Options to unite people on sites- Good conversation

[DannyB II]

I am a Wayne K follower.  Met him on the discussions that would return on AbsoluteWrite.  I just got too curious.  I was absolutely stunned when I found the website listing so many questionable programs over the years.

Were you in a program?

No, but I did experience institutional abuse (public school) when Asperger's was not a widely recognized neuro-developmental disorder.  I do have experience with locked cubicles, having to stay in them 8 hours at a time, 5 days a week and be neglected during fire drills while in these cubicles.  I do understand that terror.

My god Xelebes this is just horrible. This doesn't sound much different from what many have related to concerning being isolated against your will.
Thanks for coming aboard, I really don't care what your credentials are, you understand.

[Xelebes]

I posted an article in the Rubbernecking thread about those "opportunity rooms" as they were called.

[DannyB II]

This is a Facebook site I am a member of..https://www.facebook.com/AutismAwarenessPage
I have family members that are autistic (adopted) and a cousin with Aspergers all have the same mother.
My aunt was inspired to adopt these two boys years back when she realized her daughter had Asperger's
and no one was willing to help her not the school system, local mental health services ect...
There has been some change since then, late 60's, but not much if you were to ask me.

[Xelebes]

I post on WrongPlanet too, if you are aware of that site.

[DannyB II]

I post on WrongPlanet too, if you are aware of that site.

No I was not but I will check it out. Thanks!!

[DannyB II]

One last blog I check into, this letter was there. I found it inspiring.
http://juststimming.wordpress.com/2011/ ... m-parents/

Just Stimming…

A land we can share (a place I can map)
Dear “Autism Parents”,

with 9 comments

I want to clear a couple of things up.

1.

I don’t have autism. I am autistic. This is important to me. It also doesn’t mean that I “see myself as a disability first and a person second,” whatever that is supposed to mean. In my eyes, I’m Julia. Just Julia.

I cannot separate out which parts of me brain are wired because baby I was born this way and which parts of my brain should be marked off as AUTISM. Nor do I particularly care, to be honest. I am Julia, and a significant fraction of Julia is autism (and thus, via the transitive property, I am autism but that’s not the point). Am I a writer because I’m Julia, or because I’m autistic? My writing is good in its own right, I am told, and it’s also fundamentally shaped by my neurology–just like yours. I like Glee and Phineas and Ferb and also Sudoku. Am I allowed to have a personality and preferences, or just perseverations? Is my deeply and inconveniently round-about, pedantic, literal, and analytic way of thinking and using language a sign of a what a profoundly gifted child you were, Julia (and you know, no one ever tells the kids in the gifted programs that they see themselves as gifted first and human second, or that they should call themselves “persons who experience a label of giftedness”) or is it a symptom of some monster hiding in my neurons?

I would argue that it’s both, and that it doesn’t matter. Being autistic fundamentally shapes how I perceive and interact with the world, with a million cascading and subtle consequences. I would not be the same Julia I am now without whatever parts of my brain can be marked as AUTISTIC (and that’s bad science in the first place, the brain is a whole lot more complicated and subtle than that, we know that there isn’t one gene or one wiring variation that leads to autism). I also wouldn’t be the same Julia I am now if I hadn’t skipped eighth grade, or hadn’t spent a summer at Stanford, or hadn’t been in choir ororor…

I’m Julia, and I’m autistic, and I will apologize for, justify, qualify, neither.

2.

The dichotomy between being a person and having a disability is a false, and useless, one. It’s based in the notion that people with disabilities they can’t hide or that we can’t pretend to ignore aren’t people. In a certain, socio-linguistic, sense, that’s true. Disability is used to mean something inherently bad and wrong and scary and consuming and destructive and sick, and why would you ever want to include that in any way in your identity or personhood? I myself have said that in a perfect world, there would be no such thing as disability. But please, pay attention: it’s very, very important to look at how the same word can be used a few different ways here. In the above scenarios, where disability means bad, I’m quite literally talking about what disability means, what the word is used to signify, what attributes are assigned it, how our current modern Western society places it in context and value. But that’s not what disability inherently, objectively, physically and literally is.

When a car is disabled, it doesn’t work the way it was designed to work anymore. Human beings, though not designed and constructed in factories like cars, are similar. There is a certain range of activities and capabilities to which most of us are accustomed. When someone isn’t able to match up, they too become disabled. Difficulty walking, talking, hearing, seeing, eating? Disability. This is what disability is.

Notice, though, that when a car stops being drivable it doesn’t also stop being a car. Similarly, a human who can’t do some expected human things doesn’t stop being a human. In some contexts, a car that can’t drive is a bad car, worthless, lesser, low- or non-functioning. In others, though–art, architecture, scrap metal (remember, humans aren’t cars and these examples don’t have direct equivalents for us, please don’t try and find the scrap-metal humans), a car with an exploded wheel is valued positively. Similarly, in a world without stairs, using a wheelchair can be an advantage. In a world where everyone uses sign language, only speaking with your mouth is a disadvantage. Meaning and value and worth get assigned to people based on how useful their range of capabilities and potentials are for various activities. A person who can’t participate in the activity they are expected to is disabled. This is what disability means.

A disability is a stigmatized difference, one we haven’t found a slot for yet. I would love for that stigma, that disabling context, to go away. The raw physical difference itself though? It’s a part of me, and I’m not going to hide it, ignore it, or lie about it.

3.

Quite frankly, it doesn’t matter whether or not I see myself “as a person first, and a disability second.” It’s not going to keep me safe. I know exactly what the other people in the store think when they see me rock, flap, cover my ears.

On the internet, maybe, I have the luxury of expounding on the finer points of person-first versus identity-first language. In real life, in a world where our parents kill us, our classmates abuse us, and our employers are virtually non-existent? I really don’t have that luxury.

4.

As long as there are people demanding that I call myself a person with autism, as though I am just cohabiting with two different brains, one of which I should really want to discard at the soonest possible opportunity, I will call myself autistic out of sheer defiance. The autistic parts of myself are always what are going to be punished and cut away at, they are what are going to get me hurt and killed, and I will put them in the front where everyone else already sees them and fly them as a goddamn flag.

5.

I am not flattered when you say that I don’t really see you as autistic or it’s just a label.

Because what you mean is that “I don’t really see you as Bad right now,” and while I am incredibly grateful for that safety, I am also furious that autistic means Bad at all in the first place and that I feel I have anything to be grateful for in that entire situation.

It is, indeed, just a label. One without nearly the neutrality of, say, Campbell’s Chicken Soup. All your wishing in the world won’t change that, and taking away the words I have for my experience just hurts me so you can feel a little more enlightened.

For the record, I don’t really see you as much of an asshole, usually.

6.

“But my child!” you say. “My child can’t feed themselves! My child needs diapers! My child cannot be left unsupervised! My child is medically affected!”

Well, yes. Your child is disabled. So am I. I thought we were past that?

(Is Steven Hawking low-functioning?

My child is no Stephen Hawking. Indeed. Neither am I. No offense, but neither are you.)

So often the dividing line between really disabled (my child) and high-functioningaka not really disabled(you, a self-advocate disagreeing with me) is writing a blog post or making change for a purchase or reading. I remember being told that if someone can add and read, they can live independently. Well I hate to break it to you, but I am very good at both of those things and I can’t live independently, not even close. I just don’t think that this inability makes me worth less or nothing.

I’m not disparaging the reality of complex developmental and physical disabilities. My own world must function in a parallel and yet fundamentally different and separate realm from even that of my typically developing sister. I have enough imagination, enough personal experience with my own disability, enough time spent living and working with other disabled people, and enough of an ability to hear what people who live with complex developmental and physical disabilities have to say, to know that in some sense it’s a question of scale and that the experience can be dehumanizing for everyone involved.

I’ll spare you the gory details of my life, in part because they are private and in part because I refuse to be a self-narrating zoo exhibit. Been there, done that, Temple Grandin and Donna Williams are better at it. I’ll just say this: it never ceases to amaze me how an entry posted every two or three weeks in the ether about deserving human rights somehow reveals–or, rather, erases–the every intricacy and ramification of a person’s disability in their life.

7.

If my child could write a blog post like this, I would consider him cured. Fascinating. Have you taught him how? Have you given him the time, tools, technology, and accommodations he would need to do so? Have you exposed him to the ideas this blog post runs on, or has he been sheltered and infantilized? Has he been given an accessible, for him as well as his audience, means of communication? Remember, behavior is communication, that’s Best Practice. Have multiple literacies been facilitated? Remember, everyone reads, everyone writes, everyone has something to say is the current forward-thinking in special education, especially for children with complex access needs. But you’re an advocate for your child, of course you must know that. Silly me, I apologize.

Have his attempts at self-determination and self-advocacy be respected and responded to, regardless of form, or has he been taught that passivity is better?

If he were to want to blog about his favorite cartoon, would that be okay? Or does it need to be serious, age-appropriate, legitimate-in-your-eyes business, every time, all the time–because there are no frivolous blogs anywhere on the internet, are there.

If he were to want to document and share his thoughts via, say, music or a painting or an arrangement of objects, would that be okay? Or must it be words?

Are there limits on chances for this? Is any human being ever stagnant?

Oh, and by the way, your child is still a child, right? How many children blog, do you know?

Sorry, I thought this was worth taking seriously.

8.

I am not going to make nice.

It’s a common directive. We all want the same things. How can we ever expect anyone to listen to us when we can’t disagree respectfully amongst ourselves?

I am not going to pretend that a power imbalance doesn’t exist. I am not going to pretend that when non-disabled people attempt to end a discussion with self-advocates they did not enjoy, it is with chastisements and pleas to just get along which hit about a million times harder when aimed at someone who’s been taught to have quiet hands and who’s first sentence was Iwantball PLEASE and who, when they were bullied, was sent to social skills training while their abusers were left roaming in powerful packs of friends.

(In no other minority community is this level of power-play tolerated. You are not our voices, we are not the same, we do not want the same things, and if you aren’t disabled? Then by definition you are not a member of the disability community.)

You have the power. If you do indeed, as you claim, want to be allies, then I suggest you start acting like it.

(And, because I must be nice and patient and helpful and I must educate the people telling me to shut up: for god’s sake, if being an ally, let alone a super-special parent ally, is so very hard, check out PFLAG.)

9.

This is not a “disagreement.” You know what people disagree about? Pizza toppings, ice cream flavors, what Shakespeare meant in the third stanza. Things with small consequences.

You know what happens when we “disagree” about disability?

People die. People get aborted, people get institutionalized, people get sterilized, drugged, and neglected, people go without necessary support and services, people are dehumanized, people are abused, people are silenced, ignored, and erased, people suffer emotional and mental trauma and distress with life-long consequences.

Just as “disability” has become an ugly word for a physical fact, so “disagreement” is being used, here, as a polite word for an ugly thing.

I call bullshit.

10.

I started blogging, years ago, as a therapy tool, as a way to modify journalling so it would be accessible to me. It turned, slowly, oddly, and very autistically, into a method of communication. Now it’s one of the ways I advocate for myself and my people. Mostly I think of it as a survival strategy.

On days like today?

It’s just a lifeline.

[none-ya]

C'mon JJB, the same posts , multiple locacations. The judge and Danny B. Now that's a tag team to be reckoned with.
Go ahead layeth the smackdown.

[none-ya]

"Do what you feel in your heart to be right – for you’ll be criticized anyway." — Eleanor Roosevelt

More republicans quoting dead democrats.

[webdiva]

Blah Blah Blah!  All that time you just spent writing this bullshit up you could be using to help save kids! LOL  Go away Danny, no one gives a fuck about anything you post here..

One of our admins here Kelly Matthews is a member of The Reddit Trouble Teen Group, she is also the owner/admin of the TTI Site http://www.troubledteenindustry.com/ that asked me to adopt a different user name Quagmire, then turned around and leaked the information.

[webdiva]

He REQUESTED I kick him off. That's the funny thing. LOL

Danny, You got your ass kicked on another site and then you come here crying? Are we supposed to defend you?




hhhmm........




let me think about it.................







naaahh......................

[uwimage]

I've tried to follow here and there a bit but dude, you are the perfect example of a 'dry drunk'.

[Ursus]

Danny, can ya please explain to me why you originally started this thread as a personal flame war against specific posters, originally titled "Matt and Felice on Reddit Group W/Kim Morelli" ... and then changed the title to "Options to unite people on sites- Good conversation," and started posting about autism?

This is a Facebook site I am a member of..https://www.facebook.com/AutismAwarenessPage
I have family members that are autistic (adopted) and a cousin with Aspergers all have the same mother.
My aunt was inspired to adopt these two boys years back when she realized her daughter had Asperger's
and no one was willing to help her not the school system, local mental health services ect...
There has been some change since then, late 60's, but not much if you were to ask me.

It seems to me if that there are a number of threads already in existence about autism and/or Asperger's, or you could even start another one, but to try to hijack this thread and turn it into something completely different, not even remotely related (as per subject matter as well as content of anybody's post herein thus far), is... well... hmmm.

Am I missing something? Can ya please explain to a tired old bear what exactly was/is the point of all this? Thanks!

[webdiva]

Danny, can ya please explain to me why you originally started this thread as a personal flame war against specific posters, originally titled "Matt and Felice on Reddit Group W/Kim Morelli" ... and then changed the title to "Options to unite people on sites- Good conversation," and started posting about autism?

This is a Facebook site I am a member of..https://www.facebook.com/AutismAwarenessPage
I have family members that are autistic (adopted) and a cousin with Aspergers all have the same mother.
My aunt was inspired to adopt these two boys years back when she realized her daughter had Asperger's and no one was willing to help her not the school system, local mental health services ect...
There has been some change since then, late 60's, but not much if you were to ask me.

It seems to me if that there are a number of threads already in existence about autism and/or Asperger's, or you could even start another one, but to try to hijack this one and turn it into something completely different, not even remotely related (as per subject matter as well as anybody's post herein thus far), is... well... hmmm.

Am I missing something? Can ya please explain to a tired old bear what exactly was/is the point of all this? Thanks!

He was hoping to make a friend.

[Ursus]

One of our admins here Kelly Matthews is a member of The Reddit Trouble Teen Group, she is also the owner/admin of the TTI Site http://www.troubledteenindustry.com/ that asked me to adopt a different user name Quagmire, then turned around and leaked the information.
That group really has two of the biggest distractions there, Pixal and Kelly. Neither are survivors and both have enough influence to sway other survivors to choose over one another. How in fucking gods name did Pixal get Reddit to give her a group in their name is beyond me. Then turn around and use it to discriminate against survivors. This message will be a point I will be raising in the near future because a group such as this is not helping children or their parents at all.

< snip snip snippitty snip >

Danny, You got your ass kicked on another site and then you come here crying? Are we supposed to defend you?




hhhmm........




let me think about it.................







naaahh......................

He REQUESTED I kick him off. That's the funny thing. LOL

Ok, lemme get this straight... Danny experiences some personal differences with some other posters on the reddit site, requests to be kicked off, and then comes here to complain that he was kicked off and proceeds to flame those who he had personal differences with, as well as the moderator(s) who complied with his request?

Is that how it went down?

Just askin'...

[webdiva]

One of our admins here Kelly Matthews is a member of The Reddit Trouble Teen Group, she is also the owner/admin of the TTI Site http://www.troubledteenindustry.com/ that asked me to adopt a different user name Quagmire, then turned around and leaked the information.
That group really has two of the biggest distractions there, Pixal and Kelly. Neither are survivors and both have enough influence to sway other survivors to choose over one another. How in fucking gods name did Pixal get Reddit to give her a group in their name is beyond me. Then turn around and use it to discriminate against survivors. This message will be a point I will be raising in the near future because a group such as this is not helping children or their parents at all.

< snip snip snippitty snip >

Danny, You got your ass kicked on another site and then you come here crying? Are we supposed to defend you?




hhhmm........




let me think about it.................







naaahh......................

He REQUESTED I kick him off. That's the funny thing. LOL

Ok, lemme get this straight... Danny experiences some personal differences with some other posters on the reddit site, requests to be kicked off, and then comes here to complain that he was kicked off and proceeds to flame those who he had personal differences with, as well as the moderator(s) who complied with his request?

Is that how it went down?

Just askin'...

Well he also was upset with me, because I jumped in on a thread on the reddit facebook page to defend my friend Kim Morello, this Debi girl was talking shit.  In the process of that I did point out (since Fornits came up) that Danny had in fact been posting on fornits recently.  That's all I really said, I didn't imply anything about what he was posting etc.  

Apparently this got back to him and he had a problem with it.  C'est la vie.  So he told me to remove him from the troubledteenindustry.com website. So I did.

When we started that site, people had  asked me to ban him from the get go, which I did, but then he emailed me and we talked about it and I decided to give him a chance.   But then I got an email from him (about mentioning that he posted on fornits) and he pretty much was an ass, called me an asshole, said I had no business working in this industry, blah blah blah.  So that's my part in all of this.