Trigger Warning: I'm gonna go with gaslighting and access fails?
I'm doing it. I'm writing up my memory
of the Autreat debacle. There's an official report on the ANI
Facebook, which I can't link properly because of fun with my proxy
and the Chinese internet. I'm bystander 2 in that, which is totally
inaccurate but hey.
Heads up that K is Neurodivergent K of Radical Neurodivergence Speaking, since I know her blog URL here's that, as of this writing her write-up is in seven parts and the most recent stuff pile on her blog.
So here's my memory. Some of this is
before Autreat.
I had K's thing about what to do if
she's having a seizure. It's very much written in K's style, which is
fine by me, I understand it fine. One of the things that stood out
was that if she's having a seizure, people need to back off.
Unless there's a reason that she must be touched, like about to walk
into traffic, or if she's still in the room with the trigger, hands
off, and if must move, slowly, carefully, calmly. Which means keep
security, etc, off K's case in emergencies. We established that I
would be a person who helped run interference in emergencies, keeping
people away from K. That's background.
Now
flash forward to Autreat, in the room where the incident began. Stuff
is a bit fuzzy, because that happens when I'm overloaded, and also
this was a while ago. I remember a not-particularly-coherent K
sounding scared when there was a bass sound, and I remember her
trying to get at medicine of some sort, and I remember her hands
going over her ears. I remember someone going over to the TV to turn
it down, and I remember that person getting yelled at. I also
remember a lot of yelling happening after that. The first yelling was
definitely the person being upset about the TV being turned down
because of her daughter. I can say that much. Order gets a bit fuzzy.
Speaking isn't a thing that was happening much for me, again, happens
under stress. Pretty sure K was out of the room by the time a
sarcastic comment was made by Shaun of “because autism means we can
only care about ourselves,” which got responded to with “Exactly.”
Not with a thing about etymology. Just agreement. At which point
there was a question of, “If you think that, why are you here?”
Again, not a statement. A question. Considering the statement that
was just made and what Autreat is supposed to be about, a pretty
reasonable question.
When K
did the whole leaving the room thing, the person who yelled about the
TV being turned down at least started standing up. So I was pretty
sure that this was a move to follow. So I put myself such that to get
from sitting on the couch to the door, she'd have to go through me.
Not attacking her, which is probably why I got called a bystander and
not a support person, even though I was doing exactly the support job
that I was supposed to be doing, but hey. It also might have
something to do with my never having yelled directly at this person,
which shouldn't be a defining factor of who is and isn't a
support person for K. Really
shouldn't. Those are guesses for why I might have gotten called
bystander 2 in the official report, but I'm not actually sure. Not a
mind reader, can't know. What I know is that it's not accurate.
Yelling
yelling yelling, couch person yes acting like she might be triggered,
bystander in the kitchen area acting possibly triggered and I think
saying openly that she was, and me being a bit confused because why
would someone who has their PTSD triggered by yelling be the one to
start the yelling? I mean, people getting angry and forgetting stuff
like their own limits happens, yes, but it's still a little confusing
to watch a person do that.
Eventually
leave kitchen and I forget what.
Eventually
text from friend of K using K's phone (I know this because I just
checked my phone text history.) Go find K, who I think is in common
area of her floor crying at this point? Help acquire food for her and
also acquire own food, per request of K's friend. Food important.
People coming, people going. Time passing. Meeting. Lots of yelling
about not assigning intentions. Sometimes this happened after person
repeating intentions that person doing action had actually stated,
which isn't actually assigning intentions. It's taking word on
intentions. Lots of suggesting that thing is about use of common
space. Which yes, is problem, but big problem is about how to handle
access violations once they come up. [And seriously what is with
refusal to accept that TV is a want and not a need? I do not
understand, but as I'm not a mind-reader I'm not going to understand.
But yes, that was one of the things that we weren't allowed to say,
that TV is a want and not a need. Also question about adult
daughter's agency, which, um, no one's talking about what she did
because she didn't do the things that were problems?]
Lots
of confused. Lot's of K crying. Lots of “NO DON'T REDUCE THIS TO
USE OF COMMON AREAS.” Because yeah, that's a thing. But there's a
lot more than use of common areas. Use of common areas could have
prevented the thing, but this was about how to handle access issues
once they happened, I think. And went badly.
Lots
of discussion of how triggered person who yelled about the TV being
turned down was. Not so much about how K could easily have wound up
in the ER, and how “you're not going to die”
is a thing that was said to a person who's been clinically dead from
seizures before. Suggestions that statement of daughter having
seizures was meant as understanding the problem. Given demonstration
of not understanding (see also: you're not going to die,)
would be a false demonstration if so. Again, not mind reader, but is
pretty clear that telling a person with epilepsy who has been
clinically dead of seizure before that they're not going to die
indicates a lack of understanding.
Um.
More discussion. Goes to very late. Not good- lack of sleep can make
epilepsy stuff worse, I remember this from another time I was with K.
Morning.
I see text from K, and respond assuming that I missed a text from
last night. Nope. Is text from this morning. K crying, not sure she
feels safe to leave room to come meet with me and another person
related to a meetingful thing I don't even remember properly. I know
there was supposed to be a meeting because text records, and also
that K says she is feeling gaslit. I think I help acquire the soggy
breakfast for K before spending much of morning in K's room, but am
not sure 100%. I know I got to attempt eating said soggy not that
great breakfast, and yeah, it was soggy before the rain got on it
too. That day was not a good breakfast.
Spend
morning with K. Lots of crying happening, decent bit of K hitting
head against wall and saying she wanted to go home and being
triggered and being in meltdown. I admit that I am impressed with her
ability to maintain crying that long, as I become exhausted much
faster than that. I also try to be comforting. I don't think it
worked very well. Apparently my saying that I'd understand if she
left and couldn't be my first witness made her feel really bad about
maybe not being able to do it. My understanding was a sign of my
being a decent enough person for her to care, or something similar.
My memory is a bit foggy, but it was something along those lines, and
this is her having said something of the sort, not me mind-reading
it. Also, there was wailing of “I don't know.” There was a lot of
that. And being afraid to leave room unless it was to go to the
airport and get on a plane home.
Go
acquire food for people- I am in the Subway contingent that acquires
food for many room people. I think we got a total of 4 sandwiches,
including mine an Ks and also one for the person who was driving. One
other, and yes, I know who, but don't know if she's cool with name
reveal so I won't.
Eventually
there is a Jim. Who isn't going to apologize for the gaslightyness,
or for much of anything if I understand correctly. Which, hey, at
least honest, since fake apology is bad and K's pretty clear about
not wanting those. But also suggests not understanding what went
wrong. I wasn't processing in real time for this, and the only person
who was, Jim said either that person or Jim had to leave. After
wailing “I don't know” from K multiple times, another person
suggests maybe that person leaves. I will take K's word for it that
the kicked out person's name is Shaun, and that this person is cool
with name being open. Shaun looks at K, asks “Is this what you
want.” K wails “I don't know” yet again.
There has been a lot of wailing of “I don't know”
this morning and into afternoon. Starting to wonder if there are any
other phrases K can currently access, at this point. Which is bad
sign. Focus is very much on “there are number of people waiting for
presentation” and not so much on “how to we make K feel safe.”
That's not a good sign. K moves from wailing to moving really fast,
but since I'm not processing in real time I don't quite get what's
going on.
Go to
presentation room with K. K gives presentation. It is very good.
Apparently this is because K's autopilot is very well-tuned. That
good of an auto-pilot does not happen for good reasons. Text record
suggests that swimming happened in between presentation- for sure
that I did that, possibly K too, but I don't remember if she did or
not. I shower, brush hair, go to K's room and K fancy-braids my hair.
Nothing
bad particularly happens at 5A, though I was only semi-coherent for
it. Usually I can make words off the cuff pretty well, but not then.
So I was left with not the words I was was expecting to have.
I
spent sufficiently much time in K's room instead of mine helping her
try to feel even a little bit safer during Autreat that all my
chargers were in her room instead of mine. I think that should say
something.
In 2020 hindsight, I should never have gone to Autreat that year, and been Sara Willig's "taxi" to/from AUTREAT.
ReplyDeleteI apologize for anything I have done.
Tom Wood,
Board of Directors, ABLE-NH