tag:blogger.com,1999:blog-21474384062665550272024-03-17T20:03:28.485-07:00Radical Neurodivergence Speaking<p align="left">When the mob and the press and the whole world tell you to move, your job is to plant yourself like a tree beside the river of truth, and tell the whole world</p>
<p align="center"><b><br>"No, <i>you</i> move."</b>
</p>Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.comBlogger242125tag:blogger.com,1999:blog-2147438406266555027.post-20480199645097806302018-11-01T22:38:00.000-07:002018-11-01T22:38:23.213-07:00Guest Post Autistics Speaking Day Part 4
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<blockquote class="tr_bq">
<i>I'm a bit late to post these today, but they're important. I did not
write them, as they clearly state. My friend Shaun did. They've been
dealing with massive shit as a result of activisming while autistic and
now you all get to read about it. If you are a person named here who
behaved badly, well, if you wanted people to write warmly of you then
you should have behaved accordingly. Content notes for sexual abuse,
ableism, racism, antisemitism, a whole wide varieties of behaving badly.</i></blockquote>
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As
mentioned in the last post, every member of Seattle Disability
Commission leadership (including every appointed person of color) <a href="https://docs.google.com/document/d/1rNWOgAp6M0VqPqG6ZoGUi2fExkZ7kdtmNEm0OpUT3AU/edit?usp=sharing" rel="nofollow" target="_blank">penned a letter</a> outlining major
concerns with racism, misogyny, ableism, misogynoir, retaliation,
concerns for safety, and a lack of support from the Office of Civil
Rights (OCR). We made several asks, one of which is that myself and Meg
Bartosovsky would be placed in Council-appointed seats based on our
advocacy record.<div>
<br /></div>
<div>
Advocates and activists aren't known
for sitting around waiting on elected leaders, though: at our June
meeting, Commissioners nominated and voted me into a
Commission-appointed seat, restoring my status as Co-Chair in the
process, albeit over the vocal objections of Commissioner Eric Scheir.</div>
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<br /></div>
<div>
I
want to pause and address the absence of Meg Bartosovsky from this part
of the narrative. Part of the way that Commissioners have been
individually stalked and harassed is through the use of Public
Disclosure Requests, or PDRs, which we are subject to at public request
like actual employees of the city. Unlike employees of the city, we are
not paid for the dozens and dozens of hours we've spent on this, nor are
we protected from harassment.</div>
<div>
<br /></div>
<div>
Felak demanded
Meg Bartosovsky's texts from a time before she'd even applied to be on
the Commission: she refused. Marta Idowu insisted that she must turn
them over, going as far to go to the City Attorney's office and suggest
that Bartsovsky was deleting public records. She conveyed in a public
meeting that our texts were subject to PDR and was vague on whether our
personal contact information, such as phone numbers and home addresses,
would be as well (we asked for this statement in writing and months
later have not received it). Meg was unwilling to continue working with a
city department that had treated her as OCR had, and also had concerns
about her safety should OCR disclose her address. Those concerns turned
out to be prescient, as I discovered in October 2018 that OCR had
provided Felak with at least my personal cell phone without my
knowledge.</div>
<div>
<br /></div>
<div>
Back to Eric Scheir. Scheir is a
Mayoral-appointment who has personally harassed and defamed myself and
other members of the Commission since Marta Idowu first invited him to a
Commission meeting in late 2017. Scheir has stated he is using the
Commission as a stepping stone to run for public office, and his
appointment seems at least somewhat political: despite not living or
working in the city of Seattle, requirements to be appointed to a
Commission, the Mayor has appointed him anyway.</div>
<div>
<br /></div>
<div>
Commissioners
have noticed a pattern where wealthy white men (without cognitive
disabilities) such as Scheir and Lewis get appointed despite not living
or working in Seattle. By contrast, no people of color were even
considered for the Commission in 2016 or 2017 (ChrisTiana ObeySumner was
the only appointed POC at this time). DorianTaylor was finally
appointed in Spring 2018--and even then, when Taylor moved almost
outside the bounds of the city they were questioned as to whether they
could even be on the Commission any longer.</div>
<div>
<br /></div>
<div>
Scheir's
naked ambition seems to have driven a lot of his decisions--he signed
the letter calling for my removal (and declaring our election invalid)
in April 2018. He interpreted our July letter to City Council as being
all about him (he's 5 lines of a 6-page letter), and exploded at the
August Commission meeting, screaming at the top of his lungs at Co-Chair
ObeySumner and physically intimidating them, as well as threatening to
sue all of us who sent the letter for libel. He objected to even voting
on my reappointment, holding the process up for <i>an hour</i> with his raging outburst.</div>
<div>
<br /></div>
<div>
Scheir
seems adept at disrupting meetings: he managed to interrupt every vote
at the next two meetings as well as to take issue with everything from
the name of the Commission to my continued presence at the Commission.
In September, he called for both of us to be removed and replaced as
Co-Chairs. During the meeting, ObeySumner proposed sending out a doodle
poll over the weekend to find the best date to have our yearly retreat,
which would be a mediation. When they did not send it out over the
weekend (waiting on OCR to give times the mediator(s) would be
available), Scheir immediately sent out a letter of intent to remove
ObeySumner for cause. His attacks on us, on ObeySumner's competency, his
petulant, childlike insistences he should be able to run as Co-Chair <i>right now</i> have been regular and unceasing.</div>
<div>
<br /></div>
<div>
Scheir
and the other members of Steve Lewis' former clique, as well as Felak,
testified against my approval at the City Council's subcommittee meeting
in September. You can <a href="http://www.seattlechannel.org/mayor-and-council/city-council/2018/2019-civil-rights-utilities-economic-development-and-arts-committee?videoid=x98410" rel="nofollow" target="_blank">view their comments</a>
starting 15:03; my comments start at 1:03:45. Aside from the fact most
of their comments don't connect with reality (all of the documents
referring to these individuals are public record and have been linked in
these posts), they are hyperfocused on accusations of racism, and on
attributing those comments to me. In his comment Eric Scheir says that I
have called him white supremacist--but the only reference to "white
supremacist" in our letter to OCR is the action of attributing the
decisions of the Commission's people of color (ObeySumner and Taylor) to
me, something which Scheir ironically does in his testimony, while
claiming that these accusations are attacks on his "disability,
religion, and sexual orientation."</div>
<div>
<br /></div>
<div>
We've had
two recent mediations, during which Scheir aggressively misgendered a
trans Commissioner over twenty times, repeatedly centered himself as a
victim, and alluded to suing us all again. In the meantime, half of the
individuals who signed that letter have quit and the rest of us are at
our wit's end: it doesn't look like this level of harassment is ever
going to abate.</div>
<div>
<br /></div>
<div>
A few things have changed. As
per our request, Marta Idowu is no longer the Commission's support staff
from OCR. After I discovered OCR has sent my number to my stalker, I
discussed it with the Co-Chairs of all five civil rights Commissions,
and OCR has a new policy to inform us first and give us 2 weeks to file a
legal challenge before disclosing our information. And of course OCR is
investing in these mediations themselves.</div>
<div>
<br /></div>
<div>
But
participation in the Commission remains an environment of regular
stress, refreshed by weekly waves of retaliation and harassment. Even
with all I've written, there are things I don't feel safe talking about.
And I know many people will simply see an array of white, wealthier,
allistic, more acceptably disabled, older individuals commenting about
how horrible I am and simply assume I must be the cause of the division.
I don't know what the future holds for me, or if I will experience more
professional retaliation when I've had to fight so hard to even have a
job as an autistic person.</div>
<div>
<br /></div>
<div>
But I'm not ready to
give up yet, nor to cede the world I live in to eugenicists and
narcissists hungry for power for power's sake.</div>
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Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com0tag:blogger.com,1999:blog-2147438406266555027.post-35526649173626166392018-11-01T22:35:00.000-07:002018-11-01T22:35:37.415-07:00Autistics speaking day guest post part 3
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<blockquote class="tr_bq">
<i>I'm a bit late to post these today, but they're important. I did not
write them, as they clearly state. My friend Shaun did. They've been
dealing with massive shit as a result of activisming while autistic and
now you all get to read about it. If you are a person named here who
behaved badly, well, if you wanted people to write warmly of you then
you should have behaved accordingly. Content notes for sexual abuse,
ableism, racism, antisemitism, a whole wide varieties of behaving badly.</i></blockquote>
<br />
I've given an overview of some of the stalking and harassment I've
experienced, from one person in particular. The waters go much deeper
than that, though.<br />
<div>
<br /></div>
<div>
Steve Lewis is the <a href="http://disabilitypride.org/wordpress/?page_id=95" rel="nofollow" target="_blank">Board Chair of the Alliance of People with disAbilities</a>,
the federally-funded Center for Independent Living (CIL) for King
County. Is--he remains in this position despite his public racist and
eugenic comments. What is particularly troubling is, during his whole
eugenic tirade and removal from the Commission, I actually <i>worked</i> at the Alliance.</div>
<div>
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<div>
Knowing
the position of power he had puts him screaming at me, or remarking
that if I were a dog I'd be put down, into a whole new light. It
certainly created an unsafe work environment, and directly put my job at
risk once I denounced him publicly.</div>
<div>
<br /></div>
<div>
Not
content to simply create an unsafe work environment, though, after his
removal Lewis began circulating a letter, trying to get every current
and past Commissioner to sign it calling for my removal, chiefly on the
grounds of "cyberbullying" him (in a final act of chauvinism, Lewis is
insistent that I, as a white masculine person, must have controlled the
women and non-binary POC who signed the letter against him). This
included one of my co-workers, who he used his position to corner and
pressure, and my direct supervisor--he actually <i>showed up at her home</i>. To their credit, both of these individuals refused to sign his letter.</div>
<div>
<br /></div>
<div>
I'm
not going to outline who did sign, because at least one person has
refuted it in writing and claims his signature was used without his
consent, and another person (who has a cognitive disability) claims to
have been manipulated and coerced into signing, and for the most part I
think these individuals' later actions speak for themselves.</div>
<div>
<br /></div>
<div>
Lewis'
letter wasn't taken too seriously, particularly since he immediately
escalated to City Council instead of trying to address his issues with
the Office of Civil Rights (OCR). In the meantime, the Commission still
had an atmosphere and culture of racism, misogyny, and ableism that
many, many Commissioners had complained about in some combination.
ChrisTiana ObeySumner and I, as the new co-Chairs, tried to address
these issues, including having a 2-hour failed mediation with one
individual over his remarks and behavior toward women and people of
color.</div>
<div>
<br /></div>
<div>
Despite nearly a year of working with
the Office of Civil Rights, and escalating some of the safety issues to
City Council, nothing happened. Meanwhile, ObeySumner and I did our jobs
as advocates--one of the issues that I highlighted in particular was
the city's ableist plastic straw ban, instituted without any input from
disabled people and over our continued objections (the ableism in the
city's implementation could have its own article, but it's outside the
scope of this narrative).</div>
<div>
<br /></div>
<div>
Then, in July, I was
informed by OCR's liaison to the Commission, Marta Idowu, that the Mayor
would not be reappointing me to the Commission. When I asked why, I was
told it was because of my criticism of the city's straw ban and because
I was "talking about lighting people on fire on the internet"
(hilariously, the screenshots I was eventually sent were of someone in
California complaining I used the word gaslight, which Idowu
misinterpreted as a threat to light someone on fire).</div>
<div>
<br /></div>
<div>
Then,
within 15 minutes, I was removed from the Commission's mail list,
Facebook page, and website, as was Meg Bartosovsky, the other
Commissioner-in-limbo. The connection between us was our posting of the
straw ban on the Commission's Facebook page; removing us removed every
Commissioner with Facebook access and immediately shut down the
Commission's end of the dialogue in the critical first month of the
city's ban.</div>
<div>
<br /></div>
<div>
I had a lot of questions about
this. What were the reasons I was being removed, really (I would never
be told)? Why did Steve Lewis get a month after spouting a racial slur
in public, get a meeting and an opportunity to walk his comments back,
and then get the courtesy of being told by the Mayor's office directly,
while I wasn't even personally addressed or talked with. Could the
Mayor's office hate mild criticism more than racism?</div>
<div>
<br /></div>
<div>
What
made this retaliation even shittier was the fact that I've done a lot
more than a typical Commissioner. I advocated for the first city ban of
subminimum wage in the country, for which (and for my general commitment
to addressing bias on the Commission) I was awarded as 2018 Advocate of
the Year by Disability Rights Washington. The Mayor's office loves to
take credit for this work--even though the Mayor didn't bother
mentioning me or the Commission when she held a press conference on
it--but not enough to keep around the disabled people who actually did
the work.</div>
<div>
<br /></div>
<div>
I also Chair several committees and
the Commission itself, successfully advocated against the expansion of
involuntary sterilization, and organized an event amplifying disabled
women of color. So given all that, why remove me? Why so fast? Why was
Meg also removed?</div>
<div>
<br /></div>
<div>
The answer I got was that I
wasn't removed, the Mayor merely declined to reappoint me. The Mayor's
Boards and Commissions liaison, Evan Philip, claimed not to know why I
wasn't being reappointed (and if he ever found out, he never bothered to
tell me). But this raised its own questions:</div>
<div>
<br /></div>
<div>
If
I was simply not being reappointed, why the fastest removal from
everything in Commission history? Why not let me finish out my month and
transition new leadership? Why not give the Commission a chance to put
me in one of the Commission-appointed seats? In fact, the Commission had
voted if the Mayor didn't want Meg Bartosovsky we would put her in a
Commission-appointed seat; this action by OCR countermanded that (to my
knowledge to date, Ms. Bartosovsky has never even been contacted to
inform her she was removed from the Commission and why).</div>
<div>
<br /></div>
<div>
Fortunately,
leadership of the Commission organized to keep me and Meg Bartosovsky
involved. The leadership of the Commission was already <a href="https://docs.google.com/document/d/1rNWOgAp6M0VqPqG6ZoGUi2fExkZ7kdtmNEm0OpUT3AU/edit?usp=sharing" rel="nofollow" target="_blank">writing a letter</a>
to Council about the lack of support from OCR; our sudden, undemocratic
removal was folded into the issues we wanted to address with
Councilmember Herbold, issues which were numerous and included concerns
for our safety.</div>
</div>
Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com0tag:blogger.com,1999:blog-2147438406266555027.post-71847910519394801692018-11-01T22:32:00.001-07:002018-11-01T22:32:56.766-07:00Autistics speaking day guest post part 2<blockquote class="tr_bq">
<i>I'm a bit late to post these today, but they're important. I did not
write them, as they clearly state. My friend Shaun did. They've been
dealing with massive shit as a result of activisming while autistic and
now you all get to read about it. If you are a person named here who
behaved badly, well, if you wanted people to write warmly of you then
you should have behaved accordingly. Content notes for sexual abuse,
ableism, racism, antisemitism, a whole wide varieties of behaving badly.</i></blockquote>
<br />
I think a lot of my friends wonder why I continue to bother with the
Seattle Disability Commission considering what a hellish experience it's
been. I bother because it's allowed me and others a platform to make
some truly incredible change (and because I don't get to opt out of
ableism anywhere). One of those changes was leading Seattle to become
the first city government in the country to ban the payment of
subminimum wages to disabled workers.<br />
<div>
<br /></div>
<div>
But this landmark came at a price.</div>
<div>
<br /></div>
<div>
To
give a timeline, I presented to the Disability Commission from
February-June 2017 about the issue. In June, we voted unanimously to
advise the City to end the practice--based also on the unanimous
community comment in support, and the lack of opposition from the
individuals, families, and companies using legal subminimum wage
programs in Seattle (one additional organization, the Northwest Center,
declined to comment. They had several employees paid subminimum wage
without authorization from the city, believing themselves to be exempt
from city labor laws. <a href="http://council.seattle.gov/2018/04/26/the-seattle-office-of-labor-standards-recovers-more-than-40000-in-subminimum-wage-violations-on-behalf-of-workers-with-disabilities/" rel="nofollow" target="_blank">It didn't go so well for them</a>).</div>
<div>
<br /></div>
<div>
The
city's Office of Labor Standards opened the rule up for public comment,
ultimately issuing a rule change prohibiting new certificates in
September 2017 (the two existing certificates expired December 31, 2017;
CM Teresa Mosqueda would push through a law enshrining equal pay
regardless of ability in April 2018).</div>
<div>
<br /></div>
<div>
My first
unfortunate interaction with Cheryl Felak occurred in August of 2017.
Felak is an abled parent of a developmentally disabled adult child; she
is pro-institution (specifically affiliated with the Friends of
Fircrest, one of Washington's 4 state-run large scale institutions),
pro-segregation, pro-subminimum wage, and just about every other
comically evil disability villain stereotype you can think of.</div>
<div>
<br /></div>
<div>
At
the time, I was unaware of her history of harassment of staff of
disability organizations, or her lack of appropriate boundaries with
others, so I made the mistake of engaging her like a person and trying
to answer her obvious confusion about the advocacy process or human
rights in general. When she became abusive, I blocked her and moved on.</div>
<div>
<br /></div>
<div>
In
the time since, she has made literally hundreds of blog posts and
emails specifically slandering my name. She's contacted my employer
multiple times and asked for my removal. She's contacted every city
email she could find, and asked for my removal. She's contacted many
others, advocates and friends, including <i>my partner</i>, to warn them
what a terrible person I am. She has shown up in person at my job to
demand my dismissal, as well as at meetings I attend (including the
Commission). She's also taped me in private conversation without my
knowledge or consent (illegal in WA state) and tried to physically
prevent me from exiting the Commission room, probably hoping to entrap
me into shoving past her to escape so she could claim to be attacked by
the big bad autistic.</div>
<div>
<br /></div>
<div>
Her claims are really
vague and move around a lot. The community (meaning paaarents) wasn't
informed, she personally wasn't informed. That there is not a single
Commissioner with an intellectual or developmental disability, that the
Commission hasn't had a quorum since 2017 (both patently easy to
disprove). That I've lied, that I've harassed and censored her (by
blocking her from contacting me). There's a certain narcissism in seeing
literally hundreds of disabled people oppose a practice but being <i>certain</i> you
know more than all of them, but Felak's behavior goes well past
narcissism and into something frightening. I consider the statistics
around people like her who <a href="http://autisticadvocacy.org/projects/community/mourning/" rel="nofollow" target="_blank">kill their disabled children</a> and
I realize people like her are a threat. At least one other disabled
person, that I know of, has filed a police report when she threatened
their well-being, and she has been banned from multiple online parenting
spaces because of her inappropriate disregard for boundaries.</div>
<div>
<br /></div>
<div>
In June of 2018, I sent her a<a href="https://drive.google.com/file/d/1I5Hb23stxS6dIYptBbQ0KkqQfiX2mDB2/view?usp=sharing" rel="nofollow" target="_blank"> cease and desist letter</a>. Her <a href="https://drive.google.com/file/d/1_qEL342uL_OP8hCHqKmfwMUdNEj-Q7WJ/view?usp=sharing" rel="nofollow" target="_blank">response</a> was immediate, almost joyous: take legal action.</div>
<div>
<br /></div>
<div>
I
did everything I was supposed to. I filed an anti-harassment suit
wanting her to stop contacting me, approaching me, and coming to my
place of work. Unfortunately, my case ended up before Judge Anne Harper.</div>
<div>
<br /></div>
<div>
In the middle of the proceedings, Felak produced her own <a href="https://drive.google.com/file/d/0B1d_cMHH1m9ManlpNjhTLXg2N2JKM0cyUnEzd21jOVhjVy0w/view?usp=sharing" rel="nofollow" target="_blank">bizarre anti-harassment order</a>
against me, demanding I keep away from her work and home (which I have
never been to) and to undergo a psychiatric evaluation. Unfortunately,
Judge Harper denied me my due process rights and decided to hear both
cases at once, without me even having a chance to read the accusations
against me, yet alone have the required 2 weeks to process them.</div>
<div>
<br /></div>
<div>
The
hearing turned into a 3-hour ordeal (5 hours total) where I had to
explain and re-explain subminimum wage and employment policy, all while
my community lawyer racked up fees. Felak also brought <a href="https://docs.google.com/document/d/1NugHuP4h57DVR2L6FLYLrQUIaChtjvJeR0bphDMU0W0/edit?usp=sharing" rel="nofollow" target="_blank">discredited white supremacist and eugenicist Steve Lewis</a>,
the Commission's former Co-Chair, to testify against me. Felak was
actually allowed to read evidence off her phone, over my attorney's
objections, without ever producing a paper record of her claims--Judge
Harper claimed she wouldn't take into account anything that wasn't a
paper record. Lewis was allowed to wax narcissistic about me engaging in
"cyberbullying" to get him off the Commission by weaponizing his use of
the n-word; Judge Harper allowed it as it "went to my character."</div>
<div>
<br /></div>
<div>
Ultimately,
Judge Harper dismissed both cases by claiming that there was equal
wrong on both sides--me, for censoring Felak on the Commission's
Facebook page (I am neither that page's Admin nor do I work for the
city; this is one of many in/actions by the Commission or City Felak
attributes solely to me) and for failing to show Lewis respect by
addressing him as "Dr. Lewis" (he didn't call me Commissioner Bickley or
even Mr. Bickley; respecting Lewis' authority also has nothing to do
with Felak's prolonged stalking).</div>
<div>
<br /></div>
<div>
Unfortunately, Judge Harper is unopposed for election next week. Run for public office if you have that privilege.</div>
<div>
<br /></div>
<div>
Harper
did refer us to mediation over my disinterest, something Felak jumped
on. I declined--there is no middle ground between "don't contact me" and
"I want to contact you as much as I want," and I don't want to
encourage her that disabled people's boundaries are negotiable anymore
than she's been encouraged.</div>
<div>
<br /></div>
<div>
Felak continues to
post about me regularly, encouraging others to contact my employer as
she has. She's posted my personal phone number (something she acquired
through a public records request I was not informed of; the city has not
yet told me if they have given her my home address). Recently <a href="https://drive.google.com/file/d/1jEU8tn1UxP11MNIDNMcEV9ysMxJE7S4C/view?usp=sharing" rel="nofollow" target="_blank">Felak learned I identify as non-binary</a> (something I have never bothered communicating to her or correcting) and has made a series of bizarre posts calling me <a href="https://drive.google.com/file/d/19nO6CblOJzlcnmvU_E_f0-Y1_nGAyqEs/view?usp=sharing" rel="nofollow" target="_blank">dogmatic and delusional</a> for it.</div>
<div>
<br /></div>
<div>
I
have some concerns about feeding the troll. Felak obviously loves the
attention, and loves the sense of power harassment and stalking gives
her over disabled people. But... <a href="https://drive.google.com/file/d/1G4EbEJsclPAcPGb_2tVyrn8bcKUnChlS/view?usp=sharing" rel="nofollow" target="_blank">Felak is a nurse at Seattle Cancer Care Alliance</a>.
She is going to continue to interact with disabled people, including
queer and non-binary people she finds "delusional." She is a guardian of
a vulnerable adult. And she is going to continue to stalk and harass
disabled people, including me. I know she will find this posting
titillating, but I hope it can serve as a beacon to others in the
future.</div>
<div>
<br /></div>
<div>
And besides, she has made every effort
to violate my privacy, publish my contact details, and encourage others
to harass me. Someone like that is due to have the mirror of truth shone
in her direction.</div>
<div>
<br /></div>
Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com0tag:blogger.com,1999:blog-2147438406266555027.post-28705849320632131812018-11-01T22:31:00.001-07:002018-11-01T22:31:07.823-07:00Guest post for Autistics Speaking Day-Part 1<blockquote class="tr_bq">
<i>I'm a bit late to post these today, but they're important. I did not write them, as they clearly state. My friend Shaun did. They've been dealing with massive shit as a result of activisming while autistic and now you all get to read about it. If you are a person named here who behaved badly, well, if you wanted people to write warmly of you then you should have behaved accordingly. Content notes for sexual abuse, ableism, racism, antisemitism, a whole wide varieties of behaving badly.</i></blockquote>
<br />
My name is Shaun Bickley, I'm an Autistic disability justice activist in
Seattle. One of the vehicles I've used to do my work here is the
Seattle Disability Commission, a body of volunteers appointed largely by
the Mayor and City Council to advise the city on disability issues. In
my time on the Commission but especially the last 14 months I've been
subjected to ableist harassment, retaliation, and stalking because of my
advocacy.<br />
<div>
<br /></div>
<div>
Unfortunately we live in a society where
the law protects some people without restricting them, and restricts
others without protecting them. By and large I fall into the second
group, at least where these people are concerned. It's unlikely that my
situation will change, not unless I concede and retreat from public life
entirely (and I hope that doesn't happen).</div>
<div>
<br /></div>
<div>
But I can tell my story. And that will have to be enough.</div>
<div>
<br /></div>
<div>
Over
a year of incidents has given me new insight into how people are worn
down and simply quit after sustained systematic bullying. I will try and
summarize, but I will have to tell my story out of sequence.</div>
<div>
<br /></div>
<div>
I'll
start by explaining how ChrisTiana ObeySumner and I became the
Commission Co-Chairs. Our predecessors were Steve Lewis and Cindi Laws.
Laws was a <a href="https://www.seattlepi.com/local/article/Candidate-accused-of-anti-Jewish-talk-1181001.php" rel="nofollow" target="_blank">wildly unpopular anti-Semite</a> who
bullied Commissioners into giving her her way. One of the things I
remember most was her smug opposition to joining the LGBTQ Commission's
call for Mayor Ed Murray to resign last year (<a href="https://www.documentcloud.org/documents/3893750-CPS-Sexual-Abuse-Assessment.html" rel="nofollow" target="_blank">Oregon CPS found that he had sexually abused his foster son and should never be allowed to foster again</a>, something Murray didn't contest).</div>
<div>
<br /></div>
<div>
Steve
Lewis was a different matter. In December of 2017, Washington courts
were considered making it easier for a guardian to sterilize a person
under guardianship without their consent, something currently only
allowed by court order. Disability organizations rallied against it,
unsurprisingly.</div>
<div>
<br /></div>
<div>
What did surprise me was Co-Chair Steve Lewis' vehement <i>support</i> for
the procedure. So much so he went to the Seattle Women's Commission to
lecture them about reproductive rights, in an illuminating 6-page screed
that included comments like, "<a href="https://docs.google.com/document/d/166Az6MiKmWzTu8Mv5ecxH7NsoO4iMSuNpD2nA2GYBTE" rel="nofollow" target="_blank">women with intellectual disabilities react inappropriately (sic) aggressively pursuing men.</a>"
When members of the Disability Commission objected, he doubled down,
refusing to even allow us a vote on opposition. Making his support for
eugenics clear, he told Commissioner Dorian Taylor that "if people with
developmental disabilities were dogs, (we) would be put down." Taylor,
like ObeySumner and myself, are developmentally disabled.</div>
<div>
<br /></div>
<div>
In response, members of the Commission's two active committees at the time, Public Safety and Housing <a href="https://docs.google.com/document/d/1NugHuP4h57DVR2L6FLYLrQUIaChtjvJeR0bphDMU0W0/edit?usp=sharing" rel="nofollow" target="_blank">penned a letter</a> to the Mayor's office and the Seattle Office of Civil Rights requesting the Co-Chairs' immediate removal.</div>
<div>
</div>
<div>
In
the end it probably wasn't any of that that was the final nail in the
coffin: Lewis used the n-word at a professional dinner, which was
reported to the city by none other than Kassiane Asasumasu (it's also
worth noting in private conversation with me Lewis mentioned visiting
the white supremacist website <a href="https://www.splcenter.org/fighting-hate/extremist-files/group/stormfront" rel="nofollow" target="_blank">Stormfront</a>).</div>
<div>
<br /></div>
<div>
The
city gave him every opportunity to reverse himself: he met with the
Mayor's office and corroborated his use of the slur, attempting to
justify himself. Finally, a month after the call for his removal, Mayor
Jenny Durkan's office removed him from his (Mayor-appointed) position in
February of 2018. Cindi Laws (also Mayor-appointed) quit a few days
before Lewis' impending removal. The following meeting, ChrisTiana
ObeySumner and I were voted Co-Chair. ObeySumner is the first person of
color ever to Co-Chair the Disability Commission; I was the first openly
autistic person (though ChrisTiana has since come out as autistic).</div>
<div>
<br /></div>
<div>
So now, without white supremacists and eugenicists leading the Commission, everything would be fine, right?</div>
<div>
<br /></div>
<div>
Well, not quite...</div>
Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com0tag:blogger.com,1999:blog-2147438406266555027.post-48817670390446093912018-06-01T22:09:00.000-07:002018-06-01T22:09:02.356-07:00So I Need to Talk About GymnasticsContent note: I am going to be addressing the abusive actions that were perpetrated upon US gymnasts over the past several decades. These include physical, emotional, and sexual abuse and a breach of trust. They also include using young girls as a means to an end (that is, medals). I'm not going to be graphic but this post does come in light of all of that, and that is something to be aware of as you read.<br />
<br />
Those who know me well, or sort of well, or at all, know that I was a gymnast. I was pretty good. I loved it. Gymnastics is what saved me, to be honest.<br />
<br />
Those who follow the news know that USA Gymnastics handed an endless stream of young women over to a sexual offender (Larry Nassar, who apparently has an autistic daughter and I doubt she is safe from him). Those who follow gymnastics know that criticizing Marta Karyoli is Just Not Done, although you cannot square up the allegation that she knows everything with that she didn't know (I personally think the Karyolis both knew from early on that they had a predator. But keeping a predator around is a great way to find which girls will keep your dirty secrets). Marta and Bela have a documented history of being emotionally and possibly physically abusive, stretching back into the 80s. But all that USA Gymnastics saw was medals.<br />
<br />
This is disgusting. USA Gymnastics has all sorts of things you supposedly swear to uphold if you are a judge or if you coach lower levels, but as soon as we're talking medals, the athletes are apparently disposable. Fuck that, I say.<br />
<br />
Fuck USA Gymnastics. Fuck the Karyolis. Fuck Nassar. I'm going to talk about <i>gymnastics. </i>And my experience is just one, but there's themes in the survivor's narratives that echo my own experience.<br />
<br />
Namely this: the sport is not the problem.<br />
<br />
Many many children and adolescents (and late blooming adults) will tell you about the benefits they experienced. I made friends with my body. I learned to fly--gymnastics is all about learning to fly, right? Learning to make your body and your brain cooperate because what you are trying to do sounds like a terrible idea, and then doing it anyway. Gymnastics builds confidence, because you spend a lot of time saying "this thing should be impossible. I'm going to do it anyway". And then you do it.<br />
<br />
Gymnasts are both strong and flexible. The physical benefits for those who can participate are obvious. You use speed, you use strength, you use a range of motion--and you use those all together. Right? And if you are being taught properly, you learn everything in a stepwise fashion. Everyone is going to have a cap of what the hardest thing they can learn to do is, that's just life and having a body. But before you find that cap, you learn a lot of other things. You stretch your library of movement every day that you're in the gym. It's no wonder that gymnasts go on to succeed in martial arts or dance or other sports. We learn how to move our bodies in so many ways that adding elements isn't as daunting as making friends with your body and also working with a partner or a ball.<br />
<br />
Gymnasts who are not dealing with abusive coaches and program staff learn a lot of psychological things too. The psychological things I learned from gymnastics are why I am still here, and gymnasts with supportive families will report similar things. You learn to say "no, you move" to mental blocks. Even when that mental block is your asshole mom. You learn hard work. You learn creative problem solving (everyone else does a full but I hate back twisting? Good thing a front flip with a half twist exists!). Hard work beats talent because hard work shows up. And you learn that moving your body is fun. That's mental too. You learn to trust yourself. All of that is incredibly important.<br />
<br />
It also makes what USA Gymnastics supported a betrayal. I'm not minimizing at all what our athletes went through at the hands of the governing body. But those women and I agree, at least according to everything I have read: gymnastics isn't the problem. The people at the top are.<br />
<br />
I understand people who are saying that they'd never put their kids in gymnastics in light of all this. I do. But I don't agree with that as a blanket choice. I'd stay the hell away from elite gymnastics, yes, unless the whole system is changed drastically. I'd stay away from any program that belittled children or used weight and diet talk (I cringe so hard when commentators talk about the athletes' bodies, please shut up Tim Dagget), and I'd stay away from a program that never allowed observation--parents do not belong on the floor. Parents should be able to tell if their presence is a distraction to their kids and excuse themselves during practice. I don't like totally shut off gyms at this point. But there's seeing red flags and avoiding them, and there's cutting off a whole avenue for development. I understand the impulse. I don't think it's the solution.<br />
<br />
As people who care about the sport and its athletes, coaches and judges have got to be less afraid of making waves. Young girls learn early that people don't listen to them. People do listen to adults. It is our duty to speak up when we see practices that make us feel icky, or see dynamics that could be harmful. Many elite coaches done fucked up on this score--I cannot believe that literally zero adults knew what was happening at the Ranch and such. I cannot believe that people who have the eye for detail necessary to teach such intricate skills and routines could fail spectacularly to miss what a fucking creeper Nassar is, or that the athletes were underfed at the Ranch, or that verbal abuse is a bad life choice and totally happens. You're more perceptive than that, folks. I do in fact hold the elite gymnastics establishment as a whole responsible for the shit that was allowed to happen. I thought I could never be an elite coach because I'm not tough enough. I was sort of wrong. I can never be an elite coach because I care about the athletes, not about the medals, and will always, always advocate for the person. Every time. All coaches should do that. US elite coaches failed spectacularly at that.<br />
<br />
The system is broken. The sport can be sound. Listen to participants. We don't have to throw away a great way to make friends with your body because of a broken system. We need to throw away the system.Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com0tag:blogger.com,1999:blog-2147438406266555027.post-46275153883187105332018-05-12T21:58:00.000-07:002018-05-12T21:58:14.134-07:00Actually, I don't regret it: Mother's day without a motherIt's Mother's Day again. That day that your friends with good parents forget, again, that their experiences aren't the only ones and say shitty but well meaning things to you, asking about what you're doing for your mom. Because of course that's a healthy safe option for everyone, <i>their</i> mom is great.<br />
<br />
These well meaning friends, when you say "nothing" or "Netflix with my cats" or "hiking alone where I won't have to put up with brunch traffic" will often ask confused. They may express bafflement that you aren't doing something for your mom.<br />
<br />
Many many people, even well meaning, empathetic people, cannot understand what it takes to cut off a parent. Even if they know why, even if they agree that your parent is toxic, they can't grok why that means "I don't do mom-centric holidays". It's like there is a disconnect because that diverts from their experience of the world.<br />
<br />
And then they may say the thing that is borderline unforgiveable: "she's your <i>mom</i>. You'll regret this when she's dead."<br />
<br />
So, those of you who are well meaning people with good parents: <i>never say that.</i><br />
<br />
But this post isn't for you. Maybe later I'll write a post on how to not be shitty to your friends who disconnected from their parents.<br />
<i> </i><br />
<i>This post is for you, the brave person who got free.</i><br />
<br />
I'm so proud of you. You had an opening. You did what was right for your safety. You did it in spite of growing up inundated with "but family" messages. You left.<br />
<i> </i><br />
Maybe you took a long time to get free. Maybe you did the reconciliation/estrangement spiral before reaching escape velocity. Maybe you will have a reconciliation that sticks, on your own terms. Maybe you won't. It's okay if you don't.<br />
<br />
Really. You don't need to tolerate someone just because they're family. And you don't have to reunite. Ever. If that's what you want, I wish you the best of luck, but it's not a requirement.<br />
<br />
Everyone knows someone who knows someone whose third cousin's brother's tutor's veterinarian regretted removing a toxic mom from their life. This is the dominant narrative. There's so few narratives about people who don't. It makes people uncomfortable.<br />
<br />
Allow me to use my superpower of "making people uncomfortable" for you: I got out, and I have never regretted it. Not even for a moment.<br />
<br />My mother died several years ago. Recently enough that I panic when I see someone who looks like her in public, long enough ago that if I was going to have regrets they'd have set in. I don't regret it at all. I don't regret missing her birthdays, I don't regret missing mother's days, I don't regret skipping her funeral. I don't regret the years of gaslighting, nastiness, and unpredictability that I escaped. Getting out was hard. Staying out had some really rough, touch and go moments. But I have <i>never</i> regretted it.<br />
<br />
Now, I have had moments of mourning for the mother I didn't have. All the stories people have of their good times with their moms, the supportive things apparently a parent does? I have gotten wistful. But that wasn't my mother. That was never going to be my mother. She isn't the mom she needed to be to be worth continuing a relationship with. The mom who had my back stopped existing when I was still very small. I can be sad about the alternate universe where things were different, without ever regretting leaving.<br />
<br />
Maybe you're wistful like that too. Maybe you had good times so feel like it's not "bad enough" to justify skipping mother's day. But you know the society you live in and you chose to not put yourself through that. It was bad enough. You don't have to put up with abuse of any kind for the comfort of others. You've already done the math. You chose the path that people don't understand because you needed to.<br />
<br />
If you, like me, are going to be struggling with the thoughtless "all moms are great no matter what", be gentle with yourself. Do something nice for yourself. Lots of us basically parented ourselves, after all, or we're basically going back through & doing as adults what our parents should have done for us as children. Celebrate getting out.<br />
<br />
And don't let anyone tell you that we all regret leaving. We don't. The hard part about today has <i>nothing</i> to do with regretting escaping. It has everything to do with people who supposedly care about me trying to make me do so. I'm pretty sure I'm not alone in this--how many of those regrets were expressed to shut up people who say "but she's your <i>mom.</i>"?<br />
<br />
If you, like me, are spending today without your mom, I salute you. You took care of yourself in getting out. That's amazing. You're amazing. I wish society would reexamine its collective prejudices and see how much it takes to cut off a parent. Maybe if they did they'd not be twisting the knives that are already driven into people who can't be around their mothers.<br />
<br />
<3,<br />
KNeurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com3tag:blogger.com,1999:blog-2147438406266555027.post-31394291096511505692018-02-18T16:15:00.002-08:002018-02-18T16:19:31.650-08:00To the youth I know--you matter. I'm so sorry.<i>This is one of those posts I highly doubt the people I have in mind as I write will ever see it, or will know is for them. But it's not just the youth I know who fit these words. They're just who I am mentally looking at & speaking to, because Having Feelings at them would be awkward & weird & they have enough to worry about without realizing that I'm a big ball of squishy feelings. </i><br />
<i><br /></i>
Dear young people I have the privilege of knowing & working with & seeing grow into who you are going to be,<br />
<br />
I am so sorry. We failed you. We meaning the adults. Again and again we failed you. No, #notalladults, but yes, enough adults. You're putting up with a veritable avalanche of bullshit and it's not fair. And it's our responsibility. I'm so sorry that you're going to be the ones stuck with the fallout.<br />
<br />
I'm so sorry that your generation has targets on its backs, in the places that should be safe, because our lawmakers care more about guns than about you. I know the kind of people you are, and the kind of people you want to be. I fear for you every day. Every time I see reports of another mass shooting I am afraid that we're going to be holding a vigil for you, because you're brave kids and you're selfless kids (I lucked out, getting to know you. You're way further along the road to decency than the kids I went to school with were). I know that every week, someone is having to hold a funeral for someone very like you. And I can't even imagine your terror every day.<br />
<br />
I couldn't even get on the MAX for several months after the white supremacist murder. You have to go to school every day. You can't avoid it. I cannot imagine how scary that is, every day. And you're still brave. Every one of you who I know & spend substantial time with is.<br />
<br />
I'm so sorry that you grew up being called entitled and lazy. My generation got that too & it sucked. And your generation is being left in an even bigger sociological mess than mine was--that's saying something. Millennials (that's me, not you. You're Generation Z or Generation Screwed Over or Generation Why Aren't You More Nilhistic or something) are the first generation to have a lower life expectancy than our parents. You may be right there with us. That sucks. You deserve better.<br />
<br />
I'm sorry that the news is always, always bad. That you're seeing a rise of fascism. That you're watching while adults, who are supposed to care for you & show you the way, destroy the planet. That kids you've known from childhood are being sent to countries they don't remember, all because adults are letting their bigotries rule.<br />
<br />
I know your whole generation isn't perfect, but gods what I've seen of you makes me feel both hope and shame. We don't deserve the representatives I know. You're forces for good. I hope you keep being forces for good, although it's hard, especially as good gets dangerous.<br />
<br />
I'm so sorry. You're worth more. We should have fought harder for you. We owe it to you. Please, hold on to who you are. Who you are is beautiful. Don't succumb to the bigotry. Learn from our mistakes. My generation & the ones before chose to not. Be better than us. You have an abundance of information at your fingertips. Please. Learn from it.<br />
<br />
I'm proud of each of you. I am proud to know you, to get to watch you grow into adults. I wish you didn't have such a mess to come of age in. I plan to help clean it up. You deserve that & so much more.<br />
<br />
Love & strength,<br />
KNeurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com0tag:blogger.com,1999:blog-2147438406266555027.post-15066152792377415302018-02-10T20:04:00.003-08:002018-02-10T20:04:51.198-08:00Awareness (TM) has bad effects on typical kids tooI've spilled much digital ink, as have my peers, about how Awareness (TM) actually hurts autistic people, how we need acceptance not awareness, and all the things that go along with that. People don't really want to hear that. It's like how it effects us doesn't matter or something.<br />
<br />
Okay. Fine. So let me tell you who else it hurts: young typically developing children. No, really. And their families too.<br />
<br />
Here's the thing: autism awareness seeks to make everyone afraid of autism. It can strike at any time! Eat your baby! It lurks! Seeking to destroy you! (because that's totally how a neurology works right?). Awareness charities want everyone to be on high alert for autism and they want you to be scared of autism.<br />
<br />
Well boy howdy have they succeeded. Everyone is afraid of autism. Great. Wonderful. Well done. And everyone thinks they can spot an autistic person.<br />
<br />
But they can't. So you have all these families hypervigilantly watching their toddlers for signs of autism so they can intervene, because Awareness Inc told them they can intervene and turn an autistic child into a typical child.<br />
<br />
Things Awareness Inc has them worried about? Turns out most aspects of autism, particularly in young children, are in no way limited to or mostly found in autistic kids!<br />
<br />
Your two year old isn't talking in sentences? That is in fact normal. Your toddler screams, cries, and generally has no emotional regulation? Well yeah, they're very very young. That's normal too. A three year old who hates change and doesn't like to share? That's not out of the ordinary either. A whole lot of traits and behaviors that the Awareness (TM) lobby has you afraid of are just part of being tiny children.<br />
<br />
Autism isn't the reason a five year old won't go to an art gallery quietly. Being five is. <i>No</i> five year old is going to enjoy that, okay? Most preschoolers are not able to deal with fancy pants restaurants. They just aren't. It's okay. They're little!<br />
<br />
People are really under educated about child development and psychology in general. Over and over, parents and other adults make developmentally inappropriate demands on children, regardless of the kids' neurologies. Adults just, on the whole, are very bad at knowing what is and isn't typical for a child of a given age--what it is reasonable to expect of an average child of any given age group. People ascribe motivations that are far beyond little babies all the time (a 6 month old is developmentally unable to do something to spite you. Ever. They just are). They think kids have more executive functioning capacity than they do, more emotional regulation capacity than they do, and better ability to access their words in times of stress than they do. And this is when we're talking about neurotypical children!<br />
<br />
Then you add the urgency of Awareness (TM) on top of this. Now you have every adult who sees a kid having a hard time hypothesizing that the kid is either spoiled or autistic. That's a snap judgement on very little information and mighty hasty. Little kids of all neurologies have loud failures to deal. Kids do in fact have to learn to talk, and they do it later and slower than people seem to think.<br />
<br />
Not everything that baffles or inconveniences adults is either spite or a developmental disability. Sometimes it's developmentally right on time. Panicking that everything is a sign of autism isn't helping these families. It isn't helping typical kids whose parents panic and decide they must have autism--even if they avoid harmful interventions and quack treatments, that's still a lot of stress and a lot of microscope-examining (which is more stress) all around.<br />
<br />
Breathe. Calm down. Not everything autistic people do is something just autistic people do. You don't need to be Mad Eye Moody with his constant vigilance. It'll all be ok. Give your kids time to breathe, to develop, to learn how to do things like regulate their emotions and use their words. They need more time than you think they do.<br />
<br />
We need more awareness of how children develop in general, less panicking about neurodivergences in specific. Awareness(TM) without that background provides a lot of unnecessary worry and that's bad for everyone. Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com4tag:blogger.com,1999:blog-2147438406266555027.post-88687547681527227972018-01-26T14:39:00.003-08:002018-01-26T14:43:19.192-08:00To those I went to middle school withDear (heh) class of 1997 at a certain Catholic 4-8 school in central Illinois,<br />
<br />
This letter has been a long time coming. See, I have so many words to say to you and most of them are profanities. You're not worth the eloquence I use for most things, though, so here we go.<br />
<br />
We are old enough to have children in school. We are old enough to have children at that school. And that is horrifying. Not a single one of you should be allowed near children, ever. I know that statistically, many of you have your own kids or may work with kids. This is horrifying. There's no way who you are at 14 grew up into a decent enough person for that job--I knew most of you at 18, you were just as insufferable. You were <i>bad people</i>. Every one of you.<br />
<br />
"We weren't bad. We were just kids". Guess what? I was too! And because, unlike you, I've never been a perverse waste of carbon who takes joy in torturing other people, I work with kids. I know kids. I know kids the ages we were. They'd have thrown down. I'm not just talking about one of my kids I know, either. I have known multiple young people who'd have taken on bigger and badder folks than yourselves, in a larger number, because they can find "wrong" with two hands and a map. Youth isn't an excuse. Youth isn't a reason. You were cowards and you are bad people.<br />
<br />
Let me tell you something you should have known, given that supposedly we were all super smart and learning good solid morals or whatever: you were torturing, intentionally, a child who was being abused at home. So great job. A+. But you had to make sure, since you weren't the richest kid at school anymore, that you maintained your <i>status.</i> Oh, and while I have grown into a person who doesn't give a shit about test scores because they don't determine who you are as a human being, let it be known: 2 people in our whole grade got in on the merits of our tests rather than on the merits of our parents' wallets. I am one of them. That doesn't matter though; I'm a better person than you because I don't torture people who are being abused at home for funsies.<br />
<br />
<br />
I'm sure at least one of you would wring your hands and cry "but we didn't <i>know</i>" when you find out I'm autistic. Thing is, you shouldn't have to know. The way you treated me for five years, five hellish years, is unacceptable no matter what. If you had known it wouldn't have changed anything. Don't lie. You were bad people. The core of your being is cruel, cowardly pieces of shit. That's just facts.<br />
<br />
You were sure pleased with yourselves, huh? I bet. Are you pleased to have contributed to a rip-roaring case of Complex PTSD? Are you? Did you say "gosh I hope I star in someone's nightmares for the rest of their lives?" Oh wait. I know the answer to that question, since you told me to kill myself, daily. You wanted me to not have any more nightmares. Because you are cruel wastes of skin, every one of you.<br />
<br />
I sure hope none of you lies to your children and tells them that you care about bullying. You don't. You may care when it's your kid, because they are an extension of you (people as self centered and awful as you don't change that much--patterns exist, sorry I see them), but you don't actually <i>care</i>. You probably relate to the bully more than to your own child. Unless of course your child is neurodivergent, in which case do them a favor and call social services on yourself. You shouldn't be trusted with a dog, much less a neurodivergent child.<br />
<br />
The sad thing is? You all had every opportunity to not be literal human garbage. You had money. You wanted for nothing. Most of you had at least one significant talent. Your families may not have been perfect but they weren't horror shows. You could have chosen to not be like you were.<br />
<br />
But you didn't. All these choices were available to you, and you chose instead to be the worst of humanity. And you'll never experience any consequences for it, because all those options were available to you. Funny that.<br />
<br />
May who you were haunt your dreams. That's still who you are. May you live every day knowing that you deserve nothing good or warm in your life, and that's because you chose to be vile. It's your choices who tell who you are, more than your abilities, and of all the routes open to you, you <i>made a conscious effort</i> to be scum.<br />
<br />
I may have nightmares about you still, but at least I'm not a coward. At least I can look at myself in the mirror and say "I never tortured a person for fun". Sure, you literally fucked up my ability to meet goals, but that's on you. I'm worth 1000 of you.<br />
<br />
You fucking scum.Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com1tag:blogger.com,1999:blog-2147438406266555027.post-48918923938050808802017-12-28T23:52:00.001-08:002017-12-28T23:52:19.594-08:00"If my kid could do that I'd consider them cured". But would you though?I've been hearing this for years. People older than me have been hearing it for years. People younger than me have been hearing it for a while now. What is it?<br />
<br />
"If my child could do <thing>, I'd consider them cured," where <thing> is anything from arguing online to going to a protest to giving a presentation to writing a book to successfully running away from their parents' house in fear for their lives.<br />
<br />
If their child could do this one thing, they'd consider them cured. People with a whole wide variety of support needs hear this--I've seen it said to people with a job and a house and a drivers' license and to people who need one on one support to communicate. We're all cured, apparently, because we said fuck or because we said that society is broken, not us.<br />
<br />
Let's examine this though. I'm going to pretend I didn't notice this pattern, of who gets told this and what things are grounds for being kicked off autism island. We are going to walk through this as though it is a good faith statement, rather than a silencing tactic. Let's do this.<br />
<br />
<i>Cracks knuckles</i><br />
<br />
The way this part of the post is going to work is as follows:<br />
<br />
I will type up a thing I have been told indicates I am no longer autistic. I will immediately follow it with a disabling trait that, apparently, is mitigated by that thing which someone so helpfully told me means I am cured. Ready?<br />
<br />
<i>"If my child told me he didn't want a cure I'd consider him cured</i><br />
<br />
That's a real neat trick there. Also, the phone call to get my nightmare meds refilled that I've literally not been able to make just made itself. Thanks!<br />
<i> </i><br />
<i>"If you were still autistic you couldn't give presentations at conferences.</i><br />
<i><br /></i>
I note that you don't challenge the autism of people who say things you want to hear, and now thanks to your declaration, I can no longer hear the fluorescent lights. Wow that is so helpful you have no idea.<br />
<br /><i></i>
<i>"If my child was so sarcastic I'd assume he was cured."</i><br />
<br />
Holy shit now the ability to hold down a full time job just happened! Wow, your assumptions are fucking magical!<br />
<i> </i><br />
<i>"My son never tells me he thinks this therapy is abusive. If he did I'd know he was cured."</i><br />
<i><br /></i>
....<br />
You want to reconsider that one?<br />
No?<br />
You probably should.<br />
But. Okay. Looks like because I called abuse, abuse I can now, in fact, feel all my appendages without moving them, instead of sitting and just hoping they don't float away so some therapist doesn't grab them. Happy now?<br />
<br />
<i>"If my child vanished from my radar when I threatened to have him committed I'd consider her cured."</i><br />
<i><br /></i>
You know this is another one that's going to have my readers wondering what the hell kind of autism parents I run into, right?<br />
You're going to stick to this one too? Alright then.<br />
I have been cured of my inability to wear a whole wide array of clothing considered "appropriate for the office" because I vanished out of self preservation.<br />
<br />
<i>"No one autistic can go to protests! If my child did I'd consider them cured!"</i><br />
<br />
Hot damn, look at all that ability to notice chores need doing and actually do them in the same day I just developed, thanks to my hatred of injustice.<br />
<i> </i><br />
<i>"MyChild can't write ascerbic essays on the internet. If he had a blog I'd call that cured!"</i><br />
<br />
Aside from the obvious points that your child is eight and doesn't have an internet connection....my carpet, which hadn't been vacuumed since I moved in until your pronouncement, thanks you.<br />
<i> </i><br />
<i> "My child would be a recovery story if she was arguing with strangers on the internet."</i><br />
<br />
As an actual 'indistinguishable from peers' kid can you please not?<br />
That's too much to ask I see.<br />
Suddenly small talk is an activity that makes sense to me. Thank you for your expertise.<br />
<br />
<i>"If my child ever corrected me, I'd praise Jesus because it'd mean he was cured"</i><br />
<br />
I'll praise Jesus if your child feels safe to correct you. Sorry. That was rude. But apparently I have a sense of time after all, and my bills all get paid without endless alarms, so that's fancy.<br />
<br />
<i>"If my kid had interests like yours I'd consider them to be neurotypical."</i><br />
<br />
Umm I don't even know what to do with that. Am I not a white tech bro enough for you? I guess? Sorry I can do a cartwheel? And lo, I have never and will never again lose language, all because of said cartwheel?<i> </i><br />
<i></i><br />
<br />
<br /><i></i> <br />
<br />
All of these are actual things people have said to me or to people around me. I did not use other peoples' autistic traits though, I only used mine.<br />
<br />
So let's pretend these things were said in good faith (you can see why I have a hard time with this yes?). What do they have in common? Not much, except that someone is denying my neurology because of the challenge to their sense of their own authority.<br />
<br />
First, that's kind of a fucked up way to respond to someone not taking you as the authority in all situations. I mean, really fucked up. You'd not do that to someone you didn't consider fundamentally inferior. Don't try to lie to me, we've had the good faith portion of this conversation. That's not how people relate to equals who challenge them. They meet the challenge, not attack who the person is.<br />
<br />
Second, the things that mean I am not autistic in these peoples' eyes? Have literally nothing to do with autistic traits. Telling you that vaccines don't eat babies isn't magically curing my sleep (non)cycle. Knowing a non insubstantial number of impolite words isn't feeding me things that aren't chicken nuggets & Kraft dinner.<br />
<br />
Do you see what I'm saying?<br />
<br />
Is it really good for your kid to be judged on how well he kisses others' asses? Is that what you want? Do you want her disabilities to be ignored because she didn't make some random person on the internet feel comfortably superior to her? Do you want them to be denied support because their truth is uncomfortable, and they are able to speak it?<br />
<br />
Consider that before declaring anyone cured. <br />
<i><br /></i><br />
<i></i><br />
<i><br /></i><br />
<i> </i> Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com0tag:blogger.com,1999:blog-2147438406266555027.post-63311749608531045822017-12-05T21:17:00.000-08:002017-12-05T21:17:00.242-08:00Open letter to John Elder Robison, on his comments on To Siri With Love, among other things<blockquote class="tr_bq">
<i>apparently this is currently an open letters blog. Okay. Um. So. That's a thing.</i></blockquote>
<br />
So. John. Pull up a chair.<br />
<br />
This has been a long time coming, and while the proximate cause is your clueless comments on <i>To Siri With Love</i>, that's just a last straw.<br />
<br />
John, I know you think you're an expert in neurodiversity, because abled people tell you that you are. It feels good, right? Being accepted by the people who you have been told your whole life you should be like? So I can almost see the temptation to try to play reasonable with them, even when they're unreasonable.<br />
<br />
Here's the thing, John: when you suggest that maybe the autistic community should try to listen to parents, to see things their way, <i>you are giving away your newness</i>. That has been done. That ship sailed, over and over and over did it sail. We gave up on that before you even heard the word Aspergers. We tried it. It failed. We tried again. It still failed.<br />
<br />
So. John. Let me give you an analogy, because I sort of know how you feel. I know what it's like to be given standing and respect I didn't actually earn, to be assumed to be more skilled or in the know or whatever than I am. So here, let me try to empathize with you.<br />
<br />
I do a martial art where a lot of things are based on seniority--where you line up depends on your rank. If you and other people are the same rank, who got there first? If you got there the same time, who got to the previous rank first? Who started first, it ultimately goes back to, if it needs to. Both kid's and adult class work this way, but the ranks are mostly the same--youth has a couple more, but kids melt into adult class seamlessly at whatever their rank is when they hit the magic birthday.<br />
<br />Bear with me here, John.<br />
<br />
So. I'm mid ranked, I guess, good enough to be impressive to the untrained eye but no expert. This time along I am working with a bunch of kids who also just came up, getting ready for a test. Technically all these kids are senior to me.<br />
<br />
Because I am an adult, and because I am comfortable teaching movement based things, people assume I am working 'with' these students. I am not! And it's really important, John, that I don't forget that. They are young. They give me back just as much as I give them. They know the protocols better than I do, even if I am more comfortable with some of the movements. If we need to puzzle something out, they are right there with "maybe it's like this?". If one student has a ridiculous, wrong idea that seems like it should make a technique works, but it won't, someone (or several someones) are there to say "that sounds like a good idea. It doesn't work. We can try it, but this is what happens".<br />
<br />
It's vitally important that I remember, John, that these kids are my equals in the community, but also that within the community, if we are needing to split hairs, they're my seniors. They know things I don't. They've got years of experiences with the art that I just don't have. I have experiences in other things, and they transfer over sometimes. Sometimes they are drastically wrong for the objective we are trying to achieve.<br />
<br />
It feels good to be told that it's so nice that I'm working with the kids. I know how great you feel when people treat you like an authority on neurodiversity. But there are a lot of people whose experiences you are ignoring, you are refusing to learn from, because the ego of "I'm an expert! I got thank yous and a shiny fellowship and everything!" gets in the way of allowing oneself to learn.<br />
<br />
We get people now and then, John, who cannot deal with the fact that children outrank them. Hell, we get people who can't deal with the fact that I outrank them and I'm a very young looking mid-30s. This doesn't go well. They don't learn things. They embarrass themselves. If they represent our club at workshops and such it can embarrass the whole community, because they're fundamentally not understanding what we are about. And this not understanding, largely born of ego and wanting to be respected more than they want to learn, keeps the entire group back.<br />
<br />
John, you aren't doing us any favors when you suggest that we need to entertain notions of throwing kids off bridges or involuntary sterilization or any of that. It's not actually reasonable. You're not representing the neurodiversity movement. You are vastly misunderstanding it for your own short term gratification. You aren't doing our next generation any good. You're hurting us all, John, and from here it looks exactly like it's for short term ego boosting 'respect' to the detriment of all of us.<br />
<br />
You want to represent us? Then represent us. But you have to start by looking at who came before you and what has been done after you, not just what will make your life easier.<br />
<br />Regards,<br />
Neurodivergent KNeurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com37tag:blogger.com,1999:blog-2147438406266555027.post-58499137641869306652017-12-02T19:02:00.001-08:002017-12-02T19:02:30.782-08:00Open letter to the Democratic Party Re: Your Fundraising Emails.Dear National and Local Arms of the Democratic Party,<br />
<br />
Like many Americans, I get a lot of emails. Like many Americans who care about things, I get a lot of emails asking me for money. Like a lot of Americans, I get a lot of emails explicitly from you demanding my money and my action.<br />
<br />Democratic party, here's the thing: you send me emails that say "Don't let the GOP <do awful thing>" pretty much on a daily basis. And I am not the one letting the GOP do anything.<br />
<br />That's on you, friendos.<br />
<br />
Even before the Democratic party establishment latched onto "they go low, we go high" as a failing-to-rally cry, the strategy of caving to Republican plans was very much in place. Democratic party, even if I had money--which I don't--I wouldn't give it for you for the purpose of fighting my battles. You won't fight them.<br />
<br />
In my lifetime there's not a single battle I've seen the party truly fight, you see. The Overton Window keeps getting pulled right because the Democrats propose something, Republicans say "ha ha no" and you say "oh ok let's compromise."<br />
<br />
Your compromises, Democratic party, are what have led us to a place where people with disabilities, who were already in deep poverty, are now likely to lose our healthcare and our freedoms. You let this happen. Your compromises, Democratic party, are why most of my generation is drowning in student debt and will likely never resurface. Your compromises are why education and health care disparities are so rampant. Your compromises are a big factor in having so many wars that we shouldn't have had, and in our returning veterans being abandoned when they get home. Your compromises contribute to voter suppression, which especially effects people of color.<br />
<br />
You make choices, Democratic party, that screw over your base, again and again and again. You make compromises that will ruin, if not end, our lives, in this "appeal to the middle" fallacy. You aren't going to woo any Republicans, Democrats. You aren't. You know that; if you didn't you'd be asking them for money. You try to get blood from a turnip (that turnip being your base) after you already sold us out, and for what? So you can say you compromised? That you were a bigger person?<br />
<br />
Time to stop being the bigger person, Democratic party. Time to do your damn job and look out for your constituents. "At least we aren't <i>those</i> guys" actually isn't good enough.<br />
<br />
And you're going to have to do it without our money. You already took every dime and wasted it doing your best impression of a doormat.<br />
<br />
Regards,<br />
K<br />
Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com0tag:blogger.com,1999:blog-2147438406266555027.post-7476069916606077562017-10-22T21:14:00.002-07:002017-10-22T22:37:27.155-07:00The Betrayal of Divergent: an open letter to Veronica Roth<blockquote class="tr_bq">
Alyssa over at <a href="http://yesthattoo.blogspot.com/" target="_blank">Yes That Too</a> has written and is writing a fair bit on the topic of how <i>Divergent</i> could have been empowering for our community and instead it was a betrayal. A presentation I did brought it back up to the top of my mind, so here is my contribution to the Disability Discussion on <i>Divergent.</i></blockquote>
<br />
Dear Ms Roth,<br />
<br />
It has taken me years to write this to you & now I'm doing it almost on impulse all in one sitting. There's things you're probably tired of hearing that I couldn't figure out how to avoid doing, so I'm not going to avoid doing them. Instead, I am going to speak sincerely, from my heart, about the impact your work had on me and the impact it could have had.<br />
<br />
The first thing I couldn't figure out how to do, Ms Roth, is how to not compare <i>Divergent</i> to <i>Hunger Games.</i> I'm tired of hearing people fabricate similarities beyond the obvious (both driven by strong teenage girl protagonists?) so I can't imagine how tired you are of it. But I can't, because part of explaining what <i>Divergent</i> could have been for me is by comparing it to what <i>Hunger Games</i> was.<br />
<br />
If we are being brutally honest, I'm mostly a Katniss. Katniss in the books looks like me. Uncannily like me. We have similar physical abilities. We figured out how to survive because we had to. We are both, if I may flatter myself, accidental revolutionaries and unintentional symbols rather than people to an unfortunately large number of people. I'm not overthrowing any governments, but I do find myself saying "who are all these people and why are they behind me?" more than once a decade. And I'm introverted, socially awkward, and good with a bow.<br />
<br />
But Tris isn't not relateable, nor, if I am being honest, is Four. Like Tris I have multiple aptitudes (and Amity isn't one of them). Like Tris I'm an adrenaline junkie. Like Tris I'm bravest when it's for someone else. And like Four it's not so much that I'm naturally brave as that the monster under the bed lived in my home and controlled me until I could get away. (Incidentally, touching on abusive parents who are well regarded by the community was incredibly important for me. Everything shies away from that. You confronted it. That mattered to me.)<br />
<br />
The Dauntless manifesto didn't just speak to me, Ms Roth. It sang to my soul. The saint I was named for said "I hate silence when it is a time for speaking," and the Dauntless manifesto took that and spread it out like a secular profession of faith. I believe that the cowardice of good people is what lets injustice prevail. I believe that it is my duty to shout when the person next to me can only shake. I believe to the core of my being in ordinary acts of bravery, in action, in walking what you talk. I believe that silence is assent and that it is better to die on your feet than live on your knees.<br />
<br />
I thought I was going to be getting lines tattooed on my body, because the words you wrote are my moral core made poetry.<br />
<br />
At least that's what I thought until the end of the second book.<br />
<br />
Let's go back to the title a moment. <i>Divergent</i>. To differ from what is expected. I've been using Neurodivergent as a self identifier since I was Tris's age. That's a long time. I am Autistic. I am epileptic. I have C-PTSD (Four and I have that in common). And when you are neurodivergent, you learn to hide--just like in the world you built, the Divergent must hide.<br />
<br />
But then we got to the end of the second book.<br />
<br />
I can't put this nicely, Ms Roth: you used a word that my community is quite attached to and used it to sell us eugenics.<br />
<br />
That's right, I said it. But so did you, though not in those words.<br />
<br />
In the world you created, I wouldn't exist. I have genetic conditions that certainly would have been engineered away before personality traits that people don't like (as a biologist, I can tell you that would be impossible anyway, but I'm not here to lecture your science. I'm here to express betrayal that you started off so well and then gave me eugenics).<br />
<br />
In the world we live in right this minute, Ms Roth, Nazis are on the rise. Eugenics never went away in the US. I know you aren't aware of disability issues at all, but forcible sterilization still happens to disabled people every day. People are given worst case scenarios about pregnancies that might have a disability, to encourage people who otherwise want that child to try for one that isn't defective. There's places where it is illegal for disabled people to have sex. People murder their disabled children with near impunity. People deprive disabled people of sex ed and of opportunity to develop romantic relationships if they so choose. The barriers to parenting while disabled are enormous. People make sure you know that a child like you is the least responsible thing you could possibly create.<br />
<br />
Nazis are literally marching in the street. I am not being hyperbolic; they are carrying swastikas.<br />
<br />
And you handed us a pretty blonde girl who is the pinnacle of perfect genes, hidden in a wholesomely gritty young adult post apocalyptic speculative fiction trilogy. That's some really unfortunate implications.<br />
<br />
The betrayal, Ms Roth, the betrayal. It cuts. This isn't a simulation. This is real. And the reality is that your popular series undermines my right to exist. That's wrong. I matter.<br />
<br />
I believe in bold deeds. I believe in bold words. And I believe that ignoring the eugenics propoganda buried in a popular story for my comfort is an ugly, cowardly lie.<br />
<br />
Regards,<br />
<br />
Neurodivergent K.<br />
<br />
<br />Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com0tag:blogger.com,1999:blog-2147438406266555027.post-58576705194100204512017-10-15T15:17:00.001-07:002017-10-15T15:22:54.783-07:00Lies We Need to Stop Telling Our Kids.There's another post I was supposed to be writing, but things happened and I ended up writing this one instead. Oops. The general ideas of this one have been percolating for a while; a conversation with Chavisory of <a href="https://chavisory.wordpress.com/" target="_blank">Chavisory's Notebook</a> helped me finally crystallize it into words instead of free floating irritation at the state of things.<br />
<br />
There are a couple lies we tell autistic kids. Kids with disabilities in general. All kids, to an extent. One of them seems to be aimed more at kids who we presume are girls, whereas the other one we hold onto a lot longer with disabled people than with abled people. And we have to stop.<br />
<br />
First things first.<br />
<br />
Folks, we have got to stop telling girls, women, disabled people, marginalized people that if they follow the right script they will be safe. I saw a white autistic man at a conference I just went to flogging his solution to police violence. Buddy my dude, the Latina obviously neurodivergent little girl you are talking to is not going to be safe from the police if she does what you say. That's not how this works.<br />
<br />
So many 'social skills programs' seek to be the cheat codes to a safe life. If you do what this guy says, you won't get shot by the police (not necessarily true). If you use exactly the right words, no one will bully you. This set of words is protective against medical mistreatment. That set of words will protect you from racial aggressions. If you do this little dance just right, you are safe from racism.<br />
<br />
I mean, hell, look at peoples' responses to survivors of sexual violence. The first thing they do is ask "well what did they do to deserve it? Did they give the perpetrator the wrong idea?". That's the first response, regardless of disability of the victim. As a society we have bought into this bullshit idea that if you perform The Safety Dance correctly, if you do all the right things, say all the right things, you're safe. You're safe from bigots. You're safe from predators. You're safe from people running the stop sign.<br />
<br />
And that's a lie we have got to stop telling people.<br />
<br />
And then there's the second lie, which ties into the first in that it prevents people from responding when casting the circle of protection doesn't work.<br />
<br />
Stop telling your children and your clients that 'appropriate' is a steady state. Appropriateness is situational. There are very few things you can do that are always appropriate or always inappropriate.<br />
<br />
"I don't like that" and "that is inappropriate" are different things, okay? But the people who are tasked with teaching us to navigate the world don't want to deal with situationals. Rather than say "that's annoying" or "I don't like that" or "sometimes that's ok but sometimes it is not" they tell us it's inappropriate.<br />
<br />
Hilariously enough, oftentimes the cry of "inappropriate" is used once the abled person in the situation has failed to convey that something is actually inappropriate. An example that you're all sick of but I am going to keep using until people stop making it so available:<br />
<br />
A neurodivergent man traps neurodivergent, and sometimes abled, women and people he thinks are women. He wants a girlfriend. For some reason no one has told him that you can't just corner people and try to touch them and whine at them until they agree to be your girlfriend (this is always inappropriate. There is no people or species that courts like this). People have told him nicely to cut the shit, and have been told it's inappropriate to use that language. People have screamed tonelessly to make him go away, and been told it's inappropriate. Someone finally knees him in the fork, and is castigated for how inappropriate that is too.<br />
<br />
There's only 2 people being inappropriate in this story: the man who thinks he can whine someone who said no into dating him, and the almost certainly neurotypical person who is lecturing people on doing what it takes to extract themselves. There are, in fact, situations where kneeing someone in the fork is the most appropriate way to go.<br />
<br />
Even in less extreme (though this isn't extreme; find a disabled woman or person read as a woman who has been to disability events and they have stories just like this) circumstance, marginalized people are taught from day 1 that resisting awful things is 'inappropriate'. Racialized children, queer children, disabled children, on and on and on. Defending ourselves is 'inappropriate'. What's actually inappropriate in these situations is how the people who wave that stamp around don't even care until they take matters into their own hands.<br />
<br />
Words mean things. Inappropriate isn't a blanket category for a thing. Yelling is always loud. It is not always inappropriate.<br />
<br />
Say what you mean.<br />
<br />
Stop lying to people to get out of uncomfortable situations for yourself.Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com4tag:blogger.com,1999:blog-2147438406266555027.post-30400052781417922172017-08-27T19:39:00.002-07:002017-08-27T19:39:20.877-07:00"No one will be here for my child when I die"...well why is that?<blockquote class="tr_bq">
<i>If you want to lecture me on notallparents this is not the time or place. Yes, every parent who was sending my friend unsolicited PMs that were really vile. Yes, every parent who knew about that but elected to yell at autistic people instead. Yes, every parent who is friends with parents who behave these ways. Yes, every parent who buys into these ideas. If you feel attacked that's a you problem, for you to solve. Taking out your bad feels on me proves my point better than any words I can use do. So don't live down to expectations, just this once.</i></blockquote>
<br />
We're going to talk about a justification parents give today for basically every awful and questionable thing they do to their child, and to those around their child:<br />
<br />
"No one will be here for my child when I die."<br />
<br />
That is not an unfounded fear. You're probably right. No one will. Or very few people will.<br />
<br />
Now you're going to get uncomfortable folks. We're going to talk about why that is. Spoiler: it's largely your fault. You engage every day in actions and attitudes and behaviors that are going to fuck over your child years down the line.<br />
<br />
Let's start with the ButtServices!!! argument. Y'all say and do all sorts of things, many of them cruel, and blame your lack of services. You fight for services "for families". Ultimately, the fight is constantly for services that benefit the parent, that make their lives easier. Don't look at me like that. You're the ones saying that <i>you</i> don't get services or that <i>families</i> need more services. You are the ones centering yourselves in the fight for services.<br />
<br />
So what that means is? Your child turns 18 or 21 and no longer has services! Because they were all about you! This whole time they were all about you! Adults are well and truly fucked in the developmental disability system because everything is geared at making the lives of the Real People around us easier. Disabled adults don't get much at all. Too much is parent centered. There are agencies that allegedly provide services through the lifespan that will only interface with parents. It's true!<br />
<br />
So that's a thing to be proud of I guess. You've built a self fulfilling prophecy where services are concerned. Your child won't be able to access them without you, you're absolutely right, because that's how you & your cohort want it. That's how you fight for it. You don't get to tell me that's not what you want until you start fighting for disabled people, not "families touched by disability", to get services.<br />
<br />
I'm not holding my breath on that one. I can't get most of you to understand that we grow up.<br />
<br />
(A moment here for a shoutout for those of you who sincerely told me that we're all someone's child with autism & our parents always fight for us. And by shoutout I mean 'fuck you'. My parents <i>never</i> fought for me. They fought with me. Physically. To injury. So fuck you again!)<br />
<br />
Then there's how you take the responsibility of modeling how people should interact with your child when they are an adult. People who aren't autistic and don't have autistic family members (and can't conceive of having autistic friends) are looking at you, yes you, for how to treat your child when they grow up.<br />
<br />
They're looking at how you treat us, adults who are currently autistic.<br />
<br />
Think real hard about how you treat autistic adults. Really hard. I've gotten death threats from parents. This isn't uncommon. Many of us get missives telling us explicitly to kill ourselves, again from parents. When we tell you about this, you go on to lecture us about 'judging you' (I'm getting back to this in a few paragraphs) and ignore that your cohort, yes yours, they are in fact your responsibility, treat us this way.<br />
<br />
Y'all can claim to love your kid all day long but if this is how you want them to be treated, I question that claim. If this is not how you want them to be treated, why the blazing <i>fuck</i> do you treat us that way?<br />
<br />
Out of one corner of the mouth "How dare you distrust me because of what your parents are like" and out of the other "here, let's see if I can break you in ways your parents didn't get to before you left". That's y'all.<br />
<br />
Precious few neurotypical people are going to be there for your kid because not only did you center yourself in services, but also you demonstrated that you want Real People (TM) to treat your child like utter shit. "Do as I say not as I do" isn't a solid teaching strategy and you don't even bother to pretend you don't want us constantly abused by you and yours.<br />
<br />
Then there's us. Autistic people. Autistic people provide most of the day to day support for other Autistic people, since as already discussed no one else does it. Services are for parents, and our parents make it very clear that we can be scraped off the bottom of your shoe and discarded.<br />
<br />
We try to talk to you. You see, we're largely pretty fucked up. We don't have to be fucked up. But we are, between the compliance training and the bullying and the decades of misunderstanding. We want better for your children, & we see you making the same errors. Maybe you aren't making an error on purpose?<br />
<br />
"HOW DARE YOU JUDGE ME"<br />
<br />
Ok maybe you are making that error on purpose. See, that's a very you-centered perspective to take. (I have another post percolating on judging, since the high horse of nonjudgement has led to y'all being complacent in multiple murders, but since autism is all about you it's clear that isn't your priority).<br />
<br />
We try to help you. We try and try. You send us missives encouraging us to kill ourselves. You threaten me in truly creative ways. Imagine if you spent half that creative energy on figuring out how to not treat people like shit! But I digress.<br />
<br />
We try and try, but we are not impervious to your abuse. We want nothing to do with you. Our circles don't overlap. You scare off, beat off, torment off every autistic person and autistic friendly person in your orbit, until when you die your child is surrounded by people who hate them.<br />
<br />You're right! No one will be there for your child! You've isolated them from their subculture, you've taught every neurotypical to treat them like shit because that's what autistic adults are <i>for, </i>and you've made sure all services are accessible only by you, not by your child.<br />
<br />
So you're not wrong in the words but you are wrong in every thing that matters. Only you can fix this, you've made very certain no one gives a shit what autistic adults say.<br />
<br />
But that would involve decentering yourself, & you'd probably rather whine about your child's future than actually allow them to have one.<br />
<br />
Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com4tag:blogger.com,1999:blog-2147438406266555027.post-66850907638327390782017-08-12T20:09:00.005-07:002017-08-12T20:09:57.278-07:00Where's your compassion for us? Folks, do not do this:<br />
<br />
If an autistic adult, in autistic space, says that something happened that was painful, don't diminish that. To take an example completely at random, say that I, on a friends only facebook post, from an airplane, say "I recognize children have a right to fly but the one behind me is kicking and screaming RIP me", there is literally no need to say "but what if that child has autism?"<br />
<br />
What about what if that child has autism? Does that mean I no longer have Ehlers-Danlos and my back won't be fucked up for days? Does that mean I am no longer sound sensitive? Does that mean lack of sleep no longer triggers seizures? Because autistic children exist?<br />
<br />
Every autistic adult you encounter knows damn well that autistic children exist. We are, generally, in the habit of compassion for children having a hard time in public.<br />
<br />The thing is though? "That kid causing you pain may have theoretically been neurodivergent so shut your hole about the very definite, documented pain and harm done to you"? That's not serving anyone. You're saying that only autistic toddlers have needs. You're fucking over your own children, if you're a parent (it is usually parents who decide to cape for Schrodinger's Autistic). They won't be toddlers forever.<br />
<br />
We generally do have compassion for kids who are having a hard time. The thing is, you have none for us. If we cover our ears you all throw an utter fit. How dare we? We are not allowed to be in pain. If we melted down the way that the pain Precious BeighBee is putting us in makes likely? We'd get <i>shot</i>. That is a way for us to die, being autistic in public. But you can't muster an ounce of compassion for us, can you? Because how dare we remind you that autistic adults exist.<br />
<br />
Our pain is real. Our pain matters. Acknowledging it isn't going to hurt you or anyone else. Promoting this idea that only toddlers are autistic, and no one else has access needs or sensory pain or anything else? That is bigoted and it is unacceptable. Your children are going to suffer for it.<br />
<br />
But hey that child whose parents brought no toys on the plane, and who was using language patterns autistic toddlers tend to not use? You sure defended him against attacks that weren't even happening.<br />
<br />Your contempt for autistic adults is showing. Might wanna see to that. Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com0tag:blogger.com,1999:blog-2147438406266555027.post-64550648027258157692017-07-12T21:43:00.004-07:002017-07-12T21:43:51.384-07:00Parents wore out my good faith. You brought it on yourselves.People always concern troll me, assuming that I'm thinking the worst of parents and thus holding them at a distance, being curt, charging them for my time, refusing to engage at all, engaging in a tone they don't like.<br />
<br />
You know what? You're mostly right.<br />
<br />
Do you know why?<br />
<br />
It's because of what happens every time I try to engage with you people in good faith. When I try to be "nice" instead of just laying it all out there for you in words that come naturally to me. When I try to coddle your feelings a bit.<br />
<br />
It's never enough for you. Ever. You don't want our help. You want your ass kissed. Let me tell you some stories. Recent ones. We're not talking when I was a pigtailed teenager. We're talking things that have happened in my thirties.<br />
<br />
Scenario one:<br />
<br />
We're talking about the Disability Day of Mourning. Allistic mommy is upset that it's not in April "for Awareness". Allistic mommy also opines that maybe those parents are autistic and that's why they killed their kids.<br />
<br />That's a horrible thing to say. It's also false.<br />
<br />
I mention that I met one of those moms, long ago before she became a fucking murderer, and also I've met the surviving dads of 2 kids killed. The only autistics in the matter were the non murdering parents. In all cases in my small data set, the murdering parent was allistic.<br />
<br />
She decided to declare that I said that all allistic parents kill their children. I said NO such thing but she wanted to yell at me and misrepresent me and verbally abuse me, so I said what she wanted me to have said to justify that.<br />
<br />This woman holds a high position in a state autism society.<br />
<br />
She has yet to apologize.<br />
<br />
I engaged in good faith; she did not.<br />
<br />
Or let's talk about today.<br />
<br />
I gave a parent the benefit of the doubt. She was talking like no one in the conversation had any difficulties beyond being vaguely autistic. This is not true.<br />
<br />I told her to stop assuming she knew anything about people on the internet beyond that they can type and have internet access.<br />
<br />
She continued to do this, after a vaguely but not really productive bit of conversation. So, because I was trying this "good faith" thing, I said that I knew she didn't mean to come off like she's not going to listen to us because we aren't Like HerChild(TM) but that she is and that's a dangerous assumption in addition to being off putting.<br />
<br />
Holy hell. You'd think I asked her something really egregious, like to exfoliate her heels one cell at a time. No. I did not. I engaged in good faith and told her what she was conveying that she didn't mean to convey, just for her reference, and that her assumptions were wrong.<br />
<br />
Holy. Hell.<br />
<br />
She started with "you don't know me". No shit I don't but I know patterns. I thought you were trying to avoid this one.<br />
<br />
She was not. <br />
<br />
So now she's threatening to abuse her child and blog about it to spite us, she's laughing at causing people seizures and flashbacks, she's trying to gaslight multiple people, she's claiming sarcasm when she's called out on saying straight up abusive things, she came down with schrodingers autism <i>and</i> schrodinger's epilepsy.<br />
<br />
And while this one is doing more, to this second, and pushing more immediately, this is what happens every fucking time.<br />
<br />Every. Time.<br />
<br />
Yes, I <i>do</i> know you. The second you get all puffy and say that to me, I know exactly how this is going to go. Every time I engage anything like on your terms, this is how it goes.<br />
<br />
You try to hurt me. You hurt my friends. You threaten your kid because I didn't kiss your ass enough for your taste.<br />
<br />Every. Time.<br />
<br />
You won't pay for my time but you want your ass kissed, you want to be told that nothing you're doing is wrong, nothing you do could be wrong, you want to be told your special, and you want NT word patterns.<br />
<br />
And you don't get that? You respond with psychological violence. Every time. You're so transparent about thinking we're subhuman. We aren't people to you, we're resources to use and abuse as you see fit. You're not special; the vast majority of you are like this.<br />
<br />
So parents? You want my goodwill back? Fucking act like it. <br />
<br />
NB: complaining #notallparents in my comments isn't acting like it. It's a step away from "I'm going to abuse my kid because I don't like you". So don't fucking do it. Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com5tag:blogger.com,1999:blog-2147438406266555027.post-87007541663083294672017-06-24T20:43:00.001-07:002017-06-24T21:11:55.098-07:00FAQ: PFL Edition<blockquote class="tr_bq">
<blockquote class="tr_bq">
<blockquote class="tr_bq">
<i>Inspired by parents, professionals, and other abled people who think that they have a right to tell us how to refer to ourselves and then get snotty when told that's inappropriate. </i></blockquote>
</blockquote>
</blockquote>
<br />
<b>Q: May I humbly request you change to using person first language?</b><br />
<br />
<b> </b>A. No.<br />
<br />
<b>Q. I demand that you use person first language.</b><br />
<br />
A. No. What happened to humbly requesting?<b> </b> <br />
<br />
<b>Q. Let me tell you all about it! You must be unaware!</b><br />
<br />
A. You may not. I am quite aware.<br />
<br />
<b>Q. But it puts the person first! It's more respectful!</b><br />
<br />
A. It is not. I actively selected identity first language. Telling me how to talk about myself is disrespectful.<br />
<br />
<b> </b><br />
<b>Q. But I need it to remind myself that my child is a person.</b><br />
<b><br /></b>
A. Woah there. "I can't think of my kid as a person" is really very much your problem. Why would you think that would win me over? It makes me very worried for your child.<br />
<br />
<b>Q. Person first language is correct.</b><br />
<br />
A. No, it is not. Stop trying to tell me what to do.<br />
<br />
<b> </b><br />
<b>Q. There is no need to be so rude!</b><br />
<br />
A. Okay so you come into my space and demand I talk about myself in the way you want because otherwise you cannot remember I am a person and that isn't rude?!?<br />
<br />
<b> </b><br />
<b>Q. I'm trying to help you by pretending I think you're a person. This is why you don't have allies! </b><br />
<br />
A. You acknowledge not thinking I'm a person and come into my space to tell me how to talk about myself. You're no ally.<br />
<b> </b><br />
<br />
<b>Q. How will I learn anything if you don't use person first language?</b><br />
<br />
<b> </b>A. If you need to be reminded every other word that I'm a person, you're not quite up to the level of this blog. This is not a Disability Rights for Beginners blog.<br />
<br />
<b>Q. You're so rude!</b><br />
<br />
A. But telling me how to talk about myself is not rude. Ohkay.<br />
<br />
<b> </b><br />
<b>Q. You have poor social skills because you have autism.</b><br />
<br />
A. I am not the one struggling with social skills here in this situation. You should be embarrassed at your behavior. I'm getting second hand embarrassment for you.<br />
<b> </b><br />
<b>Q. So you'll be changing to person first language?</b><br />
<br />
A. Piss off and don't piss back on again.<b> </b>Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com1tag:blogger.com,1999:blog-2147438406266555027.post-12950337089183271772017-06-01T14:26:00.000-07:002017-06-01T14:26:24.077-07:00Dear PSU, it IS partly your fault: an open letterDear Mr Wiewel and the entire PSU board,<br />
<br />
I am sitting at home by my computer instead of attending class today, in light of the terror attack on the MAX on Friday. Sure, possibly Micah Fletcher is attending class, but I suspect he is braver than me, better than me, less likely to die from relatively mild injuries than me, and less likely to be targeted than me. So don't try to use another student against me. That's disrespectful to him.<br />
<br />
This letter is about you and the choices you have made, or failed to make, that are why attending class is currently not a thing I feel safe doing.<br />
<br />
It's funny, the emails you send the school, Wim. Out of one side of your mouth, you're declaring Portland State a sanctuary campus. Out of the other? You're saying we can't prevent Nazis from using our campus as a platform. They're entitled to air their views, you say.<br />
<br />
We've all heard their views, Wim. Their views are that a large proportion of the campus population doesn't deserve to live, much less be on campus. I'm certainly not supposed to be, between my gender and my disabilities and my race. Nor are many other students, those you allege to want on campus. But not enough to stand for them.<br />
<br />
Remember back before the election, Wim? Remember the students parading about shouting anti-Latinx slurs, anti Black slurs (you've never pretended to care about ableist slurs so I'm not getting into that, we call that Tuesday at PSU, but that's another letter), pretending to build a wall? They were harassing students. They were making students feel unsafe. But "they have a right to free speech".<br />
<br />
People have had knives and guns pulled on them on campus, Wim. By the same folks who were parading about. From folks who video and doxx people who attend PSUSU and other progressive groups' events. This is not free speech, Wim, this is threats. This is inciting violence, though one could argue it is already violence. We have a right to privacy. We have a right to not be harassed for our very existence.<br />
<br />
But you, members of the board, who refuse to have an open meeting where students can hear and see what's happening, you support these men in harrassing students. You won't stop them, you see, not even from threatening folks with weapons, because "freedom of speech". Freedom to brandish weapons on campus isn't in the first amendment, bro, but apparently you missed that.<br />
<br />
And now, Wim, people are dead. People are dead because this city has a Nazi problem that you allow to breed on campus. You won't find a marginalized student who hasn't been made to feel unsafe by Nazi symbology, slurs, posturing, or transparent threats, but you have to support the freedom of speech of the poor oppressed white men quoting Hitler.<br />
<br />
Now people are dead. The man who killed two and seriously injured a third was targeting teens of color, Wim. Three men stepped in, but what if they didn't? They'd still be alive. The girls would likely be dead.<br />
<br />
Do you know what the man said? He said he stabbed the men because criticizing him, telling him to stop, violated his freedom of speech. He said killing people for telling him "you won't do that here" was patriotism. He said killing them was his right because he wasn't allowed to spew whatever venom he wanted unchallenged.<br />
<br />
Does that feel uncomfortably like what you've been saying in your emails? It should, Wim. Because you're coddling men like the terrorist, you're saying that it's their right on campus to spew whatever hate they want, to back it up however they want. You're not drawing a line, Wim.<br />
<br />
You're going to have to take a stand. The powers that be at PSU are going to need to choose: is this Nazi territory, or is it going to be on the right side of history? Right now you chose the former, and now people are dead. You currently support an environment of white supremacist recruitment and action.<br />
<br />
Pick a side, Wim. And be honest about it. I can't be the only person afraid to go to school. If you want me and people more marginalized than me on campus, show us. Take a stand.<br />
<br />
K A<br />
class of 2018 Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com1tag:blogger.com,1999:blog-2147438406266555027.post-634340224639980982017-05-30T00:22:00.002-07:002017-05-30T00:22:32.552-07:00Dear Destinee, it's not your fault. An open letter after the Portland racist attacks<blockquote class="tr_bq">
<i>Context: this post is written after a white supremacist went after two teenage girls on public transit, for being people of color in public. Three men stood up and defended them; he murdered two of them. The girl who, at this point in time, has talked to the media, was blaming herself. It wasn't her fault.</i></blockquote>
<br />
Dear Destinee, and your friend,<br />
<br />
I'm so sorry that you both were targeted the way you were. I know it's probably not the first racist venom you have heard, and I'm sorry to say it's unlikely to be the last. This city has a big racism problem, as much as they try to deny it. You have never deserved to be the target of that vitriol. You will never deserve to be the target of that vitriol.<br />
<br />
The experience must have been harrowing. I cannot imagine sitting in your shoes that day, or the feelings you are having now.<br />
<br />
I saw on the news you blaming yourself, saying these men are dead because of you.<br />
<br />That is not true. Please believe me, that is not true.<br />
<br />
A cowardly man singled you and your friend out because, as teenage girls, you're an easy target. You weren't with someone who he didn't want to fight. He reckoned everyone on that train was as cowardly as him and would just let him harass and attack you.<br />
<br />
He reckoned wrong. Other people, of their own free will, knowing it was risky, said "you may not target these young women. We will not allow it." Everyone who has ever considered intervening knows it's risky. Part of why people so often keep their heads down is because standing up is scary.<br />
<br />
Those men did the right thing for you, Destinee. They chose to put themselves in harm's way. Based on everything I have read about them, they'd do it again. Every person interviewed has been saddened and not surprised at all, because they were men of principle and justice.<br />
<br />
It's not your fault. It's not. You bear no blame in this situation. You have every right to ride the MAX. To go from place to place in safety. You did nothing wrong. It's not your fault.<br />
<br />
You're innocent, both of you. I'm glad you're alive, that you made it to safety. I hope you are healing. <br />
<br />Please believe me, it's not your fault. It's his.<br />
<br />
Love,<br />
KNeurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com1tag:blogger.com,1999:blog-2147438406266555027.post-82547339953956805012017-05-04T13:17:00.003-07:002017-05-04T13:20:38.198-07:00I wrote to my Senator. #corpsesdontvote<blockquote class="tr_bq">
This is what I emailed my senator earlier today, because only the senate can keep the ACA. CN for medical disasters, fairly graphic descriptions.</blockquote>
You get the cranky version of this because your staff won't even
promise the most basic of ADA accommodations. Ironic given that I'm
writing to you about health care and one of the conditions that requires
said accommodations.<br />
<br />
Like many Americans, I have chronic health
conditions. Like many Americans, I need you and the whole democratic
party to grow a spine and stand for me. I vote democrat because the
other choices are unconscionable, but I am thoroughly unimpressed with
the pattern of roll over and play dead. I need you to not be a doormat.<br />
<br />
Here's some incentive: how I am going to die if the senate doesn't kill the republican death to poors bill.<br />
<br />
My first chronic, life threatening medical condition is adrenal
insufficiency. I do not make cortisol. Without cortisol, people's bodies
cannot respond to the stresses of every day life. I take a daily
corticosteroid pill and must inject myself with extra steroids if I am
sick or injured. Without cortisol, the body cannot restore normal
functions in times of stress. Have you taken a first aid class, Senator?
Recall what you were told about shock. The heart doesn't pump
effectively. Blood pressure crashes. Blood sugar crashes. Death can
result. I am going to die from going into shock from a stubbed toe if
you folks don't find some courage. It's scary. When your heart won't
move blood, everything is /scary/. It's not a good death.<br />
<br />
The
other option, of course, is for me to die of epilepsy related
complications. Because of a lack of health care in my youth, my epilepsy
got pretty hard to treat--the more seizures you have, the more likely
you are to have more seizures. They are harder to treat the longer they
are allowed to go on--this is called kindling. As a result, my
mostly-effective seizure meds are about $1000/month (if we lived in a
real country with universal health care they'd have been stopped much
sooner, but we don't. We live in the land of "the poor and disabled
should die horribly". Your part in maintaining that status quo is very
much noted).<br />
I have 2 options for how to die if epilepsy related
causes take me. The first is SUDEP, sudden unexpected death in epilepsy.
The way to prevent SUDEP is to control seizures. SUDEP is probably not
painful, but it's traumatic to the people who find the body, and it's a
dead person who won't vote for you. Dead people don't vote. It's a lot
of grieving people, all because the D doesn't stand for democrat, but
doormat.<br />
<br />
The other option is status epilepticus. You aren't going
to like reading this. Since it's my fate, not yours, I don't actually
care. Be brave. It'll be good practice for that spine growing thing.<br />
<br />
Status epilepticus is a seizure that does not stop.The most commonly
noticed status epilepticus is tonic clonic status, although partial
complex and absense status also exist (and lead to all sorts of problems
like subtle brain damage and getting hit by a goddamn car because
you're only 25% aware of the world around you). This is not good.<br />
<br />
Your body is not made for every muscle to be contracting at once for an
extended period of time. Neither is mine. The muscles start to break
down. This floods the body with waste. The brain fries itself. Like,
literally. It cannot deal with the fallout of the electrical activity.
It is not made for that. You can seize yourself into a persistent
vegetative state. If you are me, your seizures will dislocate joints.
Remember that adrenal insufficiency thing earlier? That is the sort of
injury that leads to adrenal crisis, as is everything else about status
epilepticus. Your heart gives out. Your kidneys can't cope. Your brain
stops being able to not seize.<br />
<br />
This is an awful way to die.<br />
<br />
If you do not stand up to Republicans, you are choosing for me to die this way. And my loved ones will not forget it.<br />
<br />
With health care, I am an involved member of my community. I
participate in martial arts and assist children in accessing the
activity as well (including children who, like me, need health care to
be able to interact meaningfully with all that life has to offer). I am
finishing a biology degree--I was going to be an ecologist until the
republicans decided to destroy ecology, and no one stood up and said
"nah bro you can't do that". I teach and judge gymnastics. Kids and cats
love me. It's mutual.<br />
<br />
Without health care I'm a corpse. And my blood will be on your hands.Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com1tag:blogger.com,1999:blog-2147438406266555027.post-6524997408662865762017-04-22T15:00:00.000-07:002017-04-22T15:03:49.989-07:00Anti-med sentiment almost killed me.<blockquote class="tr_bq">
<blockquote class="tr_bq">
<i>Before I start, DO remember that I believe solidly in cognitive liberty. Your brain, your choice. However, the pushing of inaccuracies and terrifying, largely inaccurate rhetoric, pushing of worst case scenarios as common and inevitable, stigma, and lumping in all sorts of things together</i> <i>all led to some very bad places. I support whatever you choose to do to your brain--what people discouraged me from doing with mine is the problem I am talking about here.</i></blockquote>
</blockquote>
<br />
CN: medical neglect, discussion of stigmas, DARE, abusive parenting practices.<br />
<br />
I was diagnosed with epilepsy when I was pretty young, 2nd grade maybe? My seizures weren't dramatically seizurelike. They were not common. I didn't know I had epilepsy. I didn't know I was taking anticonvulsants until years later, because lying to me was a hobby of my mom's I swear.<br />
<br />
And then I took DARE at school, like we all did. And I became concerned about my mother's smoking and her drinking--which, to be fair, were at concerning levels (not feeding your kids because you need cigarettes? That's a problem. I'm ok standing in judgement on that, as the child who went to private school while simultaneously living on a starvation diet). Internalizing "drugs are bad" wasn't hard because in my life, the ones I knew about <i>very much were</i>. Mom fell off the toilet that she fell asleep on because she was drunk, don't wake her up unless you want to get hit. We're down to frozen pot pies because buying cigarettes was more important.<br />
<br />
Rather than adding nuance to the discussion, my mom decided the appropriate response was to yank me off the AED I'd been taking. At this time in my life, my seizures were, again, not very dramatic, but the pronounced interictal moodswings were starting to assert themselves. So life became meltdown city, because I was having more seizures, and that's just the direction my brain was taking things at that time--hyperreactivity in all ways. It got worse after my stepdad smashed my head into a doorframe rather than not stand in said doorframe, consistent with a blow to the seizure focus.<br />
<br />
When I was in high school the doctor did ask if I was losing time (yes) or having deja vu (also yes) but my mom told me that if I said yes he'd think I had a brain tumor. So that became a moment of lying because my mom told me to, and thus not getting back on meds. She made me scared to tell the truth.<br />
<br />
Several years later, mommy dearest made sure I got a diagnosis of ADHD (which is fair. I have ADHD like woah). Stories of problems on stimulants abound...and I had Big Problems on Adderall. I stopped it shortly after--off anticonvulsants, and with my one known to me experience of neuroactive medications being pretty bad.<br />
<br />
I rediscovered autism not much after that. And guess what is all over a number of autistic run pages? Anti med sentiment, that's what. And I do totally sympathize with the experiences that people had, I do. People were inappropriately medicated. They were overmedicated. They were coerced or even forced. <i>And that is wrong and should not happen. I am strongly against that.</i><br />
<br />
But the narratives and the organizations linked? So many were written not as "this happened to a person" or "this is rare but it can happen" or even "so this is a thing", but as inevitabilities. It was presented as a given that all neuroactive medications are poison and will damage your brain and probably reduce your lifespan and just generally fuck everything up.<br />
<i> </i><br />
Shortly after this, my discovery of the autistic community, and by extension the Mad Pride community, I started dating a person I went to school with. His parents were AAers. A drug is a drug is a drug, it's all poison and addictions, literally anything is better than taking a drug, et cetera. We were still together when I tried to do something about the seizures (although what I initially tried to get help for was the interictal mood swings, since they were what I could describe--I was a legal adult and still had not been made aware of a history, and a present, of epilepsy).<br />
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It took me three years after all this to even consider medication, because it was all poison, because it would shrink my brain and kill me, because life threatening side effects were inevitable and I should be proud of and roll with the interictal mood swings, that's basically a mood disorder, right? Three years of kindling. Three years of more common seizures, that recall I still wasn't aware were seizures because everyone was perseverating on the mood stuff (myself included), three years of just letting the seizure pathways get more and more ingrained.<br />
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And then I started having clusters of seizures that even laypeople noticed. They crossed the threshold from simple partial to complex partial, and thus unresponsive, and forgetting. They crossed the threshold from one at a time to clusters. They crossed over into where people would notice. The seizure became the problem, not the aftereffects.<br />
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But all medication is poison, right? Groups linked to by people I highly admire were full of that. Bad experiences were inevitable. Life destroying experiences were inevitable. That was the message, over and over and over. If it effects your brain, it'll fuck you up forever, regardless of why you take it.<br />
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By the time I got on antiepileptic medications, I was 21 years old, and terrified. My one experience with neuroactive medication, Adderall, was awful and scary and bad. I couldn't deal with that again. And the first med didn't work. The second did, but ate my blood (which is rare, not at all common). The third didn't work. Or the fourth. The fifth gave me a death rash. On and on.<br />
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And every time I said I was on Topamax, or Trileptal, or Keppra + Topamax, or whatever..."that's a lot of medication, are you sure you need that?". Autistic circles. Other neurodivergent circles. Everywhere. Rescue benzodiazepines? Yes I know those are addictive thanks.<br />
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I have intractable epilepsy. I have an incredibly high risk of SUDEP. My breathing has stopped many times. My heart has stopped at least once. All from seizure activity. I'm prone to partial status epilepticus, which can cross over into generalized status epilepticus.<br />
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There's all sorts of weird factors that go into intractability, but part of it is: how long did the seizure connections have to get established before trying to stop the seizures? And mine had a long time. A long, long time. And yet still people tell me that my medication is poison. I didn't ask them. When I want their opinion I will ask for it.<br />
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The lack of nuance, the a drug is a drug is a drug? I almost died from that (well, I did, but it didn't stick). I will be on a medgoround for the rest of my life because of choices informed by that narrative. By all means, talk about your experiences with things, but don't present them as universal. And don't present it as a moral argument (did you know? I'm weak because I can't outstubborn epilepsy. I've heard this from multiple sources). Just don't do that.<br />
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This narrative shoved down my throat, with the goal of keeping me from getting medical help for my life threatening neurological condition? It's every bit as much coercion as pushing medication is. And it's coercion that almost killed me. I don't actually give a fuck if people meant well or not, because they were letting their agenda and their feelings about how pills are bad overshadow the very real fact that people <i>die</i> of untreated epilepsy. It wasn't brave to tell me that I could try supplements and yoga. It was horrendously dangerous.<br />
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Do what you want with your body, but don't tell other people that their attempts to live a better life, or to live at all, are poisoning them. I have to live with the fallout from that, and am lucky I lived through it. Learn. Do better.Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com4tag:blogger.com,1999:blog-2147438406266555027.post-43163982732717859932017-03-30T16:02:00.001-07:002017-03-30T16:02:11.142-07:00I am or was a dancer, and that's okay except the parts that weren't (autistic athlete series)I was exposed to dance earliest of all my attempted athletic endeavors. I've been in and out of dance for years.This would not be the case, however, if I had not done gymnastics. We're gunna just throw that right out there.<br />
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Not because I don't like dancing, but because dancers are really hit or miss, as are dance environments, teachers, and organizers. I keep going back to it, so obviously I enjoy it, but there are situations I cannot and will not put up with.<br />
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My first experience with dance was a parent/child tap class when I was about 4 or 5. This was an alarmingly bad choice, as anyone who has known me for more than 10 minutes knows. I expressed a desire to try ballet at this time, but my mom wanted to take tap so tap we took. If it hadn't been such a small class (3 kids, 3 parents) I'd not have been able to deal, and I did make a habit of hiding my tap shoes. I don't remember the teacher at all but tap is the one kind of dance I unreservedly will never try again.<br />
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My next dance experience was...country line dancing of all things. My mom and stepdad met country dancing. As a family, we all went country dancing--their favorite teachers opened a club that was all ages, so we could go any night. I know it is dorky and uncool and I do not give a single fuck that it is dorky and uncool, because it was also really fun. The moves are simple, and you do the same 64 counts or less over and over and over. And the number of moves is fairly limited, so they're just remixed. AND generally one song is played for the same dance and only that dance (although if the floor isn't too crowded you can get 2 groups doing 2 different ones, and you may have a couple's dance going around the edges) so there's always a right thing to do. I'm pretty sure line dancing is the way I learned to position my body in relation to other people's bodies, just as gymnastics is how I learned to master my body.<br />
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Given where I grew up, country line dancing also offered me an in to a social activity. That all ages country club? Was a hot thing to do in my hometown, because it was something that could be done without parents. I'm from the midwest, ok? So when I had friends, I also had a place to hang out with them on Saturday nights. And I had enough mastery that I wasn't their dorky awkward friend tagging along, I was one of the people who knew a bunch of the dances and could figure out by following along many of the others. As much as people bag on country line dancing, it was a net positive for me. I made a friend there. I hung out with friends there, like a Real Kid. I learned to space my body in relation to a whole lot of others, and I developed a rudimentary sense of rhythm. These are all useful things.<br />
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In high school the Y I competed for also decided it needed a competitive dance program. One of my friends was a dancer and was transferring from her old studio for other reasons, a couple girls who took tumbling classes also danced for the Y, and I was encouraged by my coaches and my friend to join them in a class. I can do a backflip, I can do full splits, I can be taught to dance, seemed to be the rationale here. As my dance teachers also coached me, their assessment in this matter could be trusted.<br />
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And, it turns out, I could be taught to dance. We did 2 jazz numbers (one technically in the novelty category, since it had tricks) for competition and a lyrical one as well for the recital. Our costumes were pretty simple to keep prices within reach of our participants, which also meant they were not a sensory nightmare. I actually wore the top of our lyrical costume as streetwear until it fell apart. My teachers were skilled in the art of showing off all the dancers to our best advantage, and in positive motivation. We never won anything I don't think, I still don't understand dance competition scoring, but we had fun (and I got to make a teacher who I tumbled with for about 6 months really mad by doing a skill she didn't think I'd ever do, but that was just a bonus). The makeup involved was a sensory problem (fortunately I have strong enough coloring that I could make due without lipstick on stage, mostly) and the leaving at 5 AM for competition was not any more fun for dance than it was for gymnastics, but it happened.We also learned that I have too much hair for a gymnastics coach to put into one French braid but that's neither good nor bad, it just is.<br />
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These experiences--dance at the Y and line dancing--are what compelled me to take ballet in college. This was a much more mixed bag. I took two semesters, took time off, took some open classes at a studio much later, and half a term a couple years ago. The format of barre, at least, is almost accessible. You do the same families of movement in the same order every time. The choreography for each segment of barre rearranges itself, but it's always plies then tendus then jetes etc etc.<br />
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The problems are...I do not learn choreography by having words said at me. I gotta see it at least once. I can learn it by seeing. This was an even bigger problem in open floor settings because the possibility for crashing into others is significant. So I was always behind on learning the exercises. In some classes this is fine. In some it's not.<br />
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There's also elements of dream student/nightmare student that happened in ballet. I'm very flexible. This is a constant. Ballet teachers love this. Except my turnout is really, really bad. Like horrible. And teachers, to a greater or lesser extent, treated this like a won't rather than a can't. I really can't get my hips to turn out more than 90 degrees (perfect turnout is 180). I also had a really hard time finding my arms until I danced in wrist weights for a month, which exasperated my first teacher. My last teacher though is the reason I'm probably done with ballet. Not only am I flexible, I am muscular. I am descended from people who, like, live their lives on horses. Who get on and off at speed. My musculature reflects that--it's quick and it is bulky.<br />
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No one gets to tell me I jump good for a big girl. I jump good for <i>anyone</i> and it's a really twisted world in which someone is telling me that my body is too big. No one's body is too big.<br />
<br />Between the body snark and my knees always hurting from trying to maximize my turnout, and the taking my inability to learn choreography without actually seeing it personally, I was done. That's not ok. This is a community college ballet class here. I don't need that shit in my life, so I walked out & dropped the class.<br />
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Not to say ballet was completely negative, although it was ultimately an environment I will not deal with. One of the projects I was part of was setting up a dance class for autistic children who couldn't, or couldn't yet, access the class settings available. We had three students and three assistants, and only one wasn't autistic. They all learned things, performed in the recital, and two of them transitioned to integrated dance classes (and in one case, theater as well) in our pilot year. The program is fully funded in perpetuity. Although I've grown in my ideas about "for autism" dance classes and such, I was really proud to be part of it. That was the least restrictive environment, at that time, for our students. If I had not done ballet, I'd not have gotten to be involved in that (and they'd probably have done it in a more neurotypical-focused way).<br />
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Other dance bugs bit me too. Enter: swing dance.<br />
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I've written a lot on this blog about swing dance, since swing dance is where I figured out that I love dancing and hate dancers.<br />
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With so much background in finding my body, and with figuring out how my body is in space relative to others, swing dance was a natural fit. It's high energy. The beat is usually pretty clear. I don't have to decide what to do if I am following. Your feet do the same thing for the most part, and the lead tells you where to go with body cues. It's social interaction but not too much, since each song is generally under five minutes. And the touching is scripted, so it worked for me. It's also generally not electronic music.<br />
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I did make friends dancing, but ultimately it's ableist as shit. Nah, the ADA doesn't apply to us, you're an asshole for saying it does. Nah, it's totally cool to go to an event that hired someone to assault you with a flash, we really wanted to go why are you mad at us?<br />
<br />I miss swing dancing but swing dancers, especially here, can go fuck themselves. I miss people trying to get me dizzy. I do. But I can't deal with the environment. At all. Jesus doesn't mean the ADA doesn't apply to you. Oh yes, that's a thing I was told. So as much as I love swing dancing, working with a partner so everyone has fun, I can't deal with the events.<br />
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Then there was modern. I actually wrote a post about modern dance on this blog, sort of. The format was extremely accessible and the teacher wanted students to learn more than he wanted them to Become Dancers. Some of the movements were alien to me, but it was fun and progress was seen as good. My flexibility was also not an excuse to expect ridiculous things from me.<br />
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Around this time I also attended a belly dancing class with a friend of mine, although I had iffy feelings about it and cultural appropriation. I hated the first teacher instantly for her autistic hate (she has A Brother) and for the way that she didn't adjust her teaching, at all, for the learning and body styles of the students. Throwing advanced things at us and saying "oh just relax" doesn't work for me. Our second teacher spoke biomechanics, so that actually did work for me and I learned a lot. She also taught the way I learn choreography (show me once. Do it with me twice. There we go now you know). Alas, she said things that were low key racist and then high key ableist. So we were done there. The last teacher we tried...said things high key racist and I was done. I've also decided that belly dance is not mine to do, but the holy shit bigotry from teachers didn't help.<br />
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Dance has been a mixed bag. I am glad I tried it, even tap, but the culture is so hit or miss that whether a class will be great or terrible is a hard guess. In a perfect world all kids could be safely exposed to dance but we clearly don't live in that world.Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com3tag:blogger.com,1999:blog-2147438406266555027.post-8831377871695361282017-03-26T23:07:00.002-07:002017-03-27T11:22:44.316-07:00Why gymnastics? (athletic autistic series)My longest lasting and arguably most successful athletic endeavor was gymnastics. I took tumbling classes when i was little, messed around in the yard, took classes again, competed, coached, competed while coaching, retired suddenly and unwillingly, coached more, did 2 more meets while coaching, and judged.<br />
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I do a lot of things, I love a lot of things, but gymnastics is arguably my soul. It's been an enduring passion. And my mother hated it, but I loved it enough to keep fighting to do it.<br />
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There's reasons for gymnastics of all things. They're not the kid doing cartwheels on the playground legends you hear, but they are reasons nonetheless.<br />
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I don't look like a gymnast. Well, that's untrue actually. I'm built basically exactly like Svetlana Boginskaya, a gymnastics legend who competed in 3 Olympics. But she doesn't look like your classic 80s & 90s gymnast either. I'm legs and arms and limbs and moved like I was only vaguely aware of my extremities. But as far as my mom was concerned, I was going to be taller than 5' so I was too tall to be a gymnast, she can't touch her toes so I am not flexible enough to be a gymnast (yes, really, she said that), and basically it was the worst sport ever. My mom loathed my choice in sports until the day she died, but it was my first love.<br />
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The first thing that drew me to the gym is that it's pretty. It's so pretty. The physics, just watching, demand to be analyzed. I found that captivating. And each gymnast makes each apparatus her own. The individual nature also really worked for me. I didn't quite understand the whole team competition thing, and until you're competing for college or your country you're competing as an individual anyway. I could only mess it up for myself, not for anyone else. No one could be mad at me for not being able to do what they wanted of me. My performance was only affecting me. There were no mystical codes of how to teamwork in gymnastics like there are in team sports.<br />
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The things that kept me in the gym are numerous. I had gifted coaches--not gifted in the art of creating little gym-bots who win no matter what, but gifted in the art of meeting their athletes where they are, in finding new ways to approach challenging skills, in knowing when to push and when to stop pushing. They worked with us rather than on us. And they trained everyone as though they'd compete some day, instead of deciding some kids had what it takes and some never will early in a budding gymnast's career. In one of those gyms I'd have been done very quickly, as it was a long process for me to develop any skill at all.<br />
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The sensory aspects are of course the thing people think of when they think of autistic gymnast, and that's true. I like crashing into things. I got to crash into the ground a lot. I don't get dizzy but I do love to try. I got to try in new and exciting ways in the gym. Things bounce, and spinning and flipping is a vestibular stimmer's dream. As far as sensory integration goes, gymnastics was better than any sensory integration therapy available in my hometown, and more fun. But they aren't the only thing.<br />
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The thing about gymnastics is that you have never learned all of it. There's always a new skill or a new combination. And you have to adjust your physics just so in order to master it. And perfection is a goal, but it's a goal no one can actually meet, and everyone knows that. Everyone goes for perfect, sure, but it's not like when people seriously think that's a reasonable thing to expect. It was a place where I was allowed to not be perfect, because no one is perfect, and where I was allowed to not know how to do things, because no one knows everything in gymnastics. Even people who have skills named for them don't. Because there's so much to learn and some things just won't ever work for one person and that's ok, you can try something else and that may work better. Being allowed to find things that worked better than the little box my mom and school and everyone wanted for me? That tasted like freedom.<br />
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Granted, freedom tastes like sweat and blood and pushups and mats the smell like feet. But it turns out I like pushups and don't mind mats that smell like feet, when my abilities and inabilities are taken into consideration. When my fears are seen as rational. When failing is met with the assumption that I tried my hardest and just couldn't, rather than with the assumption that I am defiant and noncompliant and need to be punished or ignored. It was the first place where I was allowed to not be able to do things without it being treated like I was unable to do them <i>at</i> someone.<br />
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Because my failures were treated as part of the learning process instead of as me being a butthead, I learned from them. I was this awkward weak little kid, right? I was made of rubber but seriously just rubber. I was not a naturally strong kid any more than I was a naturally graceful kid. Autistic kids, disabled kids in general really, tend to be treated like anything we can't do on the first try is a thing we will never be able to do, but gymnastics isn't like that. If you can't do the skill, you do more drills, you condition more, you stretch more, you try again. You fall? Try again. You can do it 10% of the time? Try again and then it'll be 20% and then 40% and then 98%. That 2% of the time you can't do the thing you can totally do? That's not because you are autistic or because you are being difficult, it's because no one is actually 100% on anything. Very close yes, but anyone can miss something that they basically have mastered. It happens. It's a thing. Your failures may be vanishingly rare, but anyone can mess up and that's life.<br />
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So I found my body parts by finding them over and over and controlling them in gymnastics. Because everyone was learning mastery of their bodies...I learned mastery of my body. And learning to do a backhandspring is way more rewarding than touching nose. When you can do backhandsprings you get to do back tucks. And then back layouts. And then twisting layouts. And on and on and on. When you touch nose you get to listen to other boring orders. The corrections in gymnastics actually mean something. No one was telling me to do things so they could control me. They were telling me to do things so that I could control myself, at greater velocities or amplitudes. Implementing what they told me was rewarding, intrinsically, for me. It didn't earn a token. It meant I did this ridiculously hard thing that I wanted to be able to do for myself. In a world where I was expected to do the things everyone else wanted me to do, it was all about the "do this because then you can <i>do</i> this and that's awesome".<br />
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And once I found my body parts? I found poise and confidence too. I was good at something, not because someone built me from raw parts (no more than any other gymnast) but because I did the work. You can't hand over hand all those push ups. Muscles don't work that way. It was a success no one else could claim. Those trophies were mine. Those oohs and aaaahs at the spring show were mine. I learned to cover every inch of ground I walked on, and that I deserved to. It was a place to be proud instead of being ashamed that I care about things. Gymnasts can be intense. It's not a liability to be single minded when you're attacking a new skill.<br />
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As I got too injured to continue, I still got to pass on the sport, too. And I get to judge. People never think of autistic people as being good at these things, but we can be. The devil is in the details and gymnastics is all details. Analyzing what is going wrong, conveying it as a coach or quantifying it as a judge, that's totally an autistic-friendly thing to do. Details. Yes I will tell you, young person who wants to fly, every detail. And we will work them out together, and you can defy gravity too.<br />
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Gymnastics is why I can do so much of what I do now. It's why I can do the athletic pursuits I still pursue. It's why I can present--and where I learned to own the stage while doing so. It helped me find the edges of my body when early intervention sought to teach me they didn't even exist, that I was just an extension of other people. Gymnastics may very well be why I am still here at all.<br />
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So fuck yeah gymnastics. <br />
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<br />Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com2tag:blogger.com,1999:blog-2147438406266555027.post-32296449443646537232017-03-25T21:13:00.000-07:002017-03-25T21:13:23.528-07:00I'm kind of a jock and that's ok--series introductionA common stereotype about autistic people is that we are unathletic, that we are bad at sports, that we don't like to move our bodies.<br />
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This is not strictly true. However, our community is full of people who have had really bad experiences with sports and other physical activity because the environment was wrong or the instructors were wrong or the activity was a mismatch. I have had some of those experiences, but I've also had some great ones.<br />
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I did gymnastics, and it was wonderful. I danced, and the activity was fun but the people were Problems. I played both wheelchair and on feets basketball (at college and in middle school, respectively) and it worked out ok. I do archery and while my favorite range isn't open in the winter, it's a thing and it works for me. I currently do aikido and it's managing to fill the gymnastics shaped hole in my life enough that I no longer dream about going back to the gym (that's pretty amazing).<br />
<br />There's reasons these things worked. Some are in common among all of them. There's reasons the environments did, or didn't, work. There's common themes. And the prevailing wisdom is that we are bad at moving our bodies and we're in a weird space with access to such activities anyway that it's important to offer an exception, if you will.<br />
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So over the next week or so I will be writing about the structured movement things I do, to offer a narrative of "actually we totally can do this".<br />
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I'm kind of a jock and that's okay.Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com2