentioned but misguided ideas about children, and childhood, healthy and unhealthy traits and what it means to be a healthy child in a loving environment,

(and all of his anxiety about relationships, and reliance on routine, and emotional stuckness, and failures to articulate, and failures of eyes to meet the world lovingly, in trying trying trying to understand); and

(certainly)

it’s easy to forgive the scientist’s wife, with all she was dealing with, in relative isolation; and

(hopefully)

we might even forgive the scientist’s parents and teachers, whose harsh, well-intentioned criticisms so affected the scientist and his point of view; and

(hopefully)

we might even forgive the harsh, well-intentioned convictions of his wife’s religious parents and teachers,

(which resulted in so much anxiety and conflict and cognitive dissonance).

And in recognizing ourselves in our own mistakes, we always have the opportunity

(hopefully)

to forgive ourselves:

to pause, to reflect, to reassess, to connect with all of the wisdom that the ages have to offer,

(including the language of science),

and to step backwards, with loving eyes,

(even when it’s awkward),

into a new understanding.

How could the scientist’s diagnosis

(based on what we now know to be a moment in time within a historical and emotional context in a clinical environment)

be reframed, in light of this new understanding, that includes forgiveness, and time to develop, and an environment to move around in freely?

Child shows emerging language with delayed but steady progress. Social style is unique, with moments of awkwardness typical of age. Strong sensory awareness observed, with vivid responses to environment. Repetitive motor play and preference for routines indicate self-soothing and learning strategies. Shifts between disengagement and deep hyperfocus reflect flexible attention patterns. Emotional processing is ongoing, with gradual maturation expected.

Is this reframing any less accurate or concise? Does it come with less anxiety? Are we noticing something intimate? Something that moves toward ease?

Are we noticing a possibility

(or even a probability)

of how the future might actually work, for all of us?

We’re all right here, in this very environment,

(and still, all children are just our children)

and opportunity is all around us,

(and within us).

tldr; never summarize the plot of a story into a moral–that’s the work of life: in resolving life’s complexity, within ourselves, we find our unique way of being in the world around us,

(and within us).

circle of gratitude

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Certain teachers teach to those who learn easily:

Let’s applaud such teachers.

Uncertain teachers learn from those with difficulty in learning, and teach accordingly.

Let’s applaud such teachers doubly, and pay them accordingly.

There are those who find themselves overwhelmed by the role of teacher–who lose their sense of who’s the teacher and who’s being taught.

Let’s strive to be overwhelmed like they are overwhelmed, and pay them overwhelming amounts, accordingly, despite what we think they’re worth.

More than overwhelming amounts. More than our thoughts can think they’re worth.

Because they’re worth more than we can imagine they’re worth. And we might not actually deserve them.

But they do it anyway.

The overwhelming urge to applaud and pay back our overwhelmed teachers and caregivers has a name.

It’s called gratitude.

And gratitude, truth being told, has needs of its own. Gratitude needs fulfillment.

And what does gratitude’s fulfillment look like?

Gratitude’s fulfillment looks like care. And not just care, but caregiving. Gratitude, fulfilled, results in giving care. This is the circle of gratitude.

Complete the circle.

In feeling gratitude for our overwhelmed teachers, we give care until we feel overwhelmed with giving. In this way, we experience community in feeling overwhelmed with gratitude, together, and we care for one another.

And in feeling overwhelmed together, we care for one another, together, and in so doing, we might find our way to fulfillment–peace.

Overwhelming peace, in caring for one another.

Knowing this, what teacher wouldn’t want to be easily overwhelmed with the care they give?

Knowing this, what giver wouldn’t want to be easily overwhelmed with caregiving they enable through their giving?

Giving. Teaching. Overwhelming. Care. Learning. Giving.

Complete the circle.

What else is there?

(Peace is in the middle of it all)