Re: Multi-rant

August 6, 2003

DeGraf wrote:

> It's not just people in Tuscon. The Internet has taught me that it's

> humanity in general that is a waste of space. I already believed it

> for the most part before now, but used to think that there was

> perhaps 10% of the population that was worthy of notice. I now

> realize that it's a whole lot closer to .000000001% and I even wonder

> about those people once in a while. :-p

I don't know what to think or do. I wonder how I am supposed to find

the strength to wish to live on in this horrible world. I am not

unhappy or overtly depressed and yet I don't want to exist right now. I

am too tired to do anything but not tired enough to sleep. Sleep would

be a respite, and I can't have any respite. The whole world demands

that I have huge amounts of money and I never will.

Sometimes it is the simple minor things that make me think it is all

futile. Most people would not be incapacitated by the rule that says

you have to get your eyes examined once a year. Sometimes I don't have

enough rebelliousness to mentally wage war against the stupidity of it

all. I am sitting here after having read some pretty damned disturbing

things on Advo, and I don't even have my sense of righteous

indignation. I just have this sense that there is no point. I don't

know why I should fight to make the world a better place when I hate it

so. I know I can tilt at windmills and maybe make some minor

difference, but it will not be utopia, ever, no matter what. And no

matter what happens, I will live out my life in grinding poverty and

never being able to afford what most take for granted.

Every time a little thing comes up, something that a minor application

of money will fix, I will be completely incapacitated. This will not

change. The government won't let me supplement my income with part time

work; if I get a job making $400 a month, the government will take $330

of it. The only reason they don't take all of it is that some of my

income is not SSI, it's disability, on my mother's record. People on

just SSI would have all but $20 taken if they tried to work to

supplement their income. If I am going to live on SSI, they are going

to make damn sure that it is a terrible existence. They probably could

not live on four times what I get in a month.

For the most part, I am content on my pittance, probably because I have

never seen what it is like to be any other way. I have been poor my

whole life. So for me, an income even this small seems like it is

decent money. Not enough to live well, but enough to live. That is

better than I ever did trying to support myself, which never worked. I

have more stability now than I ever have... I have not had to fear

homelessness for over a year now. Most of the time, I feel pretty

lucky. But then something like this comes up, and it strikes me that

the rules that torment me are designed by and for NTs of the upper

middle class. That's how capitalism works. Capitalism does not care

about people's needs. Capitalism is about extracting the most money

possible from the populace. The people that sell the services that I am

required by law to have (laws, by the way, written by legislators that

are rich beyond avarice by my standards) don't care if they are asking

me to pay 5000% of my monthly disposable income. Pay it, or you don't

get the service. We don't care if you can't afford it, because most

people can, and they will pay what we ask. Goods and services are

priced according to what the majority can afford... that's many times

what I live on. Many times what I will ever have. And there are

umpteen people that have it worse than I do.

The reality is that this is not all about the eye thing. This could

have happened any other day and it would not throw me so. It's just

that having all of this crap at once just makes me wonder what's in it

for me. I'm in my old depressive thought pattern now. Are the people

that are happy really just delusional? I mean, look at what life is

like on this planet... just look at it, and how can you think that

happiness is anything but a Pollyannish fantasy?

If I could sleep, perhaps I could emerge and be myself again. At the

very least, I could stop the mental hemorrhaging for a few hours. My

frontal lobe is functioning minimally, but I am too exhausted to even

have a real fear response as I described earlier. I am obsessing on a

slight ring I caused today by setting a bleach bottle on the carpet, not

knowing that there was some bleach on the bottom of the jug. Another

problem that will take money to fix. Not my carpet; it belongs to the

scum that own this aparment complex, and who have more money than I can

imagine... and who will make me pay for that ring. I find myself trying

to think of ways to dye the tan ring back to the light brown color of

the rest of the carpet. Then I think that if I continue to live in this

dump until I have been here seven years, the carpet will be worn out

anyway, and then I can leave.

I hate that every apartment is carpeted. Plain old cheap vinyl tile

would be much easier to care for. It certainly would cause less of a

bill when I move out. If I ever am freed from the hell of apartments, I

think I will have the cheapest tile I can find in every room. Cheap is

okay as long as it is MINE. I am so sick of being told how to live, who

I can have as a guest and for how long, when I must allow invasions by

the manager or her minions, et cetera. The manager here tells me I have

to kick out my friend in ten days. She has nowhere to go and is

horribly depressed. She has zero income... food stamps only. She will

have to live in her car. No money for gas, no money for personal items,

no money to buy food that is ready to eat (another rule... food stamps

cover unprepared food only; they assume that the recipient will have a

place to prepare that food.)

I'm supposed to kick her out because the property management corporation

has a rule against having guests for more than 14 days per three

months. They get to decide what guests I can have and for how long. I

get to decide nothing. More rules designed by and for people in the

middle class. I bet none of those fat cats have ever had a friend that

was homeless and fighting depression daily for her life. She is barely

holding on... after suffering so many disappointments in the social

security system that is " there when you need us, " she is not thriving.

Well, I am not going to tell my friend to go be homeless because of some

rule. And I may be kicked out because of that. It's the rule, you

know. Rules, rules, rules. Politicians and corporate committee members

are smarter than the rest of us; they know what is best, so they get to

make the rules, and those rules should be enforced without any concern

that the unintended consequences are worse than what the rule was

supposed to prevent. Peons like me should know our place; ours is not

to wonder why... ours is just to do or die. And they really don't care

which of those it is.

August 6, 2003

> Sometimes it is the simple minor things that make me think it is all

> futile. Most people would not be incapacitated by the rule that says

> you have to get your eyes examined once a year. Sometimes I don't have

> enough rebelliousness to mentally wage war against the stupidity of it

> all. I am sitting here after having read some pretty damned disturbing

> things on Advo, and I don't even have my sense of righteous

> indignation. I just have this sense that there is no point. I don't

> know why I should fight to make the world a better place when I hate it

> so. I know I can tilt at windmills and maybe make some minor

> difference, but it will not be utopia, ever, no matter what. And no

> matter what happens, I will live out my life in grinding poverty and

> never being able to afford what most take for granted.

It sounds potentially like burnout.

I have felt like that before.

> Every time a little thing comes up, something that a minor application

> of money will fix, I will be completely incapacitated. This will not

> change. The government won't let me supplement my income with part time

> work; if I get a job making $400 a month, the government will take $330

> of it. The only reason they don't take all of it is that some of my

> income is not SSI, it's disability, on my mother's record. People on

> just SSI would have all but $20 taken if they tried to work to

> supplement their income. If I am going to live on SSI, they are going

> to make damn sure that it is a terrible existence. They probably could

> not live on four times what I get in a month.

I have a question, if you don't mind:

When you say it's " on your mother's record, " is this Disabled Adult

Child benefits?

My father is retiring soon. He was told that I need to file for

Disabled Adult Child benefits instead of SSI. I have *no clue* what is

happening, what the changes are in Medicaid, whether I'll get Medicaid,

Medicare, or Medicaid and Medicare, whether there are any major pitfalls

to this situation, whether I'll be allowed low-income housing, and a lot

of other things.

The SSA website has been non-helpful, as has an actual visit to the

SSA. (I did learn that my record apparently now states that I'm " very

autistic. " Weird.) The people at the SSA told me a bunch of mutually

contradictory ideas and then, when I asked for this in written-down

form, gave me a printout of a page that I'd already read.

Then they told me that I won't know until I file. (Which is patently

unfair. They are telling my father about retirement benefits before he

files, to prepare him. They had *tons* of pamphlets about SSI and

different aspects of SSI before I filed for that. Why do they have none

of this literature for Disabled Adult Child benefits?)

I have a meeting with my service coordinator from the Regional Center

tomorrow to discuss this, and I hope he knows some answers. Because

it's driving me nuts not knowing what's going to happen when my father

retires.

> The reality is that this is not all about the eye thing. This could

> have happened any other day and it would not throw me so. It's just

> that having all of this crap at once just makes me wonder what's in it

> for me. I'm in my old depressive thought pattern now. Are the people

> that are happy really just delusional? I mean, look at what life is

> like on this planet... just look at it, and how can you think that

> happiness is anything but a Pollyannish fantasy?

I don't think happiness is delusional. In fact, I think that even with

the worst things in the world, depression is somewhat delusional. But I

don't expect to be able to explain that, and I am far from immune to

depression myself.

> If I could sleep, perhaps I could emerge and be myself again.

That's a distinct possibility.

> I hate that every apartment is carpeted. Plain old cheap vinyl tile

> would be much easier to care for.

I agree. I think the fact that I'm having trouble breathing in my

apartment right now is partly because of the stuff that gets caught in

the carpet and similar surfaces. (As soon as I step outside, I breathe

just as much better as taking an inhaler.)

However, there are apartments with tile floors. I have a friend who

lives in a low-income apartment complex with tile floors.

> I am so sick of being told how to live, who

> I can have as a guest and for how long, when I must allow invasions by

> the manager or her minions, et cetera.

I hate both of those things.

> The manager here tells me I have

> to kick out my friend in ten days. She has nowhere to go and is

> horribly depressed. She has zero income... food stamps only. She will

> have to live in her car. No money for gas, no money for personal items,

> no money to buy food that is ready to eat (another rule... food stamps

> cover unprepared food only; they assume that the recipient will have a

> place to prepare that food.)

I don't generally declare my guests. I have had so many aides coming in

and out that apartment management can't tell the difference anymore. I

think they seriously believe that my best friend is really an aide, and

I have done nothing to disillusion them.

> Peons like me should know our place; ours is not

> to wonder why... ours is just to do or die. And they really don't care

> which of those it is.

I really hate that. But I don't know what else to say.

--

" My human's nose ring is not a teething ring. " -The Bad Kitty List

August 7, 2003

In a message dated 8/7/2003 7:31:12 AM Eastern Daylight Time,

ascaris1@... writes:

> And neither should people

> in any other kind of situation where they have custody of others.

> Humans are too inherently abusive and unable to deal with the

> responsibility of power to be trusted with it.

Yes, I liked your post, yes. I was in special school, yes, where abuse began

and in hospital after, yes where abuse continued. I am in feardom of peoples

until today, and nightmares I get of peoples taking me away again, yes.

Juli ASD mother to Nicollette Rett Syndrome w/autism

August 7, 2003

Hi All,

This SSI or SSA is all very good but wouldn't you of rather of had

the help that my friends Son Arek did and be able to fit in the

workplace. Ok we will never be accepted fully as such, but not all

NT people are bad.

What I am trying to say as someone who had to go on benefit myself I

found my self esteem and self worth go down the toilet every day I

had to spend in this house. I became agrophobic and paranoid and

very bitter.

The so called Psychiatrist were of little help as they can only teach

you copying mechanism from when you are a child. It appears that

anything after that and you just have to get on with it. One

Psychiatric Nurse said just that.

One Psychiatric Nurse that I saw was reasonably helpful but only when

it pertained to sexual abuse as a child. But really they all came to

the same conclusion when it came to AS. The conclusion was that I

already had taught myself most if not all of the different ways to

fit in to Society. So all they could really do was perscribe me some

happy pills and send me on my way. The Mental Health Authorities do

not appear to have enough resources especially in the UK to do

anything else.

So at the end of the day it all boils down to what you want out of

life. I envisaged due to past experience me being on Disability

Benefit for the rest of my days. But its not fair that has to

work to support me. Therefore I feel it is my duty to try and at

least get another job. I know I will never fit in with NT people,

god knows finds it hard and she only has traits. But I do

think that it would be worth my while trying, even for one last time.

Steve

August 7, 2003

Chemer wrote:

> This SSI or SSA is all very good but wouldn't you of rather of had

> the help that my friends Son Arek did and be able to fit in the

> workplace.

No, not for me personally. I have never had any ambition with regard to

supporting myself, working, or acting like an adult. I still have

trouble accepting that I am supposed to be an adult... I am amazed that

there are doctors, lawyers, and others with real jobs my age. I still

have a sense that I am not mature enough to work at Burger King. I'm

still a child, really. I feel no more compunction to support myself

than an average ten year old. The very idea of it boggles my mind. And

when I am expected to do so under threat of homelessness, it really

scares me.

> Ok we will never be accepted fully as such, but not all

> NT people are bad.

I am aware of that. There are several good NTs on the AutAdvo list. My

parents and my sole sibling are NTs.

> What I am trying to say as someone who had to go on benefit myself I

> found my self esteem and self worth go down the toilet every day I

> had to spend in this house. I became agrophobic and paranoid and

> very bitter.

What do you mean by 'every day I had to spend in this house'? What

house were you in before you got benefits?

> The so called Psychiatrist were of little help as they can only teach

> you copying mechanism

I like tracing

> from when you are a child. It appears that

> anything after that and you just have to get on with it. One

> Psychiatric Nurse said just that.

If it were that simple, there would not be psychiatric nurses.

> One Psychiatric Nurse that I saw was reasonably helpful but only when

> it pertained to sexual abuse as a child. But really they all came

> to the same conclusion when it came to AS. The conclusion was that I

> already had taught myself most if not all of the different ways to

> fit in to Society.

Was this recent enough that they knew what AS was?

> So all they could really do was perscribe me some

> happy pills and send me on my way. The Mental Health Authorities do

> not appear to have enough resources especially in the UK to do

> anything else.

Nor here. The mental health resources have been cut so much that many

hospitals are releasing actively psychotic schizophrenics to make room

for even more psychotic schizophrenics. Given the nightmarish condition

of mental hospitals as reported by every person I know that was in one,

I am not sure what to make of that. Certainly an uncontrolled psychotic

person is a danger to everyone, self included, and that is not good at

all.

August 7, 2003

Hi ,

No, not for me personally. I have never had any ambition with regard

to

supporting myself, working, or acting like an adult. I still have

trouble accepting that I am supposed to be an adult... I am amazed

that

there are doctors, lawyers, and others with real jobs my age. I

still

have a sense that I am not mature enough to work at Burger King. I'm

still a child, really. I feel no more compunction to support myself

than an average ten year old. The very idea of it boggles my mind.

And

when I am expected to do so under threat of homelessness, it really

scares me.

I think thats terriable, but I can understand. You do have to be of

a certain maturity to do any job be it grocery or accounts. I myself

was not mature enough in 1997 and that is why I found myself bullied

out of the work place by ignorant people. I think in time I have

finally elevated enough to maybe consider going back now. After all

if I don't then the bullies in my last job would of won easily.

As for being stuck in this house well I lived with my Parents for

quite a few years. I was lucky however to of met and finally

married her in 2001.

I would like to say that my treatment was in the past when people did

not know about AS. But in actual fact some of my treatment was as

recent as 2002. They still are giving me the same crap about Anti

Depresants. I hate the tablets and have made it my duty to never

think once about taking them. Seroxat and Prozac were the worst and

others followed. When are they going to realise that AS can't be

cured by Anti Depressants and these just mask the problem and numb

the mind.

Steve

August 7, 2003

Chemer wrote:

> When are they going to realise that AS can't be

> cured by Anti Depressants and these just mask the problem and numb

> the mind.

Never, I would guess, and hope. My mind is anything but numb; it was a

lot more numb six years ago before I was on them. They gave me my life

back. I was severely depressed and suicidal before I started Zoloft in

1997, as I had been for the past seven years. I was getting

progressively worse, and essentially was in a holding pattern, waiting

to screw up the courage to do what I knew had to be done, and Zoloft put

a stop to that in two weeks. In a month, the depression was gone.

In addition, I doubt anyone that has been around me to any degree would

say that my AS/autistic traits are masked. The people at the plasma

center that busted my chops for rocking in the waiting room didn't think

they were masked. The only differences are that I am not depressed,

that I have dry mouth a lot of the time, and that I have really vivid

dreams. My mind is not numb in any way.

Antidepressants saved my life, and they did it with minimal side effects

and with amazing speed. They may not work for you, but that does not

mean they mask or numb anything for many people that take them. I know

a lot of people that have seen spectacular results with them, and I know

some that have bad reactions to them. Most of the time, people that

react badly to one or two will not have the same bad reaction to all of

them. It is possible that they won't work; a lot of depressives find

them to be ineffective, but it is not accurate to shun the entire genre

of medication. They do work for a lot of us.

August 7, 2003

Chemer danced around singing:

>This SSI or SSA is all very good but wouldn't you of rather of had

>the help that my friends Son Arek did and be able to fit in the

>workplace.

No.

I have seen what " fitting in " has done to one autistic. Perhaps it looks

great when they're kids, but a few decades later and the exhaustion as well

as a lifetime of being told his/her natural state is too monstrous to be

displayed around other people has set in -- ultimately turning what was

once a vibrant human being into a lifeless, depressive, exhausted, suicidal

shell. Those people can still " fit in " enough to work, but I'd rather die

penniless on SSI than be one of them.

Also, I have found that I can make far more meaningful contributions to

society if I am able to do it in a way compatible with my autism. I do not

consider just clocking in, sitting doing a standard job, then going home

every day a contribution to society -- I actually wonder what the point of

even being alive is under those

circumstances. Disabled-and-staying-at-home-on-SSI people that educate

others, volunteer, or make other non-monetary contributions that truly

affect the lives of others, whether human or otherwise -- *they* are the

ones in my mind that make the *real* contributions, whose existence

matters. I would rather be one of them, knowing my existence has made a

difference for people, than merely be able to say I got a nice bonus for

being a good little automaton at work.

>I envisaged due to past experience me being on Disability

>Benefit for the rest of my days. But its not fair that has to

>work to support me. Therefore I feel it is my duty to try and at

>least get another job.

Two points here that are very important.

One is that to my knowledge, somebody on SSI is not allowed to rely on

anybody else financially -- so nobody works to support us if we're on

it. (In fact, as far as I know, we can't get SSI if we even have a legally

declared partner capable of supporting us in the first place.) So your

point is in that sense moot in the USA.

Second, obviously I can't speak for your wife, but what matters most to me

is the happiness of my partner. I know that the demands of work typically

clash with his AS, and thus make him miserably stressed-out and

depressed; I find his pain intolerable, and would *gladly* work for the

rest of my life to support him if I could. I can't imagine caring deeply

for a person, let alone being in love with him/her, and not wanting to

ensure the person's comfort. Also, when my partner has to work, he dons an

NT mask, the traces of which take hours/days to fade -- so in essence he

stops being the man I fell in love with, and becomes some scary stranger I

don't want near me. I would certainly say that under such circumstances,

it's *far* more of a burden to put up with the partner working than to

support him!

DeGraf, now going to bed as she is exhausted

http://www.sonic.net/mustang/moggy

August 7, 2003

> This SSI or SSA is all very good but wouldn't you of rather of had

> the help that my friends Son Arek did and be able to fit in the

> workplace. Ok we will never be accepted fully as such, but not all

> NT people are bad.

Hmm. I don't know.

For one thing, I don't think all NT people are bad. My aide is NT and

she is a wonderful person, very interesting and very respectful, more

interesting to me than most people I know, autistic or NT. (I do think

that all people are interesting, but I take specific personal interest

in some people more readily than others. This one is fascinating.)

As far as fitting into the workplace goes, I don't think there's such a

beast. I believe fully in access to real employment and support

expansion of disability rights laws to prevent discrimination in the

workplace, and I believe fully in teaching people to deal with the

world. So those things have nothing to do with why I get SSI.

But there's far more to the workplace for me than fitting in with the

NTs. Every single task of daily living is difficult to me. I've worked

pretty hard to get to a point where I'm not constantly out of food or

the ability to do some other essential task.

In some ways I'm a pragmatist -- do I take a job and lose it because in

a few days I'll be unable to keep up with even basic tasks and end up

losing sleep and food and water because I literally can't move (and then

in that state be unable to apply for anything), or do I get SSI and

services and an apartment of my own and stand half a chance of surviving

and maybe even doing more than surviving? The choice really isn't all

that hard.

I have nothing against people who go into the workplace. To each their

own. But without SSI I'd probably be on the streets, not in the

workplace, and even with a very accessible job there really isn't a lot

I could handle. I can barely handle daily living.

> What I am trying to say as someone who had to go on benefit myself I

> found my self esteem and self worth go down the toilet every day I

> had to spend in this house. I became agrophobic and paranoid and

> very bitter.

Interesting.

I found the process of *applying* for benefits to be rather

self-esteem-wrecking (who wants to go into an office and tell people all

their faults in excruciating detail?), but I haven't found the fact that

I *am* on benefits all that problematic. I had expected to go to

university, get a job, and do all sorts of other things, but life can be

weird that way. I like my life now.

> So at the end of the day it all boils down to what you want out of

> life.

Probably.

I want to do the best I can in whatever situation I'm in. I don't have

a particular prejudice one way or the other toward SSI or work. I just

don't find work very feasible, and find the minimal amount of non-paid

work I do while on SSI much more useful and rewarding at the moment than

what I could probably be doing if I worked.

If I did work, I think I'd prefer physical labor of some kind (that was

my favorite when I had stamina), but I currently lack the stamina for

that, and even that back then required a lot of breaks to zone out and

recover. I seem to spend a whole lot of my time zoning out and

recovering or preparing, one or the other or both. Seems to be

essential. Interrupting it is bad news, and a work day definitely

interrupts it.

If I am not capable of paid work at the moment (and don't judge it one

of those things where I could pull a " reasonable accomodation " fight off

and make it work), then I basically don't see it as anything to tear my

hair out over as long as there's some other means of support.

--

" If a cat does something, we call it instinct; if we do the same thing,

for the same reason, we call it intelligence. " -Will Cuppy

August 7, 2003

> Nor here. The mental health resources have been cut so much that many

> hospitals are releasing actively psychotic schizophrenics to make room

> for even more psychotic schizophrenics. Given the nightmarish condition

> of mental hospitals as reported by every person I know that was in one,

> I am not sure what to make of that.

That there should be a third choice besides abuse and neglect.

> Certainly an uncontrolled psychotic

> person is a danger to everyone, self included, and that is not good at

> all.

Actually, an " uncontrolled psychotic person " is a person whose mind may

be forming conclusions in ways that most people's minds don't form

conclusions, who may speak in ways that do not make sense, and who may

be hallucinating.

Whether or not they are dangerous to anyone, including themselves, is a

completely separate matter. I have known several people in psych wards

who were not a danger to *anyone*, but who certainly said and did

bizarre things by normal standards. There are of course also people who

are dangerous, but simply the words " uncontrolled " and " psychotic " are

not sufficient to point to that conclusion immediately.

I am not naive enough to think that there is an easy solution to the MH

system, but certainly branding a class of people as dangerous

automatically by label is not the way to go.

You might find the following article interesting:

http://www.power2u.org/recovery/confessions.html

I've got a quote from it on my wall at the moment, and it does have some

thoughts on this matter.

--

" I have a pair of Wade's goulashes you can borrow. " - Boyd

August 7, 2003

>Chemer danced around singing:

>>This SSI or SSA is all very good but wouldn't you of rather of had

>>the help that my friends Son Arek did and be able to fit in the

>>workplace.

>

>No.

>

Here we have Incapacity Benefit that is not means tested and effected

by a partners wages. I speak from experience of the UK Laws.

>I have seen what " fitting in " has done to one autistic. Perhaps it

>looks

>great when they're kids, but a few decades later and the exhaustion

>as well

>as a lifetime of being told his/her natural state is too monstrous

>to be

>displayed around other people has set in -- ultimately turning what

>was

>once a vibrant human being into a lifeless, depressive, exhausted,

>suicidal

>shell.

I have given up in trying to be myself. I have been beaten

up, taunted and mocked by people at College and at work. Its been

one uphill battle trying to convince the Mental Health Authorities

that I needed help. Only to be fobbed off with happy pills and

stupid promises. Teachers have also mocked me for doing the work but

not Socialising as much as others. I got good grades but they had a

go at me for not helping others. I did not mind helping others, but

I did mine when they wanted the answers to the work and copied. What

is really annoying that many of these NT people have good jobs now

and yet half of them just copied off each other.

College was all about group work. The more I was myself the more I

got mocked. The endless nights I worried about going back and facing

another day. Also going back to college at 24 was a bad idea when

the only full time College Work was to rough it with 18 year olds.

Well they were 18 going on 8. They even threw paper at each other,

you know the kind.

Those people can still " fit in " enough to work, but I'd

>rather die

>penniless on SSI than be one of them.

I myself just feel so upset when tries her best and does all

the worrying and I am still here. I have amazing computer skills and

have taught myself a multitude of trades, but its still no good. I

sport a degree in Computer Science but its still the same. I do

however make sure she has a hot meal on the table and that I keep the

place tidy and have a cup of tea for her when she gets back. But I

know others feel I am just sponging off the state. My family are

very supportive but I have certain Aunties and Uncles that still look

down their nose at me.

>Also, I have found that I can make far more meaningful contributions

>to

>society if I am able to do it in a way compatible with my autism. I

>do not

>consider just clocking in, sitting doing a standard job, then going

>home

>every day a contribution to society -- I actually wonder what the

>point of

>even being alive is under those

>circumstances.

I must agree. I however feel that the time has come for me to at

least try at do a job again. Its so important. Not just clocking on

and off like you say, but maybe training people in the use of

computers. There are a number of training jobs around here at the

moment as more and more colleges are taking on mature students. You

do not need a Teaching Degree in order to get a place either. You

just have to be a level above what you are Teaching. I have tried a

multitude of jobs and yes I was bullied out of my last one by jealous

women that did not like the fact that I could type faster than them

and that the Boss wanted me to head an important project. I also had

this woman sexually harass me. But I don't think she was interested

it was all about making me feel uncomfy. At the end of the day due

to extreme stress I finally broke down. But if I never go back to

work they will of won.

Disabled-and-staying-at-home-on-SSI people that

>educate

>others, volunteer, or make other non-monetary contributions that

>truly

>affect the lives of others, whether human or otherwise -- *they* are

>the

>ones in my mind that make the *real* contributions, whose existence

>matters. I would rather be one of them, knowing my existence has

>made a

>difference for people, than merely be able to say I got a nice bonus

>for

>being a good little automaton at work.

>

I agree but its still that is having to shoulder the burden of

the bills and the roof over our head. I would clean toilets if I

knew that it would contribute. To be honest that job pays around 12

dollars an hour here. The min wage is around 9 dollars an hour.

>>I envisaged due to past experience me being on Disability

>>Benefit for the rest of my days. But its not fair that has

>>to

>>work to support me. Therefore I feel it is my duty to try and at

>>least get another job.

>

>Two points here that are very important.

>

>One is that to my knowledge, somebody on SSI is not allowed to rely

>on

>anybody else financially -- so nobody works to support us if we're

>on

>it. (In fact, as far as I know, we can't get SSI if we even have a

>legally

>declared partner capable of supporting us in the first place.) So

>your

>point is in that sense moot in the USA.

>

>Second, obviously I can't speak for your wife, but what matters most

>to me

>is the happiness of my partner. I know that the demands of work

>typically

>clash with his AS, and thus make him miserably stressed-out and

>depressed; I find his pain intolerable, and would *gladly* work for

>the

>rest of my life to support him if I could. I can't imagine caring

>deeply

>for a person, let alone being in love with him/her, and not wanting

>to

>ensure the person's comfort. Also, when my partner has to work, he

>dons an

>NT mask, the traces of which take hours/days to fade -- so in

>essence he

>stops being the man I fell in love with, and becomes some scary

>stranger I

>don't want near me. I would certainly say that under such

>circumstances,

>it's *far* more of a burden to put up with the partner working than

>to

>support him!

>

Steve

August 7, 2003

wrote:

> > Given the nightmarish condition of mental hospitals as reported by

> > every person I know that was in one, I am not sure what to make of

> > that.

> >

>

> That there should be a third choice besides abuse and neglect.

I don't see that as realistic with the current state of psychiatry. The

shrinks have no idea how the brain works, but they think they have all

the answers. I just read a book about psychiatry, written by an

anthropologist that followed the shrinks around and sort of became part

of their world, and even though the book was critical of many parts of

psychiatry, one thing that amazed me is how easily she swallowed the

part about how psychiatrists can amazingly size up and dx a patient in a

matter of seconds. The book made it sound like that is all any decent

shrink needs.

With as little knowledge as they have, and as much ego, it is hard to

imagine shrinks ever stopping to see what they are doing. Sure, a third

option would be nice, but with hospitals such that they are as a given,

I don't know that minimal use of them is not the best thing.

> > Certainly an uncontrolled psychotic person is a danger to everyone,

> > self included, and that is not good at all.

>

> Actually, an " uncontrolled psychotic person " is a person whose mind

> may be forming conclusions in ways that most people's minds don't

> form conclusions, who may speak in ways that do not make sense, and

> who may be hallucinating.

Hallucinations aside, I would not call that psychosis.

> Whether or not they are dangerous to anyone, including themselves, is

> a completely separate matter. I have known several people in psych

> wards who were not a danger to *anyone*, but who certainly said and

> did bizarre things by normal standards.

I have said and done bizarre things by normal standards, but I have

never been psychotic.

> There are of course also people who are dangerous, but simply the

> words " uncontrolled " and " psychotic " are not sufficient to point to

> that conclusion immediately.

True, and there are dangerous people that are not psychotic in any way

as well.

> I am not naive enough to think that there is an easy solution to the

> MH system, but certainly branding a class of people as dangerous

> automatically by label is not the way to go.

That was not my intent. I oversimplified a bit in that statement; I was

trying to summarize a thought that did not easily lend itself to summary.

> You might find the following article interesting:

>

> http://www.power2u.org/recovery/confessions.html

Nothing in that article was new to me. While I am fortunate enough

never to have had to endure that, I am rather close with two women that

have endured that. I live with one of them, in a platonic way, and the

other one has been my closest friend (despite the fact that we have

never met IRL) and the object of much affection for over a year. Then

there is my former " best " friend Don, who was hospitalized in the late

80s for the crime of being inconvenient to his father (who had just

remarried and wanted to have the house to himself with his new wife)...

I knew him very well, and I saw nothing at all " wrong " with him other

than normal teenage angst when he was locked up. He had been brought

into the ward by the police, in handcuffs, even though he was not a

violent person. When he was discharged (he magically got better when

the insurance ran out), he was terrified of his own shadow, was cutting

himself daily, had become prone to mood swings, and generally very

flighty. The suffering was palpable even to someone as dense as I.

In the period right after that admission, I got to hear a lot of the

nonsense that goes on in that ward. One of the things they said was

that I was a bad influence on Don, and he should never see me again.

Me, a bad influence... never had a drink, or a smoke, or took a drug, to

this day. I never had skipped a class, never had a detention in school,

never hit any person or animal, or done anything illegal, or stayed out

past curfew... in fact, I had no curfew, because I never went out. I

was getting passing grades, talking of plans for college, talking about

my dreams to move to California, and talking of Volkswagen Beetles. We

never talked about anything illegal, immoral, dangerous, or anything

like that.

My offense? I had two books on witchcraft in my room, and when Don saw

them and asked to borrow them, I said yes. That was all. By that same

token, I suppose libraries are bad influences; they have books on

witchcraft too, and they too will loan them to you if you desire. I

never pushed the books on Don.

The books were not really mine to loan; they were my grandmother's, but

I knew I could trust Don. However, I could not trust the hospital

people, who destroyed them without asking whose they were.

At one point a few weeks after his release, Don took me to the ward

where he had been held. There was a nurse at a desk right at the

juvenile psych ward entrance, and to her left was The Door. It was

heavy and wooden, with an electromagnetic locking mechanism, and a big

sign that said " Elopement precaution " on it. He asked the nurse if he

could go give this girl he knew a present for her birthday, and after

she examined it, she buzzed him in (with a staff member waiting inside

the door, of course). After the door closed with a click, I looked into

the small, wire-reinforced window in the heavy door. The nurses'

station was just inside the door to the left, with a corridor leading

leftward behind that, and another that extended straight from the door

through which I looked. There was a bench on the right side of the

corridor, where Don's friend sat as he talked. She was a slight and

very vulnerable looking girl. This was it; this was the place where my

friend had been tortured. And there was someone he cared about that was

still in there. I was horrified. I began to think that I was a lot

less normal than Don; I realized that my parents could have me locked up

there anytime they wished. There but for the grace of God go I. I

began to have a semi-panic response; I knew I was much more fragile than

Don, and I would crumble if I was treated as he was.

I was glad to leave that place. I imagine everyone that has been there

thinks so. I got to leave; I had that luxury, not because I was any

different than Don, maybe not any different than the unnamed girl he was

there to visit. I was just in a better circumstance.

I had recurring bouts of fear of being hospitalized for years after

seeing that. I began to imagine myself being in a place like that,

envisioning different things... trying to find a way to escape... trying

to keep 'me' as it was obvious that they had worked hard to destroy

Don's 'me.' I had no idea what the name of my diagnosis was then, but I

did know that I was not normal, and if Don could be locked up, so could

I. I was very afraid of that at times, something I have never told

anyone about until right now. I had been taken to the neurologist and

hooked up to the EEG, and diagnosed as SDHD without even seeing the

doctor that diagnosed me (he did it purely on my mother's words,

something that I was patently aware of, given how easily the staff had

believed Don's father's lies). My mother also had me seeing a

psychologist. Yes, I knew that there was something " wrong " with me, and

I knew that it was a lot more than Don had. Fortunately, my mother

chose to stop there.

Shortly after I saw the hospital in which Don was incarcerated, he

attended another of his requisite biweekly group sessions. During that

session, he passed a note to a girl he had met on the ward (and briefly

had a relationship with), to the effect that he was still cutting... she

showed it to the group leader (thinking it was the compassionate thing

to do; she adored him), and when the group leader reported the note to

Don's father and found out that there was a new insurance policy in

effect, he admitted Don again. Don was not totally upset by this... he

was terrified out of the institutional environment. He said that they

brainwashed him to think that all of the problems with the world, with

his life, were not real, and he had a very naive view of things when he

was freed. He soon discovered that he was not prepared to deal with

reality anymore, not now that they had destroyed his defenses and left

him as a child in a world of adolescent bullies-- I remember them well;

they are among the cruelest of people. Reality was just as harsh and

brutal as he had thought, and now he was expecting shangri-la. He told

me sometimes that he wanted to go back, where reality stopped at the big

wooden door. Other times, he said that he never wanted to go back.

Like the first time Don was admitted to that private ward, I did not

hear from him much. He was not often allowed to make calls... that,

like the threat and use of of restraints, was one of the primary means

of controlling the inmates (this hospital having a mostly psychodynamic

approach). I knew he was deteriorating, though.

When the insurance ran out again, he was too damaged by the " treatment "

to warrant release, and they committed him to the state ward at another

hospital (the infamous " St. Joes " ward). He was in there rotting for

quite a while before his passive-aggressive mother figured out what was

going on and started rattling some cages and refuting the stories her

ex-husband had told to get her son locked up. He was released shortly

thereafter, and he lived with her thereafter.

Next came the betrayal by the school. Convinced that he was crazy even

though there had been no disciplinary action against him after his

release, the school administrators decided it was better if he go to the

" locked " high school, called Central, where all of the juvenile

delinquents go. He did not want to go to that jail (and it essentially

was a jail), having done nothing but being inconvenient to his father,

so he dropped out and had his GED before I even graduated (he was in my

class).

The total time in the hospital was under a year, if I recall, much less

than many people on this list, but the effects were obvious. My

formerly soft-spoken, gentle friend turned into a jerk. He became cold

and hurtful, lashing out in anger at anyone around him... friend, foe,

acquaintance, stranger. He began to take particular pleasure in

torturing people that were different-- different as he had been just a

short time prior. He became manipulative and dishonest. He told me

that he was tired of being shit on, so now he would be doing the

shitting. He became a major bully, full of rage and hatred. The friend

that I used to know had been destroyed, and the world was left with one

less kind soul, and one more abuser. I terminated the friendship.

That was my first experience with mental hospitals. That was, as such,

my impression of mental hospitals when I became active on autism lists,

and got to know people that had it worse than Don. Don had not been

drugged to the degree that these other people had. Don never had

electroconvulsive therapy. Don hadn't been bound in restraints that

much. But he had been thoroughly mindfucked, stripped of any shred of

dignity, and that was a common thread. I began to really admire people

who made it through many years of this stuff and kept more of their

humanity than Don had. I knew Don was a good guy beforehand; he was my

best friend, edging out close competitor Shane (probable AS, deceased,

as described in the article on my site). And given that these tales of

hospital torture could very easily have been mine, had I different

parents, I felt tremendous empathy with those former mental patients.

In the years I have been active in the autistic community, I have heard

from many people that have had the hospital experience. Some I read of

on email lists; some I spoke to on the phone, some I read about in

books, and some I read about on their web pages. The things they said

were appalling and sickening. Most people think that the days of Bedlam

have been a thing of the past for decades, but I think everyone here

knows differently. People are being tortured daily now... in some

countries, this is happening every bit as much now as it was in the US

in the 80s (by that, I mean monster years-long admissions; at many

hospitals in the US now, the average admission is down to eight days,

mostly because of the cost and managed care). There is no oversight,

and mental patients have no credibility to report their own abuse... but

I need not tell you that. I think every mental hospital on earth should

have hidden cameras installed in every room, and have the staff be

unaware of it until the police arrive. If people knew what was

happening, or, rather, if people were willing to believe what was

happening, it would not be so easy to torture people and call yourself a

person who cares for others. Scrutiny of the police has made many of

them clean up their acts. I'm all for people videotaping every police

action, a la Rodney King. They should not be doing anything that they

would not be willing to have on COPS, ever. And neither should people

in any other kind of situation where they have custody of others.

Humans are too inherently abusive and unable to deal with the

responsibility of power to be trusted with it.

August 7, 2003

--- Chemer wrote:

> Hi All,

>

> This SSI or SSA is all very good but wouldn't you of

> rather of had

> the help that my friends Son Arek did and be able to

> fit in the

> workplace. Ok we will never be accepted fully as

> such, but not all

> NT people are bad.

>

> What I am trying to say as someone who had to go on

> benefit myself I

> found my self esteem and self worth go down the

> toilet every day I

> had to spend in this house. I became agrophobic and

> paranoid and

> very bitter.

>

-------------My house is my haven, refuge, sanctuary,

the only place where I can relax 100%. If I could

find some work to do from home, that would be ideal.

Nanne

=====

" Let's go get drunk on light again---it has the power to console. " --

Seurat

August 7, 2003

> > > Given the nightmarish condition of mental hospitals as reported by

> > > every person I know that was in one, I am not sure what to make of

> > > that.

> > That there should be a third choice besides abuse and neglect.

> I don't see that as realistic with the current state of psychiatry.

Hence " should " .

> With as little knowledge as they have, and as much ego, it is hard to

> imagine shrinks ever stopping to see what they are doing. Sure, a third

> option would be nice, but with hospitals such that they are as a given,

> I don't know that minimal use of them is not the best thing.

Think about it the way you think about autism, and it'll make more

sense. When you think about option, you don't settle for " what is " , you

go for trying to bring about what could be. The MH system is no

different, and there are large groups of people working just as hard to

replace it and overthrow it as you are around autism-related

discrimination.

> > Actually, an " uncontrolled psychotic person " is a person whose mind

> > may be forming conclusions in ways that most people's minds don't

> > form conclusions, who may speak in ways that do not make sense, and

> > who may be hallucinating.

> Hallucinations aside, I would not call that psychosis.

Psychiatry does, however.

If the conclusions that a person's mind is forming are consistently

skewed in one direction to the point where they think the government is

after them when they're not, or the speech is garbled in certain

specific ways that shrinks interpret as " thought disorder " , that's what

they consider " psychotic. "

> > Whether or not they are dangerous to anyone, including themselves, is

> > a completely separate matter. I have known several people in psych

> > wards who were not a danger to *anyone*, but who certainly said and

> > did bizarre things by normal standards.

> I have said and done bizarre things by normal standards, but I have

> never been psychotic.

I was speaking of people who psychiatry views as psychotic, because of

aforementioned odd beliefs and speech patterns.

I didn't mean tha tall behavior that's odd by normal standards is viewed

that way, but certain specific combinations of it are.

> > There are of course also people who are dangerous, but simply the

> > words " uncontrolled " and " psychotic " are not sufficient to point to

> > that conclusion immediately.

> True, and there are dangerous people that are not psychotic in any way

> as well.

Yes.

> > I am not naive enough to think that there is an easy solution to the

> > MH system, but certainly branding a class of people as dangerous

> > automatically by label is not the way to go.

> That was not my intent. I oversimplified a bit in that statement; I was

> trying to summarize a thought that did not easily lend itself to summary.

Okay.

> > You might find the following article interesting:

> >

> > http://www.power2u.org/recovery/confessions.html

> Nothing in that article was new to me.

<snip>

Are you sure?

You seemed to be responding mostly to the " hospitals are bad " stuff.

She did mention a lot of things about how, say, having one's own

apartment helped people more than mental health housing, and started in

various directions of that nature on ideas that went beyond a two-option

model.

--

" I can tell when my lover has been around the cat too long when she

begins scratching me behind the ears. " -Gail Sausser

August 7, 2003

wrote:

> Are you sure?

>

> You seemed to be responding mostly to the " hospitals are bad " stuff.

>

> She did mention a lot of things about how, say, having one's own

> apartment helped people more than mental health housing, and started

> in various directions of that nature on ideas that went beyond a

> two-option model.

Yes, I got that too. One of the two females I mentioned specifically

has told me that she improved more living in her own place than anything

they did in the hospital. I found that wholly unsurprising-- mental

hospitals don't seem to be conducive to mental health by any stretch of

the imagination.

I read a book called " Mad In America, " which was presented as a history

of treatment for madness (generally schizophrenia, apparently) from 1776

to present. It is noted that psychiatry's record is poor, and the

compassionate treatment by the Quakers, without the torture and locked

doors, produced better results. It was an interesting read, but it

struck me as so slanted as to be a questionable source, but the message

was still there. There are all sorts of options besides locking 'em all

up and near total neglect, leaving many mentally ill people to fend for

themselves on the streets (a very high proportion of the homeless are

supposedly mentally ill).

There is a basic difference in the way you and I look at mental health

care in hospitals. I look at it as a tragic thing that is wrong and

should be fixed. You, if I am getting this correctly, look at it like

we both look at autism-- something that affects us personally, and that

we personally want to have a hand in fixing. I have a personal stake in

the autism thing, and that is why I want to change it. It's not just

that there is injustice happening to autistics; there is injustice

happening to a lot of people, but I picked the one group to which I

belong as my advocacy target. As much as I empathize with people that

have been put into mental hospitals, it is an abstract thing to me. I

don't belong to the group of people that has seen the ugly side of

inpatient psychiatry; you do, and you look at it as such. I have not

" seen the elephant, " as it were. I have not been there, and I view it

as an outsider.

August 8, 2003

>For the most part, I am content on my pittance, probably because I have