Charlotte.Ferris@f5.n382.z1.fidonet.org (Charlotte Ferris) (09/27/90)
Index Number: 10660
...that I'd like to follow-up on are as follows:
I think it would be a great idea to have Peoplenet (or its cousin)
on-line. It probably would take off like wildfire. Just the idea of being
forced to use snail mail is what keeps me from pursuing it. As far as I'm
concerned, snail mail is only good for paying bills.
Another great idea: to share our experiences with and opinions of
independent living centers. I ran one service department for 6+ years here
in Austin's ILC, and the tales I could tell.....also, I think it's high time
we evaluated the position of ILC's in our society. As was asked earlier, are
they serving us? Are we running them? Are we on their boards? And so on.
Just so you'll know where I stand, I came away from that job with a
bitter taste in my mouth.....some of it personal, most of it professional.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!382!5!Charlotte.Ferris
Internet: Charlotte.Ferris@f5.n382.z1.fidonet.orgBill.Higgins@p17.f122.n249.z1.fidonet.org (Bill Higgins) (10/03/90)
Index Number: 10807
Hi Charlotte,
Allow me to quote the letter you mailed on 24-Sep-90
CF> ...that I'd like to follow-up on are as follows: I think it would be a
CF> great idea to have Peoplenet (or its cousin) on-line. It probably
CF> would take off like wildfire. Just the idea of being forced to use
CF> snail mail is what keeps me from pursuing it. As far as I'm concerned,
CF> snail mail is only good for paying bills. Another great idea: to share
CF> our experiences with and opinions of independent living centers. I ran
CF> one service department for 6+ years here in Austin's ILC, and the
CF> tales I could tell.....also, I think it's high time we evaluated the
CF> position of ILC's in our society. As was asked earlier, are they
CF> serving us? Are we running them? Are we on their boards? And so on.
I'm on the board of director for the Independent Living Resource center
here in Kingston Ontario. Our Constitution requires at least 51% of the
boards members have a disability of one sort or another. This has made the
ILRC comsumer controlled from the day it evolved from another organization.
I have been very satisfied with it's performance and the progress it's made
into the community and hope that it will continue to grow with time and
effort.
CF> Just so you'll know where I stand, I came away from that job with a
CF> bitter taste in my mouth.....some of it personal, most of it
CF> professional.
The ILRC gave me my first serious job. I found the experience to have been
of exceptional value in that my job training included a Computer Literacey
Course at the local college covered by the ILRC. This has given me more
personal work experience that what I've had in the past from other things
I've done (this includes a very bad stint in a March of Dimes "plant").
As I just mentioned I had a bad stint at a MoD "plant". To put it rather
plainly I was exploited for their profit. I was supposed to have been
trained there in computers but instead I was sent out to their "plant" and
put to work doing the most menial of tasks such as shredding shirts for
rags and sorting out stuff that people "donated". As far as I'm concerned
I was used as a slave of sorts. What made it more unpleasent was the
caliber of people working there as well, to put it bluntly, I out shined
them all when it came to intellegence. I finally woke up one day and said
'no more' and quit just before lunch. I've never really trusted the social
system totally since then and when I wrote them to complain the effectivly
told me I didn't know what I was talking about and to shut up!
Well that's all for now!! TTFN!!
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!249!122.17!Bill.Higgins
Internet: Bill.Higgins@p17.f122.n249.z1.fidonet.orgCharlotte.Ferris@f5.n382.z1.fidonet.org (Charlotte Ferris) (10/03/90)
Index Number: 10814
Bill, thanks for your reply; it brought several things to mind, which I will
go into briefly now, and if you or anybody wants more discussion on it, I'll
be glad to elaborate my ideas and give feedback on yours, if you desire...
You mentioned that, according to the by-laws (or whatever) that
govern your ILC, 51% of the Board of Directors must have a disability"of one
sort or another"...I think you will find that many ILC's use this pattern as
a model, imitating the first great ILC's in Boston, Berkeley, and (Chicago?
Champagne-Urbana?), as did ours here in Austin. However, what I have
observed is that the power-wielders and decision-makers were often more
interested in fulfilling the letter rather than the spirit of the law in
that many times people were "found" to have a disability and appointed to be
on the Board, when in fact their so-called "disability" was so minor as to
be negligible, i.e. an attention-deficit, or a minor case of asthma, or
hypoglycemia.....in other words, the people in power wanted them on the
board, and their minor problems were played up as disabilities and counted
as part of that 51%. Now I must say that, as a severely-disabled staff
person of some significance in that organization, I did not feel that the
Board represented either mine or my fellow disabled staffers' best interests
or those of the disabled clientele that we were being funded to serve. I
felt they had little or no understanding of severe disability and were not
interested in gaining any......anyway, all this is very dirty water under
the bridge, and all I'm trying to say is that I suspect that the disability
politics of people on the Boards of Directors in these ILC's, whether they
be disabled or no, are sometimes not right-on. That's the way it was here,
and now our organization almost doesn't exist anymore. It sure doesn't have
any credibility in the disabled community here.
Bill, this only scratches the surface. But back to you.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!382!5!Charlotte.Ferris
Internet: Charlotte.Ferris@f5.n382.z1.fidonet.orgBill.Scarborough@f18.n382.z1.fidonet.org (Bill Scarborough) (10/03/90)
Index Number: 10826
Welcome to the conference, Charlotte. I am sure you have found
out already that this is a warm and inviting conference where many
people of different persuasions and classes of disability, etc., discuss
lots of things and get along quite well.
You are quite correct of course about the ILC you worked for.
I (and Mike Rose) noticed that the ILC board was not responsive to
the disability community-- there was little accountability to the disabled
community at large. Even among those with genuine disabilities, those
chosen for Board membership were not representative of their communities.
In a labor union, the union board of directors is supposed to
have and honest and fair election-- Landrum-Griffin Act. Each member
is entitled by law to the proper services of the union-- it is illegal,
for example, to give lesser service to a loser in last year's board
election. Such protections have yet to be written into specifications
for ILC's
So now the ILC here won't do attendant referral at all. Or so
I have heard.
But there is a bright spot here. ADAPT is thinking of having an
office-- sort of like an ILC, but without the bull-corn-- here in Austin.
So, we may get things worked out after all.
Check the news. ADAPT is in Atlanta right now, preparing to
demonstrate in behalf of attendant services.
I am still getting over my heart surgery. (An AICD implant.)
But things are looking good. In two weeks, I'll be back at my job
again.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!382!18!Bill.Scarborough
Internet: Bill.Scarborough@f18.n382.z1.fidonet.orgAl.Manning@f223.n163.z1.fidonet.org (Al Manning) (10/05/90)
Index Number: 10886
It is not really surprising that people who are not disabled, or
have only a minor problem, cannot relate to the severly
challenged. I use a wheel chair if I am going more than around my
own yard, and often in abd around the yard. But I can get out of
the silly thing ang get around. Just cannot go too far or too
fast. Still despite using a chair most of the time I know that I
cannot really relate to the problems of the severly disabled. At
best I can try to understand but we cannot really do the job of
representing them. Despite what a lot of goody goody folk like to
say. i think the main reason for some of them is self ego
message. Maybe it makes them feel good but it does damn all for
the folk who need the help.
Enough of my complaining and yapping of - have a good day and take
care.
Al Manning
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!223!Al.Manning
Internet: Al.Manning@f223.n163.z1.fidonet.org34AEJ7D@CMUVM.BITNET (Bill Gorman) (11/05/90)
Index Number: 11500 Recently, I have noticed ads for ASL (I think) training videotapes. Has anyone had any experience with these? They are usually hawked on late-nite TV with a reference to an 800 number. Does anyone know what is behind the sudden unusual (and scary!) scarcity - actually, damn near unavailability! - of a drug called Diamox Sequel(sp)? It is used in the treatment of glaucoma. W. K. (Bill) Gorman