Butch.Walker@f3.n157.z1.fidonet.org (Butch Walker) (07/21/90)
Index Number: 9366
[This is from the Silent Talk Conference]
I've been involved in FidoNet and Echomail so long I sometimes
forget some folks don't have any clue as to who I am, or what my story
is, or why I post messages about Electronic Support Groups. Some may
think I'm just some relatively new Sysop "Do Gooder" and blow my posts
off as not being relevant.
So, let's start from square one. I started in FidoNet in
Concord California (that's 31 miles due east of San Francisco) in late
1985. I came in as 10/625 & 10/626. I was one of the few to be
running two nodes, two lines, and multitasking two copies of Fido 10#,
then later 11#.
In the spring on 1986 I became the third system outside of
Dallas to run echomail, and about the same time founded Net 161, which
has since spun off four other nets in Northern California. In the
fall of 1986 I hosted a meeting in Chicago to form the FidoNet
backbone, and from early 1987 until late 1987 besides acting as the
first REC for region 10 and the first NEC ever, acted as the First
official ZEC (Jon Sabol holding the unoffical position prior to my
taking it over). During that time with the help of Bob Hartman, Ray
Gwinn and a host of others we created, tweaked, fine tuned, and
debugged what all of you now take for granted.
On January 24th, 1989 my wife (then 29 years old) suffered a
massive intracranial hemorrhage when an arteriovenous malformation
located in her corpus callosum cut loose. We almost lost her. For
ten days she laid in a combination of ICU's, NICU's, and a
neurosurgery floor waiting for brain surgery. For just under a month
she was unable to sit upright without being strapped into position,
and had a wide variety of cognitive deficits.
Before she was even transferred post surgery from UCSF to John
Muir for Rehab I started the THI_CVA echomail conference (commonly
known as the Brain Injury Conference). Thanks to folks I met via that
conference the next days, weeks, months and now a year and a half
proved a bit easier to get through. Ellen still has cognitive
deficits and will have until the day she dies. I have spent 18 months
as a care giver and will continue in that capacity as long as either
of us is still around.
I am as you might now realize a great believer in the impact
and importance of Electronic Support Groups. I have seen in the past
18 months the positive change that takes place when someone stumbles
across one of the groups and finds out that they are not alone, that
others have gone before, and that they can improve and look forward to
the years ahead instead of fearing them.
The US Government estimates (according to the press releases
that accompanied the most recent law that was passed) that 43 million
Americans suffer from a physical or mental disability. First I detest
the word disability, and secondly I'd like to know what they are
smoking. It is estimated (and probably on the low side) that just
under 2 million in the US suffer from Alzheimer's alone. That doesn't
even include the other forms of dementia. It is also estimated that
over 1.5 million in the US suffer a Traumatic Head Injury each year.
Almost 2% of our population walks around with a bomb in their head (an
AVM, or an Anuerysm) and close to 40% of those will hemorrhage during
those individuals lifetimes. How many SCI's each year? In one
Cleveland hospital alone over one weekend there were 5!
What is important to me in those numbers are the astounding
number of us that face those problems daily with no contact with other
individuals facing the same battles. Electronic Support Groups
represent a means by which those individuals can communicate with each
other lending help, support, comfort, hope and information without
leaving the comfort of their homes, without exposing themselves to the
outside world until their self confidence and self esteem can return
to what for them are comfortable levels.
In various conferences over the last year or so I have been
told that the people that need help have found the conferences or that
an adequate means of distributing the conferences exists. I say to
you that feel that way, please send what you are smoking here, because
you are so far out of touch with reality it isn't close to being
funny. In a recent radio interview I said that the odds are better of
winning the big jackpot in the state lottery than for an impaired
individual to find one of the support groups. I said it then and I
say it now. There are so few BBSes internationally carrying the
support group conferences that I for one am ashamed.
When I speak to groups, without fail I am asked if there is a
system in some city that a friend or loved one can log onto to access
one of the support groups. Almost everytime I have to hang my head
and say NO! Frankly it makes me sick to have to give them the bad news.
So, you will continue to see posts from me announcing new
support group conferences, or posting listings of the conferences, or
asking for a system in a given area. If you don't like it, tough
because there are millions out there that aren't as lucky as you.
They haven't found the help yet, and until they at least know it
exists AND can get local access to the help, I'm not stopping!
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!Butch.Walker
Internet: Butch.Walker@f3.n157.z1.fidonet.orgButch.Walker@f3.n157.z1.fidonet.org (Butch Walker) (07/21/90)
Index Number: 9386
I've been involved in FidoNet and Echomail so long I sometimes
forget some folks don't have any clue as to who I am, or what my story
is, or why I post messages about Electronic Support Groups. Some may
think I'm just some relatively new Sysop "Do Gooder" and blow my posts
off as not being relevant.
So, let's start from square one. I started in FidoNet in
Concord California (that's 31 miles due east of San Francisco) in late
1985. I came in as 10/625 & 10/626. I was one of the few to be
running two nodes, two lines, and multitasking two copies of Fido 10#,
then later 11#.
In the spring on 1986 I became the third system outside of
Dallas to run echomail, and about the same time founded Net 161, which
has since spun off four other nets in Northern California. In the
fall of 1986 I hosted a meeting in Chicago to form the FidoNet
backbone, and from early 1987 until late 1987 besides acting as the
first REC for region 10 and the first NEC ever, acted as the First
official ZEC (Jon Sabol holding the unoffical position prior to my
taking it over). During that time with the help of Bob Hartman, Ray
Gwinn and a host of others we created, tweaked, fine tuned, and
debugged what all of you now take for granted.
On January 24th, 1989 my wife (then 29 years old) suffered a
massive intracranial hemorrhage when an arteriovenous malformation
located in her corpus callosum cut loose. We almost lost her. For
ten days she laid in a combination of ICU's, NICU's, and a
neurosurgery floor waiting for brain surgery. For just under a month
she was unable to sit upright without being strapped into position,
and had a wide variety of cognitive deficits.
Before she was even transferred post surgery from UCSF to John
Muir for Rehab I started the THI_CVA echomail conference (commonly
known as the Brain Injury Conference). Thanks to folks I met via that
conference the next days, weeks, months and now a year and a half
proved a bit easier to get through. Ellen still has cognitive
deficits and will have until the day she dies. I have spent 18 months
as a care giver and will continue in that capacity as long as either
of us is still around.
I am as you might now realize a great believer in the impact
and importance of Electronic Support Groups. I have seen in the past
18 months the positive change that takes place when someone stumbles
across one of the groups and finds out that they are not alone, that
others have gone before, and that they can improve and look forward to
the years ahead instead of fearing them.
The US Government estimates (according to the press releases
that accompanied the most recent law that was passed) that 43 million
Americans suffer from a physical or mental disability. First I detest
the word disability, and secondly I'd like to know what they are
smoking. It is estimated (and probably on the low side) that just
under 2 million in the US suffer from Alzheimer's alone. That doesn't
even include the other forms of dementia. It is also estimated that
over 1.5 million in the US suffer a Traumatic Head Injury each year.
Almost 2% of our population walks around with a bomb in their head (an
AVM, or an Anuerysm) and close to 40% of those will hemorrhage during
those individuals lifetimes. How many SCI's each year? In one
Cleveland hospital alone over one weekend there were 5!
What is important to me in those numbers are the astounding
number of us that face those problems daily with no contact with other
individuals facing the same battles. Electronic Support Groups
represent a means by which those individuals can communicate with each
other lending help, support, comfort, hope and information without
leaving the comfort of their homes, without exposing themselves to the
outside world until their self confidence and self esteem can return
to what for them are comfortable levels.
In various conferences over the last year or so I have been
told that the people that need help have found the conferences or that
an adequate means of distributing the conferences exists. I say to
you that feel that way, please send what you are smoking here, because
you are so far out of touch with reality it isn't close to being
funny. In a recent radio interview I said that the odds are better of
winning the big jackpot in the state lottery than for an impaired
individual to find one of the support groups. I said it then and I
say it now. There are so few BBSes internationally carrying the
support group conferences that I for one am ashamed.
When I speak to groups, without fail I am asked if there is a
system in some city that a friend or loved one can log onto to access
one of the support groups. Almost everytime I have to hang my head
and say NO! Frankly it makes me sick to have to give them the bad news.
So, you will continue to see posts from me announcing new
support group conferences, or posting listings of the conferences, or
asking for a system in a given area. If you don't like it, tough
because there are millions out there that aren't as lucky as you.
They haven't found the help yet, and until they at least know it
exists AND can get local access to the help, I'm not stopping!
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!Butch.Walker
Internet: Butch.Walker@f3.n157.z1.fidonet.orgButch.Walker@f3.n157.z1.fidonet.org (Butch Walker) (07/24/90)
Index Number: 9403 [This is from the Silent Talk Conference] >We're indeed fortunate in net 129 to have two boards with a primary >focus on support for persons with disabilities. But as you point >out, there are many other places not so blessed. One of the needs >I see is information, some sort of database of Electronic Support >groups. This would include FidoNet of course, and other sources >as well. Apparently you have been into this. Have you compiled >any such information you could share with us? Don't I wish! One of the things I would like to incorporate into each system that would ultimately tie into an ESG Network would be a Database (Online) of all kinds of related information.. Hospitals, Clinics, Rehab Centers, Support Groups, Agencies, Funding Organizations, Manufacturers, etc... etc.. I'd also like to promote less fragmentation of support groups.. It seems silly to me that the various BBS Networks all have different ABLED Conferences for example. If the idea is to share and exchange information and support why do we keep fragmenting? > >Our echo moderators, Stu and Ann, are currently attempting to >gather a list of boards carrying this SilentTalk echo. We need >to include that in a journal article on the subject that is being >prepared for publication. But since the echo went on backbone >late last year it has really taken off, and even collecting a >complete list of boards is proving difficult. Any ideas? Keeping track is tough. The best you can do is scan the seenbys of message that originate in various parts of the country and also post a who's here type message on occassion. As I get the time or help I'm going to go to the NEC's of each net directly to see who is carrying what and also to appeal for systems in each net to carry the support group conferences. Unfortunately there just aren't enough hours in the day right now. ~ Via ProEdit 3.2R -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!Butch.Walker Internet: Butch.Walker@f3.n157.z1.fidonet.org
Jack.O'keeffe@p0.f89.n129.z1.fidonet.org (Jack O'keeffe) (07/24/90)
Index Number: 9406
[This is from the Silent Talk Conference]
BW> One of the things I would like to incorporate into each system
BW> that would ultimately tie into an ESG Network would be a
BW> Database (Online) of all kinds of related information..
BW> Hospitals, Clinics, Rehab Centers, Support Groups,
BW> Agencies, Funding Organizations, Manufacturers, etc.
Well Butch, there is AbleData which has quite a collection of
manufacturer-related assistive device info. But, coming from
the groves of academia, they chose to put it all on GUI. This
kinda locks out most of the real world, and creates a serious
problem for the folks using synthesizers to read. I understand
they may eventually support high-end MS-DOS systems, but most
probably under Windows.
Maybe we should start thinking about writing a grant proposal to
develop such an ESG Network and DataBase. It would be worth
more than a lot of the garbage that gets funded.
BW> I'd also like to promote less fragmentation of support
BW> groups.. It seems silly to me that the various BBS Networks
BW> all have different ABLED Conferences for example.
I agree conceptually, Butch. But the activity on FidoNet's 'Abled
has reached such a level that it's tough to even read all of it.
McGarry and some others try to gateway the most significant posts
between Networks when possible. I think it's the sheer volume of
traffic on 'Abled that inspired spinoffs like SilentTalk and
BlinkLink. That and escaping from GSK :-)
BW> Unfortunately there just aren't enough hours in the day
Amen!
... Jack.
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!129!89.0!Jack.O'keeffe
Internet: Jack.O'keeffe@p0.f89.n129.z1.fidonet.orgJack.O'keeffe@f26.n129.z1.fidonet.org (Jack O'keeffe) (07/25/90)
Index Number: 9470
[This is from the Silent Talk Conference]
BP> Jack, what do you mean by that? What *is* the difference
BP> between deaf and Deaf? Inquiring Minds Want to Know! ;-)
Hi Bill. The word deaf (small "d") defines a phisiological
condition. Generally the inability to discriminate speech by
ear alone, even with optimal amplification. People who are
deaf may or may not also be Deaf. If not Deaf, they use "total
communication", a combination of speechreading (or "lipreading"),
signing, residual hearing, pad and pencil, whatever it takes to
communicate. They try to remain functional members of a hearing
society.
The word Deaf (big "D") defines a cultural orientation. Persons
whose primary or exclusive means of communication is sign language.
They are usually, but not necessarily, prelingually deaf. They
consider themselves members of Deaf Culture. There are even a few
normally hearing children of Deaf families who are Deaf.
So to confuse things even more, consider this. People who are deaf
may or may not be Deaf. And people who are Deaf may or may not
be deaf. We should be able to get a roaring debate started with
this thread. Any Deaf folks out there?
... I never listen!
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!129!26!Jack.O'keeffe
Internet: Jack.O'keeffe@f26.n129.z1.fidonet.orgButch.Walker@f3.n157.z1.fidonet.org (Butch Walker) (07/25/90)
Index Number: 9471 [This is from the Silent Talk Conference] >Well Butch, there is AbleData which has quite a collection of >manufacturer-related assistive device info. But, coming from >the groves of academia, they chose to put it all on GUI. This >kinda locks out most of the real world, and creates a serious >problem for the folks using synthesizers to read. I understand >they may eventually support high-end MS-DOS systems, but most >probably under Windows. That, like many things coming out of the ivy halls makes a great deal of sense. [frown] >Maybe we should start thinking about writing a grant proposal to >develop such an ESG Network and DataBase. It would be worth >more than a lot of the garbage that gets funded. > We're working on that, but are in limbo until the 501c(3) is approved. I guess I should say we're in limbo on funding, as you can tell development is certainly not in limbo. [grin] BW> I'd also like to promote less fragmentation of support BW> groups.. It seems silly to me that the various BBS Networks BW> all have different ABLED Conferences for example. > >I agree conceptually, Butch. But the activity on FidoNet's 'Abled >has reached such a level that it's tough to even read all of it. >McGarry and some others try to gateway the most significant posts >between Networks when possible. I think it's the sheer volume of >traffic on 'Abled that inspired spinoffs like SilentTalk and >BlinkLink. That and escaping from GSK :-) I guess clarification is in order. I am an extremely strong supporter of narrow topic, specific support groups. And will continue to create conferences for those groups and establish distribution chains. The fragmentation that I was refering to is seperate unconnected support groups existing on FidoNet, AlterNet, RelayNet, SmartNet, InterLink, etc...etc... In my opinion all those do is stroke the ego's of those who found the groups in those Networks, while further limiting the potential support available to the population you are supposedly trying to serve. ~ Via ProEdit 3.2R -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!Butch.Walker Internet: Butch.Walker@f3.n157.z1.fidonet.org
Jack.O'keeffe@f26.n129.z1.fidonet.org (Jack O'keeffe) (07/25/90)
Index Number: 9473
[This is from the Silent Talk Conference]
BW> I guess clarification is in order.
Clarification appreciated. I totally agree with you. So totally
that I've made a point of studiously avoiding the non-FidoNet nets.
I suppose that's why I missed your point the first time.
BW> I am an extremely strong supporter of narrow topic, specific
BW> support groups. And will continue to create conferences . . .
BW> The fragmentation that I was refering to is seperate unconnected
BW> support groups existing on FidoNet, AlterNet, RelayNet, SmartNet,
BW> InterLink . . In my opinion all those do is stroke the ego's . .
We see the same phenomena in the non-electronic support networks, and
for much the same reasons. Eventually there will come a shakeout and
the most effective networks will be the survivors. I suppose that AA
is the classic model for this.
Are you contemplating startup of ESGNet then, Butch? If so, would
it be the solution, or just a compounding of the problem? Possibly a
solution could be found in a system of gateways that would enable the
closely focused suppoprt groups to co-exist on a number of the nets.
Keep on posting here, Butch. I'm interested in your ideas, and the
ESG conferences can benefit from your experience.
... Jack.
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!129!26!Jack.O'keeffe
Internet: Jack.O'keeffe@f26.n129.z1.fidonet.orgMichelle.Pinkerton@p0.f729.n106.z1.fidonet.org (Michelle Pinkerton) (07/27/90)
Index Number: 9537
[This is from the Blink Talk Conference]
Wow... I am impressed not only by your dedication to something
that you believe in, but by your ability to get my head out of
my self-pitying fog long enough to ask you if you might know of
a support group for people who are co-dependants.. or who are
living a life of care-giving to the point of losing who they
are.. I have, for the last 6 months, taken care of a mother who
is suffering from emphyesma, still smokes, is emotionally
abusive to me and my family, and is responsible for almost
ruining a marriage I have treasured for the last 15 years. Any
ideas? imput? thanks...
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!106!729.0!Michelle.Pinkerton
Internet: Michelle.Pinkerton@p0.f729.n106.z1.fidonet.orgButch.Walker@f3.n157.z1.fidonet.org (Butch Walker) (07/27/90)
Index Number: 9568 [This is from the Silent Talk Conference] >Are you contemplating startup of ESGNet then, Butch? If so, would >it be the solution, or just a compounding of the problem? Possibly a >solution could be found in a system of gateways that would enable the >closely focused suppoprt groups to co-exist on a number of the nets. > >Keep on posting here, Butch. I'm interested in your ideas, and the >ESG conferences can benefit from your experience. Yes we will be starting up a new network, but it will be non-hobbiest. It is my intent to get hospitals/rehab centers, etc .. etc. to set up BBSes for use by their patients & the surrounding community. Those systems would carry ALL the support groups. (We have our pilot project starting this week) In reality the new network would act like a backbone and ANY hobbiest system be they FidoNet, AlterNet, FamilyNet, etc.. etc.. could link in via one of the hospital/rehab centers and get the support group conferences using the pockets of the medical facility. The primary reason for a new network is to assure that every major city at least has an access point for the support groups AND that their existence is made known. By organizing the medical facilities you kill both birds with one stone. [grin] I do NOT want to duplicate any conferences. I'm not trying to reinvent the wheel, just give it a better road to roll on. [grin] ~ Via ProEdit 3.2R -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!Butch.Walker Internet: Butch.Walker@f3.n157.z1.fidonet.org
Butch.Walker@f3.n157.z1.fidonet.org (Butch Walker) (07/27/90)
Index Number: 9570 >I have no complaints myself, have you also provided that information >to the local support groups. I recently went by the Lupus Foundation >here and Memphis, while I was there I mentioned this area. I intend >to take some of the messages to them so they can see what is going on. >I'm sure you have done so but maybe some others will think of it as >well. Yes and no. [grin] I have started to contact and meet with local Rehab Centers and Hospitals. As part of that process I have been put in contact with some of the support groups. Right now it's just easier for me to target the medical facilities and the agencies for the impaired, and then trickle down to the support groups. I'm also working with the United Way locally on the project. ~ Via ProEdit 3.2R -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!Butch.Walker Internet: Butch.Walker@f3.n157.z1.fidonet.org