Re: Leadership (was: Child abuse)

March 5, 2006

> But it does matter that people care about you specifically and that

> you exist -- in the broader sense of getting those issues addressed

> and those people helped.

I wasn't trying to deny any leadership role I might have in the

autistic community.

I just think that what you said, about caring about me, was kind of a

non-sequitur.

I was talking about the way people relate to political issues and

stuff. People should be caring about whether or not autistic people

are relegated to institutions, and they should be caring about this

whether or not I am around to tell them about it. Because I, and any

other person, was not always around and won't always be around,

certainly don't know everyone who should be involved in this kind of

thing, etc. The issues, however, would still be around if I vanished

off the face of the earth tomorrow, or if you did, or if a lot of us did.

And in that context, " caring about me " seems to miss a point

somewhere. I'm not denying my or anyone else's importance in the

present moment, but the present moment is not all moments and I was

not talking in terms of personalities but in terms of issues.

March 5, 2006

wrote:

>> I wasn't trying to deny any leadership role I might have in the

autistic community.

I just think that what you said, about caring about me, was kind of

a non-sequitur.

I was talking about the way people relate to political issues and

stuff. People should be caring about whether or not autistic people

are relegated to institutions, and they should be caring about this

whether or not I am around to tell them about it. Because I, and any

other person, was not always around and won't always be around,

certainly don't know everyone who should be involved in this kind of

thing, etc. The issues, however, would still be around if I vanished

off the face of the earth tomorrow, or if you did, or if a lot of us

did.

And in that context, " caring about me " seems to miss a point

somewhere. I'm not denying my or anyone else's importance in the

present moment, but the present moment is not all moments and I was

not talking in terms of personalities but in terms of issues. <<

I'm sorry if you thought I was making light of the issues by

bringing personalities into the discussion. That wasn't my

intention.

The problems and issues were there before you, but a lot of people

didn't know about them until you started telling them. That's the

point of " awareness. " People need to be aware there's a problem

before they care about fixing it. But once they're aware, they

still need to know how they can help.

You were talking about not having the energy to do what needed to be

done, for yourself and others. I was trying to say there are people

who would help if they knew what was needed -- more so if you asked

them, because they like and respect you.

I was speaking about specific actions to solve immediate problems,

but that also applies to larger actions necessary to eliminate

systemic problems. Please share any thoughts on what we as groups

or individuals can do to help.

- Debra

March 5, 2006

> I'm sorry if you thought I was making light of the issues by

> bringing personalities into the discussion. That wasn't my

> intention.

I didn't think you were making light of anything, don't worry. I was

just baffled.

> The problems and issues were there before you, but a lot of people

> didn't know about them until you started telling them. That's the

> point of " awareness. " People need to be aware there's a problem

> before they care about fixing it. But once they're aware, they

> still need to know how they can help.

This is confusing to me in some ways.

The reason I knew that a lot of these things -- both things that

happened to me and things that did not -- were problems, was from

listening to other people talk about them. There were many people

talking about them, many more widely published than I am, before I

even began to form the ideas.

This is not a denial of whatever importance I may have at the moment,

but I do wonder why it is that all these people did not hear the

voices of the people who were talking about these things already,

whose work (and sometimes personal support, depending on the person)

encouraged me to talk about similar things.

One thing I do wish, though, was that the autistic community was not

essentially split in half.

I've had the strange experience of being put on both sides, though:

I've been invited to " low-functioning-only " events and I've been

invited to " high-functioning-only " events. I don't like being invited

to either, especially at times when I know I'm the " exception " being

kept around because I'm useful to someone (tokenism *within* the

autistic community? Happens.)

There are a lot of people who could learn a lot from listening to each

other (and on this build a foundation for other things), but it

doesn't happen all that much. By listening I don't mean " uncritically

agreeing with everything someone says " (otherwise I'd be really happy

with Kamran Nazeer right now, and I'm *not* happy with him at all),

but different people do end up having different things to deal with

from society and it's always useful to learn about them.

Radisch is a woman who has proven her ability to type, through

message-passing and such. She only learned in middle age. As a teen,

she was sent to the same institution I was threatened with, and then

sent to a " group home " that was worse (I was just sent straight to a

" group home " that was worse). Her biggest message to people is that

she exists, wants to participate in self-advocacy, and that she's in

danger of being relegated to not communicating because people don't

believe she can. Unlike me, she has no way of typing independently,

and therefore no way of verifying that she is telling the truth. (I

can tell just from her body language, which is " within my type " of

autism somehow and quite familiar, but I know that's not " proof " to

most people.)

Harold is a man who lives in my building. He's diagnosed with

Asperger's (although he didn't talk till he was four), and is

*blatantly* so, but the county insists that he is just " mentally ill " .

He used to have a job but it didn't work out. He's just moved out of

a group home. His mother threatens him that if he isn't " good " he'll

have to go back to the group home. He's lonely, but instead of

getting assistance socializing, his shrink just drugs him and he hates

it because he knows that his loneliness is not chemical in nature.

The combination of drugs he's on has a visible effect on his ability

to do things. He has a lot of strong political and religious views,

but his mother dismisses them as him being " naive " and " easily led "

instead of that he just has very different views than she might. She

treats him like a child and he's in his thirties or forties.

They both have a lot of different things from my life, but I learn

what those things are, and combine them with what I know of other

autistic people in the world, of which there are many. I think about

those things, and I learn about what's going on in the world for a lot

of us. Then I do my best to articulate my own viewpoint on it.

I think that's a lot of what could be done -- to get a foundation of

knowledge and " awareness " on this stuff, you have to find out about a

lot of different people's life experience, even if it's quite

different from yours. Doesn't mean agreeing (couldn't possibly agree

with everyone at once anyway, because believe me people in all

circumstances and all parts of the " spectrum " have different views

even within their categories) but does mean listening.

Also finding out about disability-rights analyses of situations can be

really useful, because they're often quite different from the " common

sense " version. (For instance, the idea that disabled people of

certain sorts are just " non-contributing members of society " has been

ripped apart very well from several angles despite how common it is.)

That of course isn't an active thing, like " Do this in this situation

and it will help. " But right now is a time when I don't know all the

active things that can be done, and I do know that doing the above can

give people a solid foundation in what sorts of things need to be

done. And I don't think there's any real formula to the actual

" action " anyway, it'd be different every time.

(I'm sure there are things to do. I'm also sure I haven't slept in

nearly 24 hours. I hope this post is vaguely on the topic.)

March 6, 2006

>

> > But it does matter that people care about you specifically and

that

> > you exist -- in the broader sense of getting those issues

addressed

> > and those people helped.

>

> I wasn't trying to deny any leadership role I might have in the

> autistic community.

>

> I just think that what you said, about caring about me, was kind

of a

> non-sequitur.

>

I agree, . It happens to me too. I make an impassioned

statement about something and somebody delegitimizes it by saying

something like that. It makes it sound like we are just trying to

get attention.

I don't care what anyone thinks of me. I just want to get

something done. As long as I have my birds and a roof over my head,

the rest of the world can go to hell.

Jerry Newport

March 6, 2006

wrote:

>> This is confusing to me in some ways.

The reason I knew that a lot of these things -- both things that

happened to me and things that did not -- were problems, was from

listening to other people talk about them. There were many people

talking about them, many more widely published than I am, before I

even began to form the ideas.

This is not a denial of whatever importance I may have at the moment,

but I do wonder why it is that all these people did not hear the

voices of the people who were talking about these things already,

whose work (and sometimes personal support, depending on the person)

encouraged me to talk about similar things. <<

People tend to pay attention to what interests them. Thre are so

many worthy causes and one can't be everywhere at once. So there

has to be some reason to care about one cause over any other.

I think it's safe to say that most people know nothing more about

institutions than what they've seen in the movies. (After all, many

are designed for the express purpose of keeping people out of sight

and out of mind.) You've made the problems of institutionalized

people personal (and therefore more pressing) to those who know you.

>> One thing I do wish, though, was that the autistic community was

not essentially split in half.

I've had the strange experience of being put on both sides, though:

I've been invited to " low-functioning-only " events and I've been

invited to " high-functioning-only " events. I don't like being

invited to either, especially at times when I know I'm

the " exception " being kept around because I'm useful to someone

(tokenism *within* the autistic community? Happens.) <<

I agree with you about the split -- and I credit you and

Dawson with raising consciousness on that issue. But you know that

most people still don't get it. There's more work to be done.

I don't think tokenism is so bad if it exposes the majority group to

people and issues they wouldn't otherwise encounter. But, yes, it's

a problem if the token is " used " for some other purpose. (Or if the

token enjoys being the " only " whatever, as sometimes happens.)

>> There are a lot of people who could learn a lot from listening to

each other (and on this build a foundation for other things), but it

doesn't happen all that much. By listening I don't

mean " uncritically agreeing with everything someone says " (otherwise

I'd be really happy with Kamran Nazeer right now, and I'm *not*

happy with him at all), but different people do end up having

different things to deal with from society and it's always useful to

learn about them. <<

Agreed.

>> Radisch is a woman who ...

Harold is a man who ...

They both have a lot of different things from my life, but I learn

what those things are, and combine them with what I know of other

autistic people in the world, of which there are many. I think about

those things, and I learn about what's going on in the world for a

lot of us. Then I do my best to articulate my own viewpoint on it.

I think that's a lot of what could be done -- to get a foundation of

knowledge and " awareness " on this stuff, you have to find out about a

lot of different people's life experience, even if it's quite

different from yours. Doesn't mean agreeing (couldn't possibly agree

with everyone at once anyway, because believe me people in all

circumstances and all parts of the " spectrum " have different views

even within their categories) but does mean listening. <<

I've spent a good deal of my life observing other people and trying

to understand the ways of the world. In my normal everyday life,

however, I really have very little contact with people like those

you've mentioned. I volunteeed to work at a Saturday respite

program for autistic children, in order to learn more about the so-

called low-functioning Autistic. One thing I found was that I

related to the (middle-school age) children and they to me -- more

so than to the NT staff. (I couldn't keep working there, because

licensing issues raised a conflict of interest with my regular

employment.) I wish I could have more experiences like that.

>> Also finding out about disability-rights analyses of situations

can be really useful, because they're often quite different from

the " common sense " version. (For instance, the idea that disabled

people of certain sorts are just " non-contributing members of

society " has been ripped apart very well from several angles despite

how common it is.)

That of course isn't an active thing, like " Do this in this situation

and it will help. " But right now is a time when I don't know all the

active things that can be done, and I do know that doing the above

can give people a solid foundation in what sorts of things need to be

done. And I don't think there's any real formula to the actual

" action " anyway, it'd be different every time.

(I'm sure there are things to do. I'm also sure I haven't slept in

nearly 24 hours. I hope this post is vaguely on the topic.) <<

Then thank you for answering in your sleep-deprived state. Of

course, it's not fair to ask you to immediately map out a course of

action. But if you or anyone here knows of any specific action that

would make life better for individuals such as you've spoken about,

we here might be willing to help.

As to larger issues, we do need a larger plan. Those who have

ideas, but insufficient energy might make use of those with energy

but insufficient ideas. Just somehing to think about in the future.

- Debra

March 6, 2006

Debra wrote:

>As to larger issues, we do need a larger plan. Those who have

>ideas, but insufficient energy might make use of those with energy

>but insufficient ideas. Just somehing to think about in the future.

At Autreat this summer there will be at least an evening discussion

(with direction, not just a conversational ramble) and possibly a

workshop followed by an evening discussion on the topic of how to

educate and mobilize non-autistic " allies " to support autistic

advocacy.

Jane

March 6, 2006

> People tend to pay attention to what interests them. Thre are so

> many worthy causes and one can't be everywhere at once. So there

> has to be some reason to care about one cause over any other.

> I think it's safe to say that most people know nothing more about

> institutions than what they've seen in the movies. (After all,

> many are designed for the express purpose of keeping people out of

> sight and out of mind.) You've made the problems of

> institutionalized people personal (and therefore more pressing) to

> those who know you.

I'm just curious why, for instance, people like Cal Montgomery and Sue

Solursh/ (among others, they're just the ones that spring

to mind immediately) aren't credited with doing the same thing.

> I agree with you about the split -- and I credit you and

> Dawson with raising consciousness on that issue. But you know that

> most people still don't get it. There's more work to be done.

Yeah.

> I don't think tokenism is so bad if it exposes the majority group

> to people and issues they wouldn't otherwise encounter. But, yes,

> it's a problem if the token is " used " for some other purpose. (Or

> if the token enjoys being the " only " whatever, as sometimes

> happens.)

The definition of tokenism to me is the negative version (just pulled

one lazily off Wikipedia here): " Tokenism refers to a policy or

practice of limited inclusion of members of a minority group, usually

creating a false appearance of inclusive practices, intentional or

not. Typical examples in real life and television include minority

races (such as a black character in a mainly white cast, or vice

versa) and women. Classically, this character has some reduced

capacity compared to the other characters. Their difference may be

overemphasized or made exotic. "

Tokenism is likely to *drive off* most members, particularly most

politically aware members, of whatever group, unless there's *nowhere*

else they can think of going, or unless they *really* want to be

wherever it is.

I think there's a danger of groups of autistic people wanting to

appear more inclusive than they are. And I've already experienced the

thing where someone in an autism group points at me and goes " We're

not exclusionary -- *she's* here after all. " And... it's not fun to

be that token example.

It'd be similar to being the only autistic in an all-NT group,

struggling really hard with the way it's set up in ways that would

normally exclude you (but really wanting to be there for whatever

reason, so persevering), and then having them say " We're inclusive of

autistics -- this person's here, after all -- so there's no problem. "

It's much harder work for said group to do things in a way that is not

likely to exclude autistics, because they're not used to doing things

that way. What they end up with is a lot of non-autistic people and a

few autistics who struggle a lot to deal with them (and they act like

that struggle either isn't there or is natural, either way that the

way things are is how they should be essentially).

The key part of that token definition is that it's lip service not

real inclusion.

> I've spent a good deal of my life observing other people and trying

> to understand the ways of the world. In my normal everyday life,

> however, I really have very little contact with people like those

> you've mentioned. I volunteeed to work at a Saturday respite

> program for autistic children, in order to learn more about the so-

> called low-functioning Autistic. One thing I found was that I

> related to the (middle-school age) children and they to me -- more

> so than to the NT staff. (I couldn't keep working there, because

> licensing issues raised a conflict of interest with my regular

> employment.) I wish I could have more experiences like that.

Radisch wrote a chapter in a book called _Sharing Our Wisdom_

that contains presentations by lots of autistic people. Harold is

local to me. But a lot of people like either of them, have published

writing on the Internet if you poke around.

> Then thank you for answering in your sleep-deprived state. Of

> course, it's not fair to ask you to immediately map out a course of

> action. But if you or anyone here knows of any specific action

> that would make life better for individuals such as you've spoken

> about, we here might be willing to help.

I have a friend who is in real trouble. And I don't know how to help

him, and our mutual friend (the only person who has contact with him,

but his mother grabs the phone from our friend and hangs it up if he

calls any of his friends) has been out of contact with me for awhile.

If I ever know anyone who would be *really willing to work* on

assisting someone in San Francisco despite a really scary mother being

involved, and if I can ever get in touch with our mutual friend (who

would be the one to talk to, rather than me, because I'm very far away

right now from both the location and the situation), that would be

really useful.

> As to larger issues, we do need a larger plan. Those who have

> ideas, but insufficient energy might make use of those with energy

> but insufficient ideas. Just somehing to think about in the

> future.

There's a bunch of long-range planning I have to do in some areas

similar to this, so I'll give it some thought. I'm sure others

already have ideas that they're putting into use, though, too.

(Right now a lot of energy is going to working on autistics.org and

getting it functional again.)

March 7, 2006

> (Right now a lot of energy is going to working on autistics.org and

> getting it functional again.)

,

As part of my isp account, i have 150MB of web space, 10mb of mysql

(database) and 2GB of monthly transfer and if i need more, i'm going to

university with the owner of the business.

I can also help with the management but for this session, i'm putting in

about 35 hours of study per week beside classroom meeting so the

management, i'm in vacation for the summer though.

Alain

March 7, 2006

> > (Right now a lot of energy is going to working on autistics.org and

> > getting it functional again.)

> As part of my isp account, i have 150MB of web space, 10mb of mysql

> (database) and 2GB of monthly transfer and if i need more, i'm going

> to university with the owner of the business.

We have (are renting) a server now of our own. We're working on

getting security and scripts working on the server, and then

transferring autistics.org to the server.

March 7, 2006

wrote:

>> I'm just curious why, for instance, people like Cal Montgomery and

Sue Solursh/ (among others, they're just the ones that

spring to mind immediately) aren't credited with doing the same

thing. <<

Because I don't know them. Sometimes it just comes down to that.

>> The definition of tokenism to me is the negative version (just

pulled one lazily off Wikipedia here): " Tokenism refers to a policy

or practice of limited inclusion of members of a minority group,

usually creating a false appearance of inclusive practices,

intentional or not. Typical examples in real life and television

include minority races (such as a black character in a mainly white

cast, or vice versa) and women. Classically, this character has some

reduced capacity compared to the other characters. Their difference

may be overemphasized or made exotic. "

Tokenism is likely to *drive off* most members, particularly most

politically aware members, of whatever group, unless there's *nowhere*

else they can think of going, or unless they *really* want to be

wherever it is. <<

I've been in that situation with a number of other causes. I

eventually give up when I realize I'm not accomplishing anything. My

ex-husband used to take perverse pleasure in punishing people by

remaining where he knew he wasn't wanted. People usually ended up

liking him (at least in a manner of speaking), but they also decided

he was an exception to the group he represented.

We (Autistics) get that all the time. Whoever stands up to represent

the group becomes an exception to the rule.

>> I think there's a danger of groups of autistic people wanting to