LabRat101Circa2012

 

Introduction/Definition/etc Body Conclusion Discussion Page History Page Statistics Page Views:  since creating on 20120603

 

Introduction/Definition/etc

 

Contacted by someone who read this NoVAPeers.PBWorks.com

"blog" and giving some advice to those who get contacted

to be a LabRat...

 

Body

 

So part way into the interaction, I got a request to

gain access to this PBWorks Wiki, which I granted

without a lot of fuss, later regretting, I get this response,

quoted below, for others to see and help interpret,

especially Autistics and Academics, as my reading

between the lines may be less than average,

while my intelligence, in some ways may be off

the charts, largely in ways untested by most,

but it's freak show type stuff he may be looking

for, at least the way I normally interpret

researchers and students

...

After having given page access to this wiki site,

but that wasn't what he wanted, I guess he wanted

to interact with me to see if I was what he

wanted in a LabRat...

 

Partial Quote

 

Thank you for answering so promptly!

 

Actually I have no need to access the page, I was merely trying to establish contact with you in order to ask permission to include your blog post in my material. From the searches I did on open Google, I have pieced together 177 pages of material, and I do not need any more. I have also made it a point to not venture into access restricted forums, because I have no wish to breach or intrude on autistic space. So, if you are in a position to now terminate my access to NovaPeers again, that will be fine. 

 

My full message to you read like this: 

 

I’m a neurotypical Norwegian master student of community work writing a master thesis on “autistic space” - the kind of physical and social conditions created at events like Autreat and Autscape. I have been searching the internet for descriptions of autistic space and how autistic space is created (using the search terms “autistic space”, “Autreat” and “Autscape”), and came across your blog post http://novapeers.pbworks.com/w/page/27515633/Autreat2010PoorPitifulMeAndTheTreatmentsIRantOn

 

My question: May I include your blog post in my data collection? 

 

In my thesis I am actively privileging autistic voices, and I am doing my outmost to write my thesis in a way that is respectful of autistic difference. One of my hypotheses is that the conditions created in autistic space can point to disabling barriers for autistic people in “NT” or “non-autistic space” (fluorescent lighting, noise, pressure to interact, perfume, and so forth). I therefore have a disability rights/social justice perspective, and I think you have some very important contributions in your visions for a retreat center. 

 

I aim to finish my thesis this fall (2012). It will be in English, and will be posted on my web site. If I may include your blog post in my data collection, I will be happy to notify you when my thesis is available!

 

I need to know how I should refer to you if I should end up wanting to quote you directly. You may also remain anonymous if you wish. And you may at any time withdraw your contribution without giving any reason. 

 

My regards, etc

 

 

I wished to include your blog post because I also was looking for participant descriptions from Autreat, not just the promo from Autreat itself. I have read your blog post several times, and frankly there's a lot I don't understand. But of what I think I understand, I have selected 

 

1) the bit in the beginning about there being some focus on celebrities at Autreat despite the promo, and 

 

2) the bit after the "blind leading the blind" - about how it is still possible to feel quite left out at Autreat even though one is "among one's own", so to speak. 

 

If I actually use any of these bits, and how, I do not know at this point. But as I write above, I need to know how I should refer to you in case I wind up using any of this. But, if you would like, I can contact you at a later point - before finishing and publishing my thesis - if I want to refer directly to any of your stuff and show you in what way I am thinking of using it, so you can tell me whether you think it is OK or not?

 

 

/Quote

 

So the communication, as I read it is privileged, in the sense that the writer

is telling me what I can do, but in a way limiting my normal rights as a human

being, so demeaning in a way too...

 

Copyright and CopyLeft would give an audience certain rights,

to quote small segments of stuff published,

but for Creative Commons Share and Share Alike With Attribution,

Non Commercial, Non Derivative Version SomethingOrOther around V3

would mean, to me, that you could publish significant parts of this

PBWorks, in it's exact form, if you gave attribution, in the form of

"Jerry W." and where it came from "NoVAPeers.PBWorks.com"

and the former student in me and geek says a weblink

to the source pages, like LabRat101Circa2012

for this page...  Even if I move pages around, which I need

to do, the FrontPage and/or GeekingOutWithRaspberryPi2012

was crashing Android  based web browsers and contacting

PBWorks.com produced less than satisfactory results,

I'm education and not paying for this site anymore,

despite my data, changes, etc, a normal wiki type

thing are in purgatory, I have to pay to get the early

source data, I can download, for free the top level

current pages, but could not recreate the timeline

that this wiki started as, or how a page is formed,

starting say with the NewPageTemplate

correct the dates on # of visitors, and remove

form text, and add Intro, then add some Body,

later put in a link in the top item, for the page

created, have to save to do that first,

as link doesn't show up on the right hand column

first, until Save, not Save and Continue, IIRC,

and then go back and fix typos and reread

it possibly clarifying and/or fact checking

(Abe Lincoln Cannot Tell a Lie, well it's more

George Washington, and the Cherry Tree,

but live and learn, Honest Abe is one thing,

Bye George another...)

 

So above is some of my writing process,

the mechanics of it, the other stuff is

well, artistic, and Artistic License is

basically steal big... Impersonating or

largely copying would be a derivative

work, publishing to do a thesis, is making

money, likely in a career, so if someone becomes

famous on my work, that would not be part of the

license, IMO...

 

Somethings I would want to do,

make this available on different wiki software,

while PBWiki.com and PBWorks.com have

been hospitable, Semantic Web is more

along the lines of what I want, and Open Source

freely available source code to this software

that I've been using is another.  I need to

programatically change the structure of this

data, to fit the tool, FrontPage is larger

than 100K bytes so it takes way too long

for pages to load...  The timeline of

pages (which pages were created first,

in what order, what gaps in between, etc)

and how pages change over time,

how many were spell checked,

which ones don't have # Visitors or

NewPageTemplate structure, etc...

 

So, you all see, I can LabRat myself,

in even harmful ways, that constant thrashing

of "Why haven't I done, X,Y,Z", drives the depression

why haven't I done more with RaspberryPi?

I can't read the monitor, the photos of the screen

shots were not that bad photography, the characters

are very unreadable, I physically get sick when looking

at some stuff like OpenStreetMap graphics,

which is probably an Autistic characteristic,

most would just say lousy graphics and move on,

I can't look at it for any length of time,

without feeling bad....

 

I need HDMI output capability, to use RPi,

more fully.  I need a USB keyboard that allows

the SD cards to boot well.  I need a hard case

to carry it around with me without crushing the

development board.  I need full access to

the PBWorks data for my own writings,

but I'm not likely to put a donations button

on this website as some do to make it happen...

These writings were offered freely,

and I intend to keep it that way,

I'm not paid to do this, different rules apply

in certain jurisdictions, say DC for volunteering,

liability limited, say like WVA medical

and even the WMATA Bus Survey stuff

they didn't give cash or coupons or something,

they asked even more personal questions

and wanted to mail a check,

which brings in all sorts of other privacy issues...

 

If someone wants you to sign something,

get and keep a copy of it, an agreement may

not be legal if they don't offer it to you,

IANAL, I'm Not A Lawyer, but how can

you be bound to a contract if you don't have 

a copy of the contract?  That is common sense,

even though Common Sense Isn't That Common

(tm) something I've said for a long time,

and other phrases that would characterize

my work/ er. volunteering/ writing style,

this is work, it is difficult and time consuming

doing all of these 500+ pages, formatting

(even slightly) and putting them up for people

to see...  Thinking up what to write about,

how to say it, taking the crap for what I've

written, people are reading this, some

give feedback, usually joking on the mistakes

typos, etc, photocopy the page and mark it up

in red or other colored ink, and maybe I go

back over and fix it...  Not like a graded

English paper, I'll give it a C- because you

can't dance to it, sort of stuff <grin>...

 

The Discussion section is really intended

for that, other people's views, Comments

require access to the PBWorks.com wiki,

I've given out access to a lot of people,

most didn't ask for it, and only a handful

have even bothered to login and use it,

(bless you), some misused it, most I've

withdrawn access as leaving accounts

open that aren't being used don't make sense,

so you've been cut off, and can't help

if I die, saying What A Prick I Really Am

ala House, MD finale...

 

 

Conclusion

 

Summary of experience or similar

 

Don't be a LabRat, it's not respectful,

they are making money off of you somehow,

even if for career only, publishing stuff

about you, usually written in jargon you

won't even understand, get and read your

own medical records if you want to know

stuff like that, correct the inaccuracies in

it, push the HIPAA type protections where

they exist, You Can Add To Your Record,

but not delete, / expunge stuff, someone

says you are Borderline, and well it might

stick with you, I'm a difficult person to deal

with at times, but I am not "Impossible"

as housing would assume, you kill birds,

take a month to put a screen in the grill,

answer a cell phone in my residence,

and I'm supposed to thank you for

treating me like shit?  Get Real...

 

 

Discussion

 

A place for feedback on the page presented

 

Would you grant permission to be a subject in an experiment

or be written about when you don't even know the name of the

department head, or what Human Subjects review this

or that experiment has gone under?

 

Don't sign stuff you don't understand...

 

Have someone else look it over, someone trusted,

if you have that in your life

 

Get a Copy of any agreements, even if it's a blank

of the form, if they deny that, just walk away,

it's probably illegal and immoral to be subjected

to stuff like that...

 

Have your rights explained in terms you understand,

and if they are ridiculing, do something about it,

just because they have a figurative lab coat,

doesn't make them moral, ethical or even

kind...  Degrees are the same, if MDs

want rights to use your works, even after

you are dead, you might be dead because

of what they do too...

 

See FortheLoveofScottbyJoHamilton2012

for the arrogance and uncaring even medical

people can do to human beings...

 

And just about all the other injustices I've

been through based on trying to help

people like me, listed up here on this site...

Following Federal and State and Local Funding

Advocacy for people with MH and other Disabilities...

 

Oh, and Google is BigBrother, not Like Big Brother,

(tm)...

 

 

Page History

 

20120603 Jerry

• Jerry created this page to ...

 

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