Traveling Show

I miss my tuba.

Remember that you have the same child you did yesterday.  Perceptions of him have changed.  He has not.  You can do this.  He has been labeled.  He is part of a stigmatized minority.  He can still have a good life.  No one has come up with an efficient, accurate way to take a census, but there are scores of autistic teens and adults on Tumblr.  We represent many iterations of the spectrum.  Some of us take questions.  Many of us have good posts for you to read or can recommend articles.

dearjimmoriarty:

Eva needs a safe place to stay in Connecticut after being kicked out of squir house. 

The few offers of space squee previously had have fallen through. 

If you or someone you know is able to host squir until squee can get back on squir feet, please contact squir here. 

Note: Since Eva is a minor, it would be safest for everyone involved for squee to stay in Connecticut due to laws on hosting people under 16. 

queernonymoose:

iamthethunder:

queernonymoose:

Jesus was best friends with a prostitute.

A prostitute that, as far as I remember from bible school and my reading, did not magically stop being a prostitute just because she met Jesus.

So for all intent and purposes, I don’t think Jesus kept asking what the fuck Mary Magdeline was doing.

Instead he was asking wtf the men were doing, and the people throwing stones at her.

Look at your hand, checkmateprochoicers, you got a rock in it.

/p.s: re the bad language, ummm Jesus committed blasphemy by doing activity on a sabbath sooooooooooooooooooo.

I understand, and like, your point.  Christians should spend less time judging.  However, you mixed up three stories.  Jesus was nice to a sex worker and friends with Mary Magdeline.  They were not the same person.  The lady that almost got stoned was not either of them.  She was a third person.  The people doing the judging can quote chapter and verse.  We stand a better chance in arguments with them if we know the Bible just as well.

Gospel of Luke says “Mary” (many times Mary Magdeline was referenced simply as Mary) was a sinful woman and wore perfume during sinful acts. Ergo, implying she was a prostitute.

It talks about the woman with the perfume.  It also describes Mary.  It never says they were the same person.  However, Mary Magdeline was an outcast.  Like most of Jesus’ folowers, she came from a poor background.  She also may have been single when that was suspicious.

http://www.bbc.co.uk/religion/religions/christianity/history/marymagdalene.shtml

queernonymoose:

Jesus was best friends with a prostitute.

A prostitute that, as far as I remember from bible school and my reading, did not magically stop being a prostitute just because she met Jesus.

So for all intent and purposes, I don’t think Jesus kept asking what the fuck Mary Magdeline was doing.

Instead he was asking wtf the men were doing, and the people throwing stones at her.

Look at your hand, checkmateprochoicers, you got a rock in it.

/p.s: re the bad language, ummm Jesus committed blasphemy by doing activity on a sabbath sooooooooooooooooooo.

I understand, and like, your point.  Christians should spend less time judging.  However, you mixed up three stories.  Jesus was nice to a sex worker and friends with Mary Magdeline.  They were not the same person.  The lady that almost got stoned was not either of them.  She was a third person.  The people doing the judging can quote chapter and verse.  We stand a better chance in arguments with them if we know the Bible just as well.

trafalgarslaw:

I have seen a lot of people claiming that the concept of intelligence is an inherently ableist one.

While I do agree that yes, judging someone’s worth based on his perceived ‘intelligence’ is not a good thing, I don’t think the concept should be scraped entirely.

Keep in mind that I am commonly considered to be above average intelligence (despite the fact that I have so far failed every single IQ test presented to me).

I knew how to read and write fluently and do basic thousand math(uh… basically, what’s the highest number occurring) after about three months spent in first grade. I spent most of my years at primary school being bored, lonely, bullied or annoying my teachers for more work.
I had, three weeks after starting third grade, solved every single ‘extra’ assignment my teacher had prepared. I never spent any time learning for anything during primary school.

I got through sixth to ninth grade with spending a few hours learning vocabulary before ever French or English test and I got through with grades far above average. And again, I spent four years being bored, bullied and lonely.

While my situation did improve noticeably when I started tenth grade, I was still extremely under-challenged, to the point where I could skip doing any and all homework and any and all learning and my grades were still above average. And again, I spent most of my time being lonely and bored.

And when everything broke down last year in autumn because I wasn’t able to cope with school any longer, I still had a 5, 5.5, or 6 (with 6 being best grade) in every single subject apart from the one I had to skip since the end of summer holidays.

I’m not a better person than someone who barely manages to get pass-grades. I’m not a better person than someone who finished school after ninth year and got an apprenticeship.

But I’m not a worse person than them, and I believe that this, at least, should give me the right not to spend years and years in state-mandated hell.

School, even the way it is set up here, even with the splitting up they do after fifth and ninth year, still tries to treat everyone the same, regardless of performance on any given subject. And while someone who can’t keep up has the right to repeat years or to move to a lower level or the right to receive extra lessons, someone who is ahead of everyone else will just be forced into nine years of boredom and bullying because someone decided it would not be fair to judge people’s performances.

No, don’t make intelligence a number to be assigned to someone for the rest of their lives and don’t make it something to decided what they are allowed or prohibited from doing.

But give those bored and bullied kids a word to apply to themselves so they can get out of a situation that hurts them. We have so many proper words for people whose performance is ‘worse’ than expected or ‘worse’ that average. But there is no accepted word for those whose performance is ‘better’.
There is no word that would allow me and those like me to escape the hell that is public education. There is no word that would allow me and those like me to escape nine years of state mandated hell*. There is no word that allows me and those like me to speak up about our problems without receiving condescending compliments in return.

Being ‘above average intelligence’ (whatever that means in terms of real live) is not a privilege. It can be useful at times, it can keep me from a lot of stress and it will look impressive on a shiny diploma.

But it does fuck all to change the fact that it resulted in me being forced through twelve years of state-mandated hell with no way out and no one willing to help.

Redefine intelligence, change it, make it more diverse, I don’t care. But don’t take away the only thing that would grant me and those like me a few hours of reprieve from being bored, bullied and lonely.

(* well, yes, there is ‘fucking expensive private school’, but since that is usually neither affordable nor accessible, it doesn’t help a lot)

Everyone has some gifts.  No one has all.  While we should be careful around the concept of conventional intelligence because it has been used for ableist purpouses, but discounting one kind of ability does not solve the issue that other types have been devalued.

My article is at the mercy of an editor.  I hope it still has teeth when it sees daylight early this week.  I am struggling to stay off the Internet and rest, failing, fretting over being on the wrong continent in the middle of JRC protests and vanishing Twitter followers, talking with the extroverted waiter stuck in the ship’s empty bar where I lurk, trying to write poetry.  Before I was political, I wrote a sonnet nearly every day.  Sometimes, they won prizes.  I rarely have time for that now.  Vacation is going as well as it can.  I do it badly.  It takes a great effort.

The two tuba sightings were fun.  Is it sad that I liked them better than the palaces?  The second was outside of Catherine’s palace.  He had a rotary valve helicon that must have been well over a century old.

brittxpensonx:

Got the email today about more details of the program!  It all seems just a tad bit exciting.  It has also got me thinking about what to pack, an excuse to go shopping is what I am seeing.  Ahh can not wait =] 

Ask autistic people what we think of them.  You might reconsider working with Autism Speaks.

I want to play once more before I start two weeks without an instrument, but my sister is asleep.  I want to buy books for the trip, but Mechanical Turk people are not rushing to pay me.  A guest-blogging post, which will hopefully go out to my largest audience yet, is on the editor’s desk.  I will not sleep properly nor stop fidgeting until it goes up.  My family is doing what my car does when I try to do ninety on the rural Georgia highways: complaining, struggling, and overheating from the strain.  My response should be as follows:

The image is a screenshot of a tweet.  The avatar is a masked child, a little girl with paper covering her face.  The author of the tweet is Mary Stimming, @LeeLeeSass.  The tweet is dated 110 February and reads: ‘I know freaking out is your hobby, but seriously, try not to freak out. (water flowing over the side of the tub)’

The family friends’ ill-behaved eight-year-old is a great, little honey badger.  In most areas of life, so am I.  I tromp through the world in boots and that awful coat playing tuba, raising hell, and somehow making good grades.  This was the year I gave up my personal policy against being seen with alcohol in public, the year when my single room meant it was okay if I occasionally passed out fully clothed when studying and online quarrels kept me up until awful hours.  From regular haircuts to any certainty about whether my car would run, I let things go.

International travel is not terribly stressful.  I am almost a nomad.  I live more in my car that anywhere else.  I can lay my head in Durham, Decatur, Atlanta, Chicago, Boone, Deep Gap, Johnson County and call it home.  While I am not quite Texan enough to live there, the broad, open landscapes of the Southwest feel comfortable, too.  I am content with the tight-cornering sedans of city streets and dodging them on foot, trans-oceanic jets and horses.  I am proud that I can ignore the gas and breaks the last mile into Aho Gap, coasting steadily through strategic use of the transmission.  I must have absorbed it from my grandfather without knowing it as a child.  If anything, flying is easier.  I read, eat chocolate.  Someone else tries not to crash, pure luxury.

This is how I take off for another continent thirty pounds under the baggage weight limit, stressed but not by the trip, while my family panics.  It is also why I strategically procrastinate, running some errands at the last second.  It is not disorganization.  It is a calculated plan to have urgent business out of the house.

dearjimmoriarty:

Our world was constructed upon them

Your personal opinion that they do not exist and that they are not directly affecting every single person on this earth doesn’t matter for shit

Not talking about them will not make them go away

thefaulknerian:

i get really uncomfortable when people post pictures of children on the spectrum and declare their ASD. because i think, well, what if they don’t want other people to know about it? what if they get older and they want to keep it quiet? what if someone were to find that relative’s post (somehow) and learn, hey, this one’s autistic? and then they get bullied more than they may already be. i was bullied plenty before my diagnosis, and i consider myself lucky that in later years i’ve encountered less and less of it. i’m willing to be open about my anxiety and depression (though i won’t mention it all over the place), but i can’t imagine people outside my circle of friends responding well to knowing i have asperger’s. 

just

don’t spread that stuff around without their consent. especially not to strangers.

i mean, generally we tell kids not to give their information out to strangers on the internet, so why is it acceptable to do this? it’s one thing to share family photos of kids having fun and stuff, but telling strangers about your kid and their condition is just…i don’t know.

Parents, siblings, and other loved ones, please read TheFaulknerian’s PSA.  Take this seriously.  Let the children in your life make this decision for themselves when they are old enough to make informed choices.

snowdarkred:

If you have old bras that you don’t want anymore but are in good shape, donate them! Bras are one of the least donated and most needed items at domestic violence shelters across the US. Look up a local shelter and ask them if they’re accepting bra donations, and if they’re not, ask them who is! Check with homeless shelters and other charities!

Every year, the company I work for holds a large-scale bra donation campaign. My store collected almost a thousand bras to support women (and other breast-having people) in need. 

So again:

DON’T THROW YOUR OLD BRAS AWAY.

DONATE THEM!

This is something people should know.

I should go to bed.  I have been under the weather for days.  Sleep would help.  Sleep would be sensible, but the persistent urge to play will not leave me alone. 

almondsofcobalt:

FUCK THIS BLOGGER

INSERTWITTYREMARKHERE.TUMBLR.COM

IS AN IGNORANT PIECE OF SHIT MAKING FUN OF AUTISTIC PEOPLE.

Feel free to go to this dip shits blog and send some hate mail.

ONLY A FUCKING LOSER WOULD MAKE FUN OF THOSE WITH AUTISM.

I would like to simultaneously express support for the blogger you attacked and ask you to be silent.  Wakefield lied.  The best of us are fooled sometimes.  You are not so dazzlingly brilliant as to be immune.  The falsehoods you disseminate endanger public health.  If someone believes them, vaccination rates fall, herd immunity erodes, and people die, you are responsible.  Do you want that?  Read about nineteenth century child mortality.  Do you want to live that way?  I got autism from my father, born in 1963.  Autistic people did exist then.

InsertTwittyRemarkHere did not try to use us.  You did.  Have a spat with someone who reasonably, respectfully called you a minor menace to society by yourself.

The college is nearly empty.  Public safety is still patrolling through the night.  I can play tuba at two in the morning if I so choose.  No one will throw things.

becareful-its-lacedwithtea:

And I’m not really sure what to feel right now.

I was diagnosed today. Almost 18 years old and diagnosed today.

I’m reading some blogs about it and I’ve come across this one post about the musculature of the body in people with aspergers. It says that there is “low muscle tone.”

“One of the major issues with Asperger’s syndrome is “low muscle tone” a condition in which the layering of musculature on the body doesn’t provide effective support. This causes a person to lean or to slouch. Slouching puts strain on the back and can cause long term posture issues and back pain.” -http://life-with-aspergers.blogspot.com/

Which would explain EVERYTHING.

I am incapable of supporting myself and I have a hard time sitting “right” or pulling my head up, even. I have terrible neck and back pain due to muscle problems.

And it’s not only the muscle thing. It’s everything else.

The little wrinkles in my socks would throw me into fits and the material of clothes will drive me absolutely batshit and I am far too physically sensitive to ever be comfortable. 

I am completely stupefied by someone else describing exactly what it is I go through on a day to day basis. I thought I was alone.

I want to cry and get angry and I feel empowered all at the same time. I cannot believe that this is what has caused almost ALL of the frustration and terrible sadness.

But now, at least, I know what makes me different in this sense. I despise it but at the same time I have a kind of…appreciation for it. I think doing more research and getting into therapy will help me not only come to terms with this but also help me utilize it. I guess I am on my own on this. It’s up to ME to look into it because no one else will. 

Ultimately, it is up to you.  However, there are enough of us here to offer camaraderie and support if it helps.

illshakeitforyou:

There’s this kid talking to me on Facebook. I’ve known him for a while; he was in the special ed class I helped out with in my high school. I helped them out every day in gym. Well, now he’s hitting on me, and he knows I have had a boyfriend for the past 2 years, and I really don’t know how to handle this…

As an autistic person, I think you should treat him as you would any other guy.  Be nice but firm.  If you are not interested in his advances, politely reject them.  That is treating him like an equal.  That is respect.  Getting shot down is bad.  Being led on is worse.

xalania:

My name is Lania and I’m currently researching Asperger’s Sydrome for a psychology project. I, myself, am not an Aspie and do not have the pleasure of having first hand relations with anyone that is, so it’s difficult for me to fully comprehend AS, and the last thing I want to do is to be ill or misinformed.

Now, it’s all very well said and done to go onto the internet and research or dip into a book and find common characteristics of a disease, condition, impairment, disability, etc. as to whatever it might be, but one cannot say they have a true understanding until they speak firsthand to someone who has/had it.

This is where I need the internet’s help.

If you have or know anyone who has experience with AS, I’d really appreciate having a conversation with you and having you submit a questionnaire to me. I’d just need you to answer a few basic questions about daily life, schedules, prejudice or difficulties you or the person you know faces, and a few other things. Anything you aren’t comfortable with answering doesn’t have to be.

Not only is this the chance for me to learn and educate myself about Asperger’s, but also the chance to educate others and for me to reach out into the world and find new inspiration and understanding.

This could either be really good or a total flop, but absolutely anything you are willing to contribute would help me, including a reblog. You never know who follows you.

Thanks for your time!

Feel free to ask me things, but the line between Asperger’s and autism is blurry and arbitrary.  There is a guy on here who got diagnosed Asperger’s, high functioning, and low functioning in the space of a week.  I would take that word out of whatever question you are trying to ask.  There is no accurate way to find or measure it.

sir—patrick:

Read More

I am sorry to hear such hopelessness.  The way we are treated is not inevitable.  We can bring about change.  We can make a better world for our children if they are on the spectrum.

My body must think it weighs more like 160 lbs than the more-or-less 120 lbs it does.  The last forty, my concert tuba, are almost as natural to bear as my own weight.  I get tired if I carry her all day.  Too many miles or hours will leave me exhausted.  Increasingly, it takes a fair number.  We are both about twenty years old, five years together in almost exactly a month.  Her name is Aria.  At a gig last weekend, a man looked at us and intuitively grasped that no one rides shotgun more often in my car.  No one else is within arm’s reach so many hours of so many days.  He threw around words like “relationship.”  I nodded, surprised that a non-musician understood.  Life without a horn in general, and this one in particular, feels increasingly wrong.  Something is profoundly off, undesirable, about it.  I have two weeks of that coming up.  As much as I like travel, tuba makes it hard.   

sigur-roskolnikov:

If trans* people tell you something you’ve done is transphobic -

If people of color tell you something you’ve done is racist -

If women tell you something you’ve done is sexist -

If queer people tell you something you’ve done is homophobic -

If disabled people tell you something you’ve done is ableist -

If any oppressed group tells you that something you’ve done is oppressive -

- then you fucking.  Don’t.  Do.  It.  Again.

This is not complicated.

The lady in front of me in the Target check out line yesterday afternoon was wearing a shirt from the walk.  It looked like an organizer’s version, not one from a team.  I asked her whether she knew most of the organization’s constituents wish it would disband.  She spluttered, recoiled, acted like I had slapped her.  I assume she felt as I did every Tuesday night for two months.  They had a billboard visible from the eastbound lanes of I-20 in downtown Atlanta.  I never got used to it.  It always interrupted a dreamy stretch of evening.  It caught me thinking of other things.  I remember how uncomfortable, unwelcome, almost threatened it made me feel.

They need to live that way.  People who make small donations can be educated away from working with them.  It will take thousands of brief, respectful exchanges.  The numbers are the only difficulty.  To paraphrase Jim Butcher, it is like moving an engine block: hard, not complicated.  The involved, invested ones will take a different strategy.  They need to feel harried, pressured, pushed.  While I do not want them concerned about their physical safety, they should be, in every other sense, afraid.  Their activities with Autism Speaks should be something they feel the need to hide.  They should be uncomfortable discussing their work with the organization, reluctant to tell others what they do.  I want them to dread public exposure not because it is just in a rough, eye-for-an-eye way but because it would hamper their advertising and recruiting.  It would hurt their morale.  It would trip them up when they try to move in the public sphere.  Every hour and dollar they spend defending themselves, dealing with the logistics of being shunted from place to place, trying to rebrand is not going toward their goals. 

Crass as it is, the solution to the Autism Speaks problem may involve accosting strangers in stores.  I look forward to the day their leaders are too nervous about being judged to wear their shirts in public.  When they are treated like known members of any other hate group, we will have reduced the organization to a non-threat.  Never let them rest.

This is another organization that supports the JRC:

http://www.facebook.com/ABAInternational.org

Bother them if you have the time and spoons.

Here is a petition:

http://www.change.org/petitions/abai-stop-supporting-the-judge-rotenberg-center-and-the-torture-of-americans-with-disabilities

Atlanta may need an ASAN chapter.  Getting people together is too hard.  A social group exists.  Rose found it, but a look at their website shows issues.  They are far from public transportation  They have not answered my email, but activist activities do not seem to be on their agenda.  Their discussion topic descriptions make me cringe.  It seems allistic-run and deficit focused.  It is covered in the language of functioning labels.  It might be an awkward site.  If the group is any good, why reinvent the wheel?  The last thing I need is another project, especially one so daunting.  I will have to go to a meeting in July.  That will be the first after my trip.

What is it with graduations and flash photography?  Each bulb going off made me feel like I was being poked in the eye with a stick.  I hate being stuck in an orchestra pit while people snap at the stage in a darkened auditorium.

Highlights:

• The movie:Dark Shadowshas an awkward plot, but seeing it with my friend Ayren was fun.
• Arts and Crafts: The epaulettes I made between twelve and two on Saturday morning came out surprisingly well.
• The Black Sheep Ensemble Gig: it was generally good.  There was one solo space we forgot to fill in the tenor sax player’s absence, but it held together.  Andy, another tuba player, was particularly considerate.
• Tunes from the Tombs Day One: I played well considering the circumstances.  My costume received compliments.  I may have found a gig.  As usual, Oakland fed me well.
• MARTA: It ran on time.  If anyone has contact information for the proper authorities, please report that a miracle has occurred.  On the way to the station, I found my fare on the ground.
• The protest: It was attended.  People saw us.  We did a great job of being obnoxious considering that there were only three of us.  None of the participants found Esteban’s presence, pictures, and questions bothersome.
• Tunes from the Tombs Day Two: Sleep deprivation and a slightly warmer afternoon made my playing more questionable.  I generally did well, but it was harder and less fun.
• The car: I got it to the shop with four wheels.

Issues:

• Tunes from the Tombs is a hard gig.  The quality of my playing is never quite at peak because controlling the temperature of forty pounds of sheet metal in Georgia at this time of year is hard.  I inevitably end up liping things down.  I try for a compromise between tone and pitch by sacrificing some of both.  I once heard Alan Baer of the New York Philharmonic say not even he sounds great under such circumstances.  His advice was to try to stay out of such situations and keep our expectations low when they are inescapable.  I cannot feel too bad for struggling with a problem that frustrates one of the better tuba players alive.  Both horns contributed to the grime on my linen suit.  By the time I headed home on Sunday, I looked like something that had crawled out of a tomb.
• Getting rousted from the walk by state troopers was annoying.  We were three college students almost too disorganized to find each other.  We had under fifty flyers because my printer ran out of ink.  We were not much of a disturbance to an event with two or three thousand participants.
• Getting lectured by state troopers was worse.  Removing us was their job.  Telling us we were mean people for hurting the walkers’ feelings just because they want a world without us crossed the line.  Not only is that the most ridiculous thing I have heard in some time, it is not his business.  His job is enforcing laws, not his view of morality.
• My car tried to fall app art.  As the front left corner of the car sank ever lower, I knew the wheel could pop off at any time.  I was afraid to wait until Monday.  There would be more cars on the road.  The chance that people or property would be hurt seemed too high.  On the smoothest, flattest stretches of road, I could feel it wobble.  With every block, things degenerated noticeably.  Accelerating, braking, and steering were difficult.  I managed to make it limp from Oakland to the shop.  Out of time and options, I bailed, stuffed my things in my bag, picked up the tuba, and trudged several blocks home with half my weight on my back.
• Finding local autistic adults and gathering them is hard.  It would be nice if we could find each other for political and social activities.  We need an ASAN chaper or something, someone with an email list.  As little as I want another project, something needs to be done about this.