This article explores the conditions and principles of the heroic system in folk oral creativity, as well as the tools and weapons that help establish this system. The study examines the manifestations of heroic motifs and the use of combat weapons in the epics “Alpomish” and “The Birth of Gorogly.”
Keywords: Heroic system, folk epics, patron saints, inert society, celestial bow, auspicious birth sign, heroic suffering, figure of Khidr.
It is well known that in heroic epics there exist figures of alp heroes—brave warriors who devote their lives to defending their homeland. The main distinguishing feature of heroic epics, which separates them from other types of folk narratives, is the presence of the heroic system that embodies constant ideals and immutable values in the collective consciousness of the people. The heroic system represents the artistic expression of the unity of concepts characteristic of heroic epic creativity. It is unique to this genre and rarely appears in other narrative types such as legends or fairy tales.
Below we will examine the main conditions and criteria of the heroic system.
1. Divine Patronage Before Birth
First and foremost, the future hero is believed to be under the spiritual protection of divine beings or erans even before birth (in ancient epic tradition, the alp was considered a direct descendant of the gods). For instance, in “The Birth of Gorogly”, celestial beings such as angels, spirits (chiltons), and Khidr, the leader of the erans, play a guiding role in Gorogly’s birth, upbringing, and heroic deeds.
Similarly, in “Alpomish,” the hero’s divine favor and spiritual guardianship before birth is described as follows:
“After forty days, a voice was heard from the garden:
‘Boybo‘ri, God has blessed you with twins—a son and a daughter.
Boysari, you have been granted a daughter.
When you hold a feast for their birth, I shall come as a wandering dervish and name the children myself.’”
This scene reveals that every alp possesses a spiritual patron—a guardian or mentor figure symbolizing divine guidance.
2. Prophecies and Omens at Birth
The second criterion involves the hero’s birth under an auspicious star or celestial sign. Often, priests or soothsayers from rival lands foresee the hero’s arrival and attempt to destroy him. While this motif is not vividly depicted in “Alpomish” or “Gorogly”, it is indirectly referenced in Alpomish:
“When the enemies heard this, they said:
‘This boy is extraordinary, blessed with divine favor.
None can match his strength—even at seven years old he performs mighty deeds.’”
This acknowledgment reveals the enemies’ sense of envy and helplessness in the face of divine destiny.
3. The “Pain of Heroism” (Alplik Dardi)
As the hero matures and surpasses his enemies, he experiences the pain of heroism—a spiritual trial that represents both individual and collective renewal. In Alpomish, this is reflected in the “zakot” (tribute) motif, symbolizing the hero’s moral and spiritual testing. The hero becomes both the redeemer and the sufferer for his people. His mistakes and triumphs mirror those of the entire nation. Thus, the pain of heroism becomes a metaphor for the ethnos’s rebirth and awakening.
4. Connection Between the Hero and the Erans
Another crucial feature of the heroic system is the relationship between the alp and the erans. The erans spiritually strengthen the hero’s body and soul through divine light and sacred drink, granting him supernatural powers. They teach him the mysteries of heroism and reveal his earthly destiny.
In Alpomish, this connection is manifested when Alpomish receives his bow from the erans, when he spiritually unites with Barchin, and in the guidance of his elder companion, Qultoy. Qultoy declares:
“The mark of Alpomish is this:
On his right shoulder lies the imprint of Shahimardon Pir’s five fingers,
And on his left, my own hand’s mark remains.”
Thus, the heroic system forms the very “spine” of the epic—embodying the idea that true heroes are those whom even death cannot defeat.
5. Sacred Weapons and Companions
In epics, heroes are never alone—their loyal horses and supernatural weapons are constant companions. These instruments not only assist the hero in battles but symbolize divine power and destiny. As folklorist Shomirza Turdimov notes in “Uzbek Mythology and Folklore”, the heroic system can be reconstructed through twenty-one features observed in “Alpomish” and “Gorogly.” Among these, two central attributes are highlighted:
The heroic horse that accompanies the alp through trials and transformations.
The sacred weapon received from divine beings or through ordeals, symbolizing the hero’s spiritual strength.
In “Alpomish,” this takes the form of a “fourteen-batman celestial bow made of birch,” while in “Gorogly” it appears as the “fifteen-batman sword bestowed by Ghaus al-Ghiyath.” These weapons transcend the material realm, embodying the hero’s divine mission and identity.
Conclusion
The heroic system is an inseparable component of every epic. The actions of heroes—protecting peace, restoring justice, and defending their homeland—deserve eternal reverence. Through their depiction as symbols of unyielding will, strength, and courage, the alps inspire younger generations to cherish and take pride in the heroic legacy of their ancestors.
References:
Alpomish: Uzbek Folk Heroic Epic. Narrated by F. Yo‘ldosh o‘g‘li, recorded by M. Zarifov. – Tashkent: Sharq, 2010, pp. 93–94.
The Birth of Gorogly: Uzbek Folk Heroic Epic. Narrated by Muhammadqul Jomrot o‘g‘li Polkan. – Tashkent: G‘afur G‘ulom Literature Publishing House, 1967.
Turdimov, Sh. Uzbek Mythology and Folklore. – Tashkent: Fan, 2023.
Jo‘rayev, M., & Eshonqulov, J. Introduction to Folklore Studies. – Tashkent: Barkamol Fayz Media, 2017.
Mirzayeva, T., Turdimov, Sh., Tillayev, A., Jo‘rayev, M., & Eshonqulov, J. Uzbek Folklore. – Tashkent: Malik Print Co., 2021.
Turdimov, Sh. Uzbek Mythology and Folklore. – Tashkent: Fan, 2023.
Madayev, O. Uzbek Oral Folk Creativity. – Tashkent: Mumtoz So‘z, 2010.
Rahimberdiyev Ozodbek was born in the Bostan district of the Republic of Uzbekistan. He is a student at Andijan State University, Faculty of Philology, majoring in Philology and Language Teaching: Uzbek Language. He is a member of international organizations. His creative works have been published. He is a student and an online teacher. He holds international certificates. He writes poetry and articles. Many of his students have received national and international certificates.
Like a cold darkness, love stretches me upon its rack.
Your shadow drinks my breath.
My bones remember your touch.
Within me, centuries collapse without you.
Like spilled gold, my sorrow flows.
Your eyes — two abysses above my soil.
My heart bears the shackles of your silence.
My skin is a book of your wounds.
I have written you in my own blood.
I have carried you through my own ashes.
Into your voice, I placed my final peace.
And when I sink, your shadow will remain in me.
And when I fall silent, I will still long for you.
Milana Momčilović was born on April 4, 1999 in Vrbas. He currently lives in Srbobran, a place near Novi Sad in the Republic of Serbia. She published the collection of poetry TALISMAN.
She doesn’t like to talk about herself, so in the end she can describe herself through the verses of Sergei Yesenin: “What am I?” Who am I? I’m just a dreamer, whose sight fades in the fog and mist, I lived along the way, who can dream, like many other people on that earth.”
My heart is crushed, undone by the weight of grief
but my soul is tiny blooming. Let it be key.
Let everything be where everything needs to be.
Both are real. Only one will have authority
and receive my attention, elixir formed, a trickle,
ingested.
IV
Drum beat
no beat
I raise my arms
and scream hosana.
The drawers are empty
hunger parts my soul
into quarters. Stand up
and take account, no one
is listening.
Four months of stagnant emotion,
upheaval at the roots, planted again
somewhere less familiar and less fecund.
Faith and despair overlap, cross paths, join
together as a new entity.
Who understands? There is no understanding
to be had, only the ceramic bird on the shelf, winking,
and the air, heavy and humid one minute
and cold, oxygen-free, the next.
In my mind is an argument
existential, without possible resolution.
In my core there is shock at the terror
of disintegration, and for how long?
How much more? And still there is more.
In my being, I knew God
came with mercy, with Jesus and the peace
of infinity – washing clean, a soft joy
without degrees but only flowing, showering, eternal.
In between I wake up and I cannot see forward,
I listen, but I cannot be one with what I hear.
Holy Spirit, holy, do not escape me,
be clear, re-construct my devotion,
find me my union seed, to plant and tend to
simple devotion.
V
Jesus, you let me live.
I will sit with you
hand in hand.
I know you
in my personal crisis –
faith obliterated, reseeding
in a lucky garden.
I will trust you with all my problems,
with my anxiety like a dysfunctional
city, polluting the roadway, the airway
with its violence and indifference,
I will breathe easy, knowing you are here,
that you own it because I give it to you
and reckoning is rescue, in your hands,
miracles are coming – life changing,
a kinship with your divinity.
You are sovereign, my still-point, my doorway
into perpetual redemption.
I will collect the fruit and sit beside you,
eating together – no hunger, no hurry –
You and I, I with you, you
holding my hand.
VI
When I see the unseen
in a twisted longing
death-circle fantasy,
irresistible hope,
and drive to make that hope happen
even though
I am not a citizen of that land,
not meant to come forward
and shine with those deeds,
then I fail and live for an
illusionary future, creating a
hellish now, ripe with lack
and disappointment.
Bend on your knees, bow
to the one-name of God,
feel the slap of sobriety,
the consequences of depending
on your own wit and power
which is like a gnat trying to cross through
a tornado or a choir that sings without
glorifying.
I am learning that being conceived
and being re-conceived
is the cure for fear, the fire
that watches a greater fire,
burning enough,
releasing enough
to rejoice and just burn, a light, a warmth
transient, but elementally,
in this way, everlasting.
VII
It is hard to hold purpose
when purpose no longer holds you
when the single curtain seals the window
blocking the sun and sky,
making you blind so you only touch corners
and never a door.
All things lost their ownership, just wandered
aimless, squandering energy like tossed pebbles,
no pattern, sinking.
Governance failed, was only an imagined
corridor leading to a chaotic marketplace
that doled out meals, lacking nutrients and staying power.
Each shape to take and hold and shift from each day
was hard labour, exhausting to perform,
pretending hope existed when hope had abandoned.
I was not afraid because my fears
were pushed hard into my face,
swelling my eyes so they could only see behind.
Death won out over the light, won obedience –
the middle and opposite, smelling.
Death smells bad
smells like an inevitable succumbing
to rot, betrayal, rendering
endurance useless
and even the holiest of faith debunked.
There is a string before me,
thin and golden and unbreakable.
There is something I see I never saw.
I have collided with the consuming tyranny death,
felt it swerve and twist through
every vein, enter, break my heart,
break the truths I had before.
The string dangles,
dripping down from
of my inadequate cries
and a mangled prayer,
comes shining a faint intermittent glow.
It is small and so am I, minute,
hardly there, but there.
VIII
If I talk again,
I will keep my end-mind twisted
so it cannot speak or formulate
a plan.
I have no constitution for plans
or wherewithal for achieving
human-made provisions.
If I talk again,
silence me into prayer,
conversing only with the angelic order,
strengthened by devotion and the power
of obedience.
If I try to be a player,
remind me of my meek capacity,
sting me with regret and slap me
into a state of surrender.
If I try to enter a world not my own,
laugh at me, call me out
and put me in my designated low-chair place,
a dreamer, advancing
no further.
IX
Falling away like before
launching water at the moon
then releasing it, scattering it
onto a lifeless surface.
Songs and singing are murderous,
selling the false business of a buffet
inspiration, and poetry, like a sober
prayer or pleading, blossoms in a place
where no one comes or looks or even cares.
Things that once stretched
with divine determination towards health,
now fall backwards into addiction and defeat.
Chaos always hovering at the entrance door,
violence a few footsteps away.
Idealism once trapped in my mind has sieved through
incrementally and now in my mind, a faint flow
of tainted possibility, mostly consumed by despair, mostly
non-existence, more hesitant than youthful,
more resigned than risking.
The days drive on the same,
and how I wish I was in a state
of conspiratorial superiority
or in a social bliss of nonchalance.
How I wish I could be like I used to be,
believing despite the odds,
calling for help and receiving it.
What is this weakness,
this futureless waste of now,
pressing on all my joints,
an aching misery perpetual?
What are these days
when I can find no hope
to master this tortuous doom?
I am removed. A thin slice everywhere
between me and reality. Only sorrow brings
me near enough to touch, only happiness lives
inside my dreams or in my memories,
stripping the peel from the fruit,
dropping it to rot in the mud-marsh with the rest
of my wearied hold on merciful possibilities.
X
I don’t see
the far-reaching joy
to build a future on,
just disappointment, false-starts,
isolation and how can-that be?
I don’t see
but I know the builders take their time
to make sure what needs to be aligned
is aligned, that broken hearts can
become hardened hearts
and hope is dangerous for those who are desperate,
perishing at the foot of the mirage.
But there is a noble prophesy to follow,
to stand by and wait for.
There is true love, love that alters bitter grief
that wraps your love in its healing balm until
it blooms and your dry throat is
finally soothed, your wounds are rewarded,
transformed into strengths exposed,
safe on the marriage altar.
XI
Time does not help
to lessen the sharp scream
of amputation, or to help gain
a way to cope, maimed as I am,
lacking resilience.
Prayer does not answer
any questions or bury the emptiness
outside of my body, allowing
room that can be filled, even with only
a faint groaning microscopic creation.
Love that sits beside me,
day-after-day, holding my hand,
stays with me – miraculous devotion –
helps while it is there,
but does not stop the welling-up of sorrow,
that will not ease or be appeased
in solitude or by distraction.
Faith is a word that sparks
but cannot ignite. I sink down again
on my broken knees. I cannot rise.
I try and I try, but
I cannot overcome.
XII
God do you love me?
Everyday I fall short
of receiving your love,
blocked and stalled and wading
knee-deep in sewage mud.
I cannot take a step. I cannot
hear you anymore or
feel your mercy move the spoke
a mile, an inch, a fraction of
a way out of this criminal sleep,
arrested every day.
I try to take a breath,
try to step but I cannot
move. Please God, show yourself
to me again. I am aching all over,
joints on fire, mind – ablaze in jet-fuel burning
heat, tired all the time, cut off
from your glory.
Cut off no matter my prayers
and my pleas.
Please God, take my hand,
recognize me as one of your own.
I long for you.
I need your grace
to lift me, now,
trumpets calling,
advancing, only with you,
loved, permitted.
XIII
A hive blasted
by poison.
A blood-letting
in crave of a cure.
Two close-together cliffs
jumped across, looking
closer than they are.
In the whirlspin of a fall –
arms broken, extremities blasted,
crying out for someone from the angelic order
to swoop down and placate the pain.
But no angel-being arrives and what is broken
remains broken, deformed and starting to heal
that way, into a permanent liability.
Even then, when stuck thigh-deep in forsaken ground,
God is close, washing our cracked bodies,
cradling our defeat, saying
My Love doesn’t always answer with a clean slate
or a put-on spell so all hurt is forgotten,
not a trace left traceable. Sometimes
My Love just sits with you, beside the pain,
lets you know I am here,
here, in the empathetic love of others,
here, in your own resilience each morning to carry on,
here, in your determination to stay close to me
as you anguish and ache,
unable to walk or fully wake,
seeing that nothing turned out
the way you saw it
in your times of highest harmonic resonance
the way
you were sure it would.
XIV
Will you speak to me again
like before death cracked my windpipe
like when death still hovered thick in the air
but you were there surrounding everything
with the weight of your love?
Will you answer me again
cooling my shape, giving back force
to my petering-out flame
so I can grow again, still tied to your mercy
and the joy of having dreams?
Will I know you again
despite my mutations
and the iron that rotates sickeningly
in my core, using my energy
for lesser aspirations?
Will you love me again
and I will know that love
igniting its current through
my every predicament,
bonding me unbreakable
to your side, inside
your privileged embrace?
XV
First thing,
you are here.
I wake up and we are talking,
merged in a matter-of-fact
conversation. My need, my only way
to take a step in the morning.
More and more, without you, I can’t
exist or comprehend a thing.
Then why this endless desert, the
hard bloated boils erupting
every time I do move?
How is it, you are here, but there
is so much pain still, so much struggle
just to keep alive?
How do I feel so close to you and need
you more than I ever have, have you
more than I ever have, with such
drought and trembling-burns burning everyday,
throughout the days, echoing – no medicine, no food,
just you and I in this high heat,
where I am barely capable,
but somehow capable.
XVI
Then the bitter defeat
was burning like a sin
committed, recognized
and unforgiveable.
Then on a hill, heavy with
weighted down legs and
an injury there, debilitating but
unexplained, the challenge came
to walk.
Walk slowly at first, walk like
I can walk even though the reins
are dropped and I have lost my mother,
lost life’s victory over death and the comfort
of an unbreakable love broken,
altered, intangible now as an angel’s skin
or a hope held for decades unrealized.
Walk with my mortal burden, stumbling without
a path, a cane or a flat plane. Twist in my ankle, twist
in my knee, swollen, bloated with a hot fever, walk.
Face a direction, walk, slowly,
commit and make it my own.
XVIII
Soak the born
in their own initial conception
to remember the pure-memory-pockets,
the truth of miracles.
Underline everything that matters
and read it again until no small word
is skimmed over or taken for granted.
Open the shelter doors and let all animals
in, wild ones, broken ones, aggressive and tame.
Free with a blessing
every dream that isn’t false,
and follow your deepest duty –
both desirous and undesirous divine commands.
Under the blanket, conspiracies are made.
They grow limbs that look like light but exclude
humility and the thumb-print of surrender.
The atmosphere is big,
the button-hole is small.
I am small when I toss
my self-determination out as wisdom
and fail at every turn.
Mercy comes with obedience,
obedience comes with trust, and then finally
freedom.
The dying are trapped in their wounds.
The living, in their success at survival,
but the gift is always
open for everyone, and changing
even without core movement.
I have a boat and that is all I own.
I see flowers on the shore, rooted in the sand.
I see yellow and sometimes, I see gold.
Allison Grayhurst has been nominated for “Best of the Net” six times. She has over 1,400 poems published in over 530 international journals, including translations of her work. She has 25 published books of poetry and six chapbooks. She is an ethical vegan and lives in Toronto with her family. She also sculpts, working with clay; www.allisongrayhurst.com
What a wonderful sweetness mixed with mountain trees and shrubs!
Transplanted before my eyes
You are intertwined with a tree for a lifetime
Years are passing by in the wind
The ants are climbing in rows.
Md. Mahbubul Alam is from Bangladesh. His writer name is Mahbub John in Bangladesh. He is a Senior Teacher (English) of Harimohan Government High School, Chapainawabganj, Bangladesh. Chapainawabganj is a district town of Bangladesh. He is an MA in English Literature from Rajshahi College under National University. He has published three books of poems in Bangla. He writes mainly poems but other branches of literature such as prose, article, essay etc. also have been published in national and local newspapers, magazines, little magazines. He has achieved three times the Best Teacher Certificate and Crest in National Education Week in the District Wise Competition in Chapainawabganj District. He has gained many literary awards from home and abroad. His English writings have been published in Synchronized Chaos for seven years.
Mrinal kanti Ghosh, India He is a lyricist for All India Radio Calcutta. He has written many books of poetry, novel and short story. The names of his books are as follows: 1. Atmabairi 2.Sudhu rtis jannaya (Funded by West Bengal government) 3. jodi chole jai 4. Nairite nisarga namey 5.Ami se o somudra (novel) 6. Ekhane akash nei 7.Suranjana (English and Bengali) 8.Chayapathe saresrip bikel 9.Bideshi kobita (transcription of poetry in English and Bengali) 10.Dhupchaya nir 11.Nirjan sayanhey joytshna 12. Shely 1. Bangladesh award 2.Certificate from different countries. He has given certificate. He is a musician. He plays guitar (Indian classical). His other two books are under process. He is also an Astrologer, He believes in Astrology. He also believes in Rebirth/Regeneration. The poet also wrote a rtist poetry on Rebirth/Regeneration. His other book is going to be published on Rebirth/Regeneration.
In the small town there was an old library, a few churches, and even a place where they sold worms for fishing and nearby, in the summers anyhow, a corn stand. I only realized far after that I never brought my bike there, such as in stories and films. If I could go back, I would have, for a bicycle fits a town and one could go on adventures and take more pictures of the local flora and fauna.
Yet I still have much memory in the mind’s eye and a few photos from walking. I used to fish off the shore walls and near little bridges and no matter what theory says, worms always got the fish to bite or at least become curious and nibble more than any metal or plastic lure. There were wooden bridges and stone ones, and moss and rocks and the sun-bleached parts caught my eye whist people generally were friendly and many of them waved.
There was a series of canals and though they go in Northern Ontario it was based off a model of waterways from somewhere in Europe. These waterways, often called ‘intercostal,’ can be found in southern Florida also. They are often secondary homes or cottages, and I suppose that means upper middle class or affluent populaces inhabit them. Or old timers that simply always lived there through the generations. Maybe each situation is unique, and they can’t exactly be categorized.
I remember the winters frozen and sometimes an ice fishing hut or series of them could be viewed as one looked from the purlieu of the lagoon intercostal waterways out to the white and grey lake frozen and crystalline-like under a December or January sky sun laden. That would make a good landscape painting for someone, some soul involved in such, and often as I walk summer fields and meadows or winter hills with vistas, I have the passing thought whimsical of wishing I knew a painter to talk about all with. In fact, I should have lived in older times where letter writing, where true soulful epistolary was the norm. But, in lieu of not having a confident or artist contact I’ll tell here…
The area was big, several square kilometres and none of the houses could have basements for the water could go in and that would be problematic. The dwellings were built on piles, telephone poles wooden and probably chemically stained to preserve them. Some houses were bungalows and nondescript with simple screen doors and others towered over the earth maybe up to four of five stories tall, and those usually had expensive power boats over forty feet long outside of them bobbing up and down a little bit in that lake water.
And it was quiet while someone watched the nice world there and the change of seasons. Boat. Book. Walk. Reflect. Even pray or meditate. Repair a bird house wooden or sit on the porch and watch the world go by. When we went to church, so long ago, the old man that gave the exegesis about the gospels used to say that his goal should be the same for his community. And what was his goal? It was for his maker, his God, to simply say in heaven when the day arrived, to say about the life one had lived on earth, ‘Well done good and faithful servant.’
~~~~~
Brian Michael Barbeito is a Canadian poet, writer, and photographer. The Book of Love and Mourning, a third collection of prose poems and landscape photographs, is set to be released in winter 2025.
In 2019, I underwent a four-hour neuropsychological evaluation with Dr. Kimberly Lanni at Kaiser Permanente. She was never authorized to treat me as a therapist, yet the consequences of that single session have followed me for years. Not because of the evaluation itself, but because of what came after: a fabricated designation in my patient chart labeling me as a safety threat, a misdiagnosis that contradicts multiple other evaluations, and a pattern of conduct that raises serious ethical concerns—including her published autism research at the UC Davis MIND Institute.
I am a transfemme author, editor, and founder of Nocturnicorn Books, a literary imprint that has published 40 books and platformed icons like David J. Haskins, Jarboe, Caitlín R. Kiernan, Ron Whitehead, and Poppy Z. Brite. My editorial persona, Kandy Fontaine, is a glam voltage source for transgressive, queer, and mythic literature. I’ve built an archive that centers the haunted, the silenced, and the divine. And yet, despite this legacy, I am still forced to fear for my safety every time I walk into a Kaiser facility.
The Origin: One Evaluation, Lifelong Fallout
Dr. Lanni’s role was strictly limited to conducting a neuropsychological test—not therapy, not ongoing care, and certainly not long-term behavioral profiling. Yet she issued a clinical judgment that I had Dependent Personality Disorder and Severe Somatic Symptoms Disorder—labels that have since been contradicted by other licensed professionals who found no evidence of either condition.
Worse, she appears to have fabricated documentation that resulted in my chart being flagged with a safety threat notice. This designation is not visible to me—but it is visible to Kaiser security personnel, who are automatically alerted whenever I arrive for care. I’ve never made threats. I’ve never acted violently. I’ve never endangered staff or patients. Yet my presence triggers a silent alarm.
The Surreal Reality of Being Flagged Without Cause
The safety threat label has turned routine medical visits into psychological minefields. I’ve been:
Silently profiled at check-in
Monitored by security without explanation or justification
Forced to relive the trauma of being falsely labeled—again and again
There was no incident. No confrontation. No behavioral justification. Just one evaluation—and years of fallout.
I recently filed a fresh grievance with Kaiser, demanding that the safety threat designation be removed. It continues to cause emotional distress, disrupt my access to care, and undermine my safety as a patient.
Allegations of Professional Misconduct
My experience with Dr. Lanni raises serious concerns about her professional conduct:
Misdiagnosis: Her conclusions were not supported by the evaluation or by subsequent assessments from other professionals
Fabrication: The safety threat label appears to be based on false or exaggerated documentation
Retaliation: I believe this label was applied in response to my questioning of her diagnosis and filing of grievances
Defamation: The label has damaged my reputation within Kaiser’s system and may have influenced other providers’ perceptions of me
Autism Research and Documented Use of Restraint
Dr. Lanni’s published work includes contributions to autism studies at the UC Davis MIND Institute, including the Autism Phenome Project (APP) and GAIN (Girls with Autism – Imaging of Neurodevelopment). These studies involved:
Simulated MRI environments to acclimate children to scanning procedures
Use of mock MRI machines that replicate the noise and physical setup of real scans
Participants as young as 2–6 years old, many with autism or intellectual disabilities
In her own publications, Dr. Lanni and her co-authors explicitly describe the use of restraint to keep children still during these procedures. The term “restrained” appears in the context of preparing children for imaging sessions, often in combination with exposure to loud, repetitive MRI-like noise.
While these methods may have been approved by institutional review boards, their ethical implications are profound—especially when applied to nonverbal, sensory-sensitive, or developmentally disabled children. The use of restraint, even in a research setting, demands rigorous trauma-informed safeguards, transparent consent protocols, and ongoing ethical scrutiny.
In my published critique, Spit Takes, I analyze the language and framing of these studies. The research often pathologizes neurodivergent traits and risks reinforcing harmful stereotypes. The documented use of restraint—on children who may not have had the capacity to consent—raises urgent questions about power, consent, and the ethics of data collection in autism research.
The Emotional Toll
This isn’t just a bureaucratic error. It’s a form of psychological violence. It undermines my ability to access care, damages my reputation within the system, and retraumatizes me every time I seek help.
I’ve documented my experience publicly, including on Reddit, where my posts have received thousands of views. I’ve spoken out not just for myself, but for others who may have been similarly harmed.
Call for Investigation and Justice
I am not a threat. I am a patient. I am a survivor. And I deserve care without fear.
I call on Kaiser Permanente to launch a full investigation into the safety threat designation placed on my chart, and to remove it immediately. I call on UC Davis to reexamine the ethics of its autism research protocols, especially those involving restraint and sensory exposure in vulnerable children.
I call for justice—for myself, and for anyone else who has been harmed by institutional misconduct disguised as care.
