ABLEnews Review 1993
ABLEnews Review
[ABLEnews Review consists of selected messages appearing in the
ABLEnews conference. This issue may be freq'd as ANR9311.* from
Lincoln Legacy (1:109/909), HandiNet News (1:275/429), and other BBSs
carrying ABLEnews files. Please allow a few days for processing.]
ABLEnews Review
Vol. I, No. 11 Earl Appleby, Jr.
November 1993 Moderator/Editor
FEATURES A: Changing the World, Together [Gordon Gillesby]
B: Kellogg Capers [Cal Howarth; Gordon Gillesby]
C: Signs of Progress [Earl Appleby]
D: Disability Stereotypes [Earl Appleby; Bob Sherman]
E: Hollywood Hard of Hearing [Earl Appleby]
F: Morally Disabled [Earl Appleby; Dennis James]
G: Nicole [Gordon Gillesby; Dave Thomas]
ABLENEWS & Editorial Specters [Earl Appleby]
VIEWS
What IS the Story? (Lyme Disease) [Earl Appleby]
Open OLIS! [Patrick Ivey; Earl Appleby; Les Lemke;
Mark Pelchat; Robert Thurlow; Gail Hitson]
Sturge-Weber: What Is It? [Dan Houser]
Headaches and Sturge-Weber Syndrome [Dan Houser;
Peter Camiel]
Story of a Success (Marta Susag) [Gordon Gillesby]
Amputee Swimmer Benefits Children (Carlos Costa)
[Beth Hatch-alleyne]
Senior Citizen Info [Les Lemke]
Abusing Children with Disabilities [Gordon Gillesby]
Guthrie Theater [Ian Herbert; Gordon Gillesby]
TAB Ramp Attack [Leah Owens; Paul W]
Oregon Braille Bill [Patrick Ivey]
The Power of To [Gordon Gillesby]
Royal Porphyria [Arlette Lefebvre]
ADVOCACY Bumper Stickers [Bob Lantrip; Steve Dressler;
Jeffrey Vandyke]
Bureaucratic Brushoff [Leah Owens; Dennis James;
Love Letters Inc. (Linda Bremner) [Leah Owens;
Bob Lantrip]
Senior Statesman (Dr. Dorothy Peters) [Gordon Gillesby]
Calling on America (National Organization on Disability)
[Gordon Gillesby]
DATA LINE AIDS Snapshot [Earl Appleby]
MAIL BAG Care??? Haven [Earl Appleby]
Minnesota Relay On Strike [Gordon Gillesby]
NEWSLETTERS Braille Monitor (November 1993) [David Andrews]
ABLEnews Review (October 1993) [Earl Appleby]
Disability Notes (September 6, 1993) [Gordon Gillesby]
Access Press (November 1993) [Gordon Gillesby]
Futurity (November 1993) [Gordon Gillesby]
North Suburban Consumer Advocates for the Handicapped
Newsletter (November 1993) [Gordon Gillesby]
Access Today Newsletter [Gordon Gillesby]
Deaf History International [Earl Appleby]
Island County Coalition of Citizens with Disabilities
Newsletter (August 1993) [Earl Appleby]
RESOURCES Diabetes Discussion BBS (John Hargrove, SysOp)
[Earl Appleby]
Tourettes Syndrome Echo [Pete Richardson (Moderator);
Earl Appleby]
Gateway 2000 Info [Gary Bottger; Earl Appleby]
NFB Low-Interest Loans [David Andrews]
Layman's Guide to Sturge-Weber Terms [Dan Houser]
SSA Publication for the Blind [Gordon Gillesby]
DEAFology 101 Videotape [Ken Glickman]
Assistive Technology Network [Gordon Gillesby]
Accessible Apartment Clearinghouse [Gordon Gillesby]
One-Hand Key Operation Software [Bill Wilson;
Jim Stewart; Lee Lawson]
Deaf Resources [Earl Appleby]
ABLE SIGs [Earl Appleby]
Child Restraint? [Cheryl Johnson; Floria Antin;
Marguerite Kendall; Dave Thomas]
Sister Kenny Brain Injury Clinic [Gordon Gillesby]
Disabled and Proud Radio Program [Gordon Gillesby]
Cross Our Desk [Earl Appleby]
Internet E-Mail [Gerard Droege]
Accessible Vacations [Arlette Lefebvre]
Post-Polio Echo [Bob Lantrip (Co-Moderator)]
VETERANS V.A. Survey: Were You Contacted? [Gjoseph Peck]
A Grateful Nation Remembers [Gjoseph Peck]
More V.A. Victims [Earl Appleby]
Disabled Vets' COLA [Gordon Gillesby]
God Bless the Vet! [Earl Appleby]
Vets [Patrick Ivey]
Not the Best [Earl Appleby; Rev. Dave]
Editor's Note: ABLEnews Review is compiled from and for our ABLEnews
community with appreciation for all contributors in the hope such
news and views may stimulate thinking and in the conviction that one
can disagree without being disagreeable. Bracketed contributors are
the ABLEnews participants who posted the item, not necessarily its
author.
ABLEnews P.S.
ABLEnews is an interactive computer conference featuring news,
resources, and referrals of special interest to persons with
disabilities. It is carried by more than 220 BBSs in the US, Canada,
the UK, Australia, Greece, and Sweden and is available by request
from Fidonet (where it is on the backbone), ADANet, and Family Net,
and other nets. ABLEnews Review and our other digests of
disability/ medical news: Of Note and MedNotes (ideal for bulletin
use) are distributed via ABLENEWS on the Fidonet filebone. For
information, netmail Warren King (1:275/429).
...For further information, contact CURE, 812 Stephen Street, Berkeley
Springs, West Virginia 254511 (304-258-LIFE/5433).
Editor's Note: ABLEnews Review is compiled from and for our ABLEnews
community with appreciation for all contributors in the
hope such news and views may stimulate thinking and in
the conviction that one can disagree without being
disagreeable. Bracketed contributors are the ABLEnews
participants who posted the item, not necessarily its
author.
ABLEnews P.S.
ABLEnews is an interactive computer conference featuring news,
resources, and referrals of special interest to persons with
disabilities. It is carried by more than 220 BBSs in the US, Canada,
the UK, Australia, Greece, and Sweden and is available by request
from Fidonet (where it is on the backbone), ADANet, and Family Net,
and other nets. ABLEnews Review and our other digests of
disability/medical news: Of Note and MedNotes (ideal for bulletin
use) are distributed via ABLENEWS on the Fidonet filebone. For
file information, netmail Warren King (1:275/429).
...For further information, contact CURE, 812 Stephen Street, Berkeley
Springs, West Virginia 254511 (304-258-LIFE/5433).
(34) Tue 2 Nov 93 6:22a
By: Bob Lantrip
To: Jeffrey Vandyke
Re: Bumper stickers
JV> BL> Hey guys, I think you have a great idea, but be careful!
You could be
JV> BL> guilty of defacing personal property.
JV>Yeah, we know, Bob... this joking just stems from frustration
JV>against unenforced parking laws. I've even seen messages from
JV>a couple of people here who have consistent problems with law
JV>enforcement officers and commercial delivery people parking in
JV>handicap spots.
I'm embarrassed to tell this, but we have two employees at the
jail who work the 2300 to 0700 shift and park in the only two
handicapped parking spots on the lot. I'm seldom down there
during those hours, or I'd raise some hell about it. Our jail
administrator just retired and we now have a new one. The guy
who just retired is a longtime friend of mine and I didn't want
to cause him any headaches, but the new administrator isn't a
friend (yet) so I'll probably get on his case about it.
Hugs...Bob
posted on:
IRONSIDES BBS. (405) 226-7126 (1:19/131)
(48) Thu 4 Nov 93 12:13p
By: Steve Dressler
To: Bob Lantrip
Re: Bumper stickers
BL> I'm embarrassed to tell this, but we have two employees at the
jail who work the 2300 to 0700 shift and park in the only two
handicapped parking spots on the lot. I'm seldom down there
during those hours, or I'd raise some hell about it.
Why raise hell about it, give them something to raise hell
about... Write them a ticket.
posted on:
BitStream: Kiefer, Okla 918-321-5203 ZyXEL 19.2k (1:170/202)
(67) Sun 7 Nov 93 7:52a
By: Jeffrey Vandyke
To: Ray Landers
Re: Bumper stickers
Hi, Ray!
RL> i see that you are much nicer than i am.
Maybe, maybe not.
RL> i aparently deal with my anger differently.
My wife wonders if I have a temper. I do, but it doesn't
generally do any good to express it to most people.
Jeff
posted on:
Project Enable BBS - (304) 759-0727 - Cross Lanes, WV
(68) Sun 7 Nov 93 7:52a
By: Jeffrey Vandyke
To: Bob Lantrip
Re: Bumper stickers
Hi, Bob!
-=< Bob Lantrip was heard to say to Jeffrey Vandyke On 11-0293 06:22
BL> I'm embarrassed to tell this, but we have two employees at
BL> the jail who work the 2300 to 0700 shift and park in the
BL> only two handicapped parking spots on the lot. I'm seldom
BL> down there during those hours, or I'd raise some hell about it.
Oh, don't raise a stink about it... just take a good picture
some night displaying the parking signs and license plates,
then take out an ad in the paper for one day. The ad should
just display the picture with a caption of the date and time.
You _might_ get a response. <g>
Mean, aren't I? :)
Jeff
posted on:
Project Enable BBS - (304) 759-0727 - Cross Lanes, WV
(93) Mon 8 Nov 93 6:36a
By: Bob Lantrip
To: Jeffrey Vandyke
Re: Parking pictures...
JV> BL> I'm embarrassed to tell this, but we have two employees at
JV> BL> the jail who work the 2300 to 0700 shift and park in the
JV> BL> only two handicapped parking spots on the lot. I'm seldom
JV> BL> down there during those hours, or I'd raise some hell about
it.
JV>Oh, don't raise a stink about it... just take a good picture
JV>some night displaying the parking signs and license plates,
JV>then take out an ad in the paper for one day. The ad should
JV>just display the picture with a caption of the date and time.
JV>You _might_ get a response. <g>
Hmmm, I might just take that picture and see that it gets left in the
jail administrator's mail box. Or....maybe even the Sheriff's.
Hugs...Bob
posted on:
IRONSIDES BBS. (405) 226-7126 (1:19/131)
(139) Sat 13 Nov 93 12:49a
By: Jeffrey Vandyke
To: Bob Lantrip
Re: Parking pictures...
Hi, Bob!
BL> Hmmm, I might just take that picture and see that it gets left
in the
BL> jail administrator's mail box. Or....maybe even the Sheriff's.
That would be cheaper than what I suggested!
Jeff
posted on:
Project Enable BBS - (304) 759-0727 - Cross Lanes, WV (1:279/14)
(164) Sun 14 Nov 93 6:28a
By: Bob Lantrip
To: Jeffrey Vandyke
Re: Parking pictures...
JV> BL> Hmmm, I might just take that picture and see that it gets
left in the
JV> BL> jail administrator's mail box. Or....maybe even the
Sheriff's.
JV>That would be cheaper than what I suggested!
Maybe more fun too!!
Hugs...Bob
posted on:
IRONSIDES BBS. (405) 226-7126 (1:19/131)
(36) Tue 2 Nov 93 6:49p
By: Leah Owens
To: Michael Collins
Re: Chasing st. elmo's fire
You are so right, it is all bureaucracy though. In fact they
advertise on tv all the time that if you're homeless and ill then
you can qualify for SSI benefits. I've been fighting with Social
Security since April '92 for benefits for him, they have proven
that my son is paralyzed. I've appealed 2 times, both times they
say we know he is paralyzed but we do not know why, so he can not
have any money. They even went to the extent of sending him to a
psychiatrist which proved my son is not mental. It is now that I
got a law suit against them but was told when hired a lawyer in
June, not to expect a court date before 8-10 months. I'm a single
mother who is disabled and get ssi, $450 a month is not enough to
live off of. We have no family etc. Now where do you go? Also
this god forsaken state has nothing to offer the disabled. No
transportation etc.
posted on:
Taurus BBS * Millsboro DE* (302)934-1323 (1:150/5)
(50) Thu 4 Nov 93 7:29p
By: Dennis James
To: Leah Owens
Re: Re: Chasing st. elmo's fire
> for SSI benefits. I've been fighting with Social Security
since April '92 for benefits for him, they have proven that my
son is paralyzed.
If a doctor states that he is disabled and unable to work and gives
the medical reasons and documentation than that is all that should
be needed.
> I've appealed 2 times, both times they say we know he is
paralyzed but we do not know why, so he can not have any money.
They even went to the extent of sending him to a psychiatrist
which proved my son is not mental. It is now that I got a law
suit against them but was told when
Good that you got a lawyer. But would like to make a suggestion.
Two years ago I reapplied for SSDI after being turned down a few
years before. I ended giving up at that time. At the time I was
totally disabled and had all documented records and such. I have
a wife and four kids. All the kids under age 13. At the time we
were on food stamps, welfare, with my wife only able to work part
time due to needing care for the kids and helping take care of
me. When I finally got all the paperwork completed to SS
satisfaction, I waited and than got a reply that due to
insufficient documentation and needing more info my case would
probably take about 6 to 8 months to determine my elegibility.
At that point my family and I had hit rock bottom. We were facing
eviction, battling to keep the utilities on and had just about
used up all resources for that. I decided I was not going to
take it.
I put pen to paper and wrote to the President. I explained the
situation and told him about our circumstances and that we were
about to become homeless. Now, I don't know if the President
(BUSH) actually read my letter, but someone did. Within 3 weeks
of my mailing that letter I had been approved and received my
first check, which also included some back payment. We had just
gotten evicted from our home, that very same day. In 15 degree
weather.
I don't know if writing to the President will help you, cause I
guess its kinda iffy if your letter will be read by the right
person on his staff, but it couldn't hurt to write. And to be
safe, write to a few congresspersons and senators. Dont be shy
and be afraid of telling them what your situation is and how its
hurting you and your son.
> hired a lawyer in June, not to expect a court date before 8-10
months. I'm a single mother who is disabled and get ssi, $450 a
month is not enough to live off of. We have no family etc.
Now where do you go?
I feel for you. At least I had my wife, course and my kids. But I
do know what its like to struggle. We were trying to get by on
about 600 a month plus the food stamps.
> Also this god forsaken state has nothing to offer the disabled. No
transportation etc.
Thats where you hire a lawyer to fight for the rights due you as a
disabled person. Get a copy of the ADA law and read it. It makes
for some interesting reading.
I wish you all the best.
Dennis
posted on:
Disability Hotline (1:387/509.1)
(80) Sun 7 Nov 93 12:04a
By: Leah Owens
To: Dennis James
Re: Re: Chasing st. elmo's fire
Thanks for the info, but I've called and written every state rep
and congressman last year when it was election time. They all
said it was my problem. The governor told me to get lost he had
better things to do. It seeems as though it is an ever losing
battle. Stay in touch.
posted on:
Taurus BBS * Millsboro DE* (302)934-1323 (1:150/5)
(87) Sun 7 Nov 93 11:09p
By: Leah Owens
To: Dennis James
Re: Re: Chasing st. elmo's fire
I thank you for your concern also, as this d-- state here could
care less. There is nothing for the disabled. Only if you're
over 60. I reccieve nothing for my son. I am disabled and then
was just given the news Frliday that I'm legally blind. When it
rains it pours. Half the doctors around here aren't worth the
time of day and if they do not not what the problem is their
favorite answer is it's all in your head. That is one thing that
has not helped the situation. What makes it worse is having to
deal with it alll alone. Instead of the doctor stating I do not
know why but let's send him here, he just say its psychological.
Thanks again, stay in touch.
posted on:
Taurus BBS * Millsboro DE* (302)934-1323 (1:150/5)
(174) Mon 15 Nov 93 7:43p
By: Leah Owens
To: All Users
Re: HELP!!!!
There is a great Lady name Linda Bremner who in 1985 started a
non profit organization for children with catastrophic Illnesses,
age birth to 21. She is always in need of donations of any kind
and is tax deductible. Whether it be money or gifts, supplies
etc. Linda had a son that died at the age of 8 years of cancer,
and she saw the enjoyment of mail he got. Linda offers emotional
support in the form of monthly newsletters, post cards, greetings
cards, banners, gifts etc. Cheerful correspondence to brightenl a
childs day and is all written by volunteers. Any one who knows
of a child that would benenfit from this, please feel free to
send their name, address, birthdate and phone number to:
Love Letters, Inc.
P. O. Box 416875
Chicago, Illinois 60641-6875
phone: 708-515-9501 or 620-6386
Or feel free to contact Linda if you would like to donate in
anyway. Even if you'd like to help with sending cards etc. Feel
free to mention my name that I told you, Linda and Love Letters
have really helped my son and helps support him a great deal.
Profit organization for children with catastrophic Illnesses, age
birth to 21. She is always in need of donations of any kind and
is tax deductible. Whether it be money or gifts, supplies etc.
Linda had a son that died at the age of 8 years of cancer, and
she saw the enjoyment of mail he got. Linda offers emotional
support in the form of monthly newsletters, post cards, greetings
cards, banners, gifts etc. Cheerful correspondence to brightenl a
childs day and is all written by volunteers. Any one who knows
of a child that would benenfit from this, please feel free to
send their name, address and phone number to:
Love Letters, Inc.
P. O. Box 416875
Chicago, Illinois 60641-6875
phone: 708-515-9501 or 620-6386
Or feel free to contact Linda if you would like to donate in
anyway. Even if you'd like to help with sending cards etc. Feel
free to mention my name that I told you, Linda and Love Letters
have really helped my son and helps support him a great deal.
posted on:
Taurus BBS * Millsboro DE* (302)934-1323 (1:150/5)
(213) Tue 16 Nov 93 6:50p
By: Leah Owens
To: Gail Hitson
Re: Let's help....
There is a great Lady name Linda Bremner who in 1985 started a
non profit organization for children with catastrophic Illnesses,
age birth to 21. She is always in need of donations of any kind
and is tax deductible. Whether it be money or gifts, supplies
etc. Linda had a son that died at the age of 8 years of cancer,
and she saw the enjoyment of mail he got. Linda offers emotional
support in the form of monthly newsletters, post cards, greetings
cards, banners, gifts etc. Cheerful correspondence to brightenl a
childs day and is all written by volunteers. Any one who knows
of a child that would benenfit from this, please feel free to
send their name, address, birthdate and phone number to:
Love Letters, Inc.
P. O. Box 416875
Chicago, Illinois 60641-6875
phone: 708-515-9501 or 620-6386
Or feel free to contact Linda if you would like to donate in
anyway. Even if you'd like to help with sending cards etc. Feel
free to mention my name that I told you, Linda and Love Letters
have really helped my son and helps support him a great deal.
This is a message I had just left for All on the various echos
and I know if you contact Linda I know she will really cheer her
up. Also if you would like further info on her let me know.
posted on:
Taurus BBS * Millsboro DE* (302)934-1323 (1:150/5)
(220) Wed 17 Nov 93 7:53a
By: Bob Lantrip
To: Leah Owens
Re: HELP!!!!
LO> ...Any one who knows of a child that would benenfit from
this, lease feel free to send their name, address and phone
number to:
Love Letters, Inc.
P. O. Box 416875
Chicago, Illinois 60641-6875
When I had Polio in 1945 I got tons of cards, etc. from friends
and relatives. One aunt sent a card everyday. I still have all
these in a big old scrapbook and wouldn't take a million dollars
for it. I was 4 1/2 at the time and can still remember waiting
for the postman everyday. Give Linda my love and tell her a check
will be in the mail as soon as I receive my next Soc. Sec. check.
Hugs...Bob
posted on:
IRONSIDES BBS. (405) 226-7126 (1:19/131)
(243) Fri 19 Nov 93 6:34p
By: Leah Owens
To: Bob Lantrip
Re: HELP!!!!
Thank you so much. I will tell Linda when I here from her. With
my son being one of her kids as she calls it, She has brought so
much joy to; him since his disability. We have no family and
I've recently have become legally blind on top of my other
medical problems. I'll be getting a letter out to her tomorrow.
And if you know of anyone else who would be interested in helping
a good cause pass the word. Linda also celebrates Christmas in
July as because some of these kids don't make it until Christmas.
If you're interested in knowing anymore about Love Letters, just
feel free to ask. Smile!!!!!!!
posted on:
Taurus BBS * Millsboro DE* (302)934-1323 (1:150/5)
(179) Tue 16 Nov 93 12:10p
By: Gordon Gillesby
To: All
Re: AGING - NOT JUST STAYING
Aging - Its Not Just Staying Alive
Dorothy Peters -
As I looked across the table I saw a very attractive older
woman. She had beautiful white hair and a charming smile. For
the next two hours I enjoyed learning how rich and full one's
life can be living with a disability at the age of eighty.
Dr. Dorothy Peters is well known by the disability community for
her advocacy in many areas, including Metro Mobility. In fact,
that's how this writer first had the opportunity to meet her.
Back in the early 80's, we both served on that Advisory
Committee. Miss Peters was a fighter then as she still is today.
She's also known for her lobbying efforts on behalf of rights for
persons with disabilities at the national, state and local
levels.
Although Peters didn't acquire her disability until the age of
forty, she's become an expert and an advocate in the field of
disability. Her work with the Red Cross in hospital services
resulted in an accident that would change her life forever. As
she was driving military men back to a base one evening, she
caught her heel in the hem of her skirt and missed the step on
her way off the bus, injuring her knee. The aftermath of this
was that the doctors did not set it right, leaving Miss Peters'
leg permanently straight.
Working with the Red Cross was just one of the pursuits she
followed. Prior to that, she had received teacher's training.
She taught all eight grades in a one room school house in her
home state of Nebraska. At the same time, she was caring for her
aging mother at home. Dr. Peters went on to earn degrees in both
sociology and psychology. With these credentials, she taught at
the University of Maryland and George Washington University. In
the early 1980's, she was asked by Courage Center to become their
resident psychologist.
Her philosophy has always been- "You have to take responsibility
for yourself first. Then use your abilities to help others." And
this is how Peters has lived her life.
She has always been a strong advocate for people with
disabilities. "Dorothy asks poignant questions that challenge the
experts," says Marge Goldberg, Co-director of PACER. "She is a
grand lady."
Dr. Dorothy Peters serves as an excellent role model to many of us
who are groping our way through the aging process. She has
sought and gained knowledge in this area as well. All one has to
do is to look at her library to know that she keeps up with the
latest in gerontology. She has held positions on the National
Council of Aging.
Today, Dorothy lives independently in her own accessible
apartment in a Minneapolis suburb. While she participates in the
congregate dining program, she does some of her own cooking on
weekends. She accepts some help with the cleaning. Although she
is able to stand and walk a little, she uses a wheelchair much of
the time.
Up until two years ago, she still kept up with all of her
volunteer activities. That's when the transportation became her
biggest source of difficulty. Now it's hard for her to make
arrangements to get to doctor's appointments or do grocery
shopping. Yet, she feels that she has the fewest problems of
anyone in her building.
She has never allowed her disability to hold her back from
anything she's wanted to do. Her love for life and willingness to
advocate for people exemplifies her dynamic character and
perseverance. We all have a lot to learn from her.
Happy 80th Birthday, Dorothy, and many more!
[from Access Press, for further info, see Access Press below]
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
(185) Tue 16 Nov 93 12:51p
By: Gordon Gillesby
To: All
Re: CALLING ON AMERICA
Calling on America
Jim Brady, Vice Chairman of the National Organization on
Disability, [has] challenged the mayors and leaders of small
towns across America to carry out a seven-point program to bring
about full participation of people with disabilities in all
aspects of community life.
Brady is leading a national "Calling on America: campaign in
which he urges all Americans, disabled and non-disabled alike, to
release the "tremendous human potential of Americans with
disabilities." He is calling on towns, cities and counties to
make a commitment and carry out local actions they consider
important.
As part of his "Calling on America" campaign, Brady outlined the
following seven-point program for mayors and local leaders:
1. Hire people with disabilities and urge local
organizations and businesses to do so.
2. Open educational opportunities for young people
and adults with disabilities.
3. Help ensure people with disabilities are included
and welcomed in the congregations of local
churches and synagogues.
4. Make public and private buildings and facilities
accessible so that people with disabilities can
work, go to school, shop, vote, utilize professional
services and take part in recreational, social, and
cultural activities.
5. Ensure that public transportation and housing are
accessible.
6. Increase acceptance and improve attitudes toward
people with disabilities by fighting prejudice and
discriminatory practices.
7. Meet the spirit of the Americans with Disabilities
Act (ADA) in your community by going beyond its
legal requirements. Involve people with disabilities
fully in the process.
Brady explains, "You know, it's a funny thing about disability.
Most of us think of it as something that happens to someone
else-not to us. The truth is that disability know no
distinctions. It is completely non- partisan and bi-partisan.
Just as quickly as it happened to me, it can happen to you or
someone you love."
This article is from the NSCAH Newsletter and may be reprinted
with attribution; letters and submissions are welcome. For
more information or to submit material for publication, please
contact:
NSCAH
North Suburban Consumer Advocates for the Handicapped, Inc.
1201 - 89th Avenue N.E.
Suite 345, Room 465
Blaine, MN 55434
(612) 783-4708
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
ABLEnews Review is published by CURE Ltd. For further information,
contact CURE, 812 Stephen Street, Berkeley Springs, West Virginia
25411 (304-258-LIFE/258-5433).
(176) Fri 19 Nov 93 9:49p
By: Earl Appleby
To: All
Re: AIDS Snapshot
ABLEnews Dataline
AIDS Snapshot
10% of the nation's AIDS cases are in Florida . Almost half of
Florida's cases are in Dade County.
22% of US AIDS cases are women, but 18% of the AIDS cases in
Florida's Broward and Dade Counties are women, and 24% of those
in Palm Beach County, Florida.
7% of US AIDS cases are due to heterosexual contact, but the rate
of heterosexual transmission of AIDS in Broward, Dade, and Palm
Beach Counties is 19%, 20%, and 32% respectively.
Nearly two-thirds of Florida's 721 pediatric AIDS cases are in
Broward, Dade, and Palm Beach Counties.
Top 5 US AIDS Rates (per 100,000 women)
A: Overall B: Black, Non-Hispanic
1: New York City, NY A: 41.5 B: 90.9
2: West Palm Beach, FL A: 38.1 B: 295.4
3: Ft. Lauderdale, FL A: 34.1 B: 199.5
4: Newark, NY A: 29.6 B: 105.5
5: Miami, FL A: 29.1 B: 125.2
[Source: Centers for Disease Control and Prevention]
posted on:
ABLEnews...for any number of reasons. (1:262/4)
ABLEnews Review is published by CURE Ltd. For further information,
contact CURE, 812 Stephen Street, Berkeley Springs, West Virginia
25411 (304-258-LIFE/258-5433).
A: Changing the World, Together
(28) Tue 2 Nov 93 10:28a
By: Gordon Gillesby
To: All
Re: changing the world together
A Story of Empowerment: Changing the World, Together
by Sue Swenson
The following article summarizes key statements from Sue
Swenson's testimony to the Senate Subcommittee on Disability
Policy Hearing Regarding Reauthorization of the Developmental
Disabilities Assistance and Bill of Rights Act on June 29, 1993.
As Futurity is going to press, Congress is still discussing and
deciding upon the Act's reauthorization.
I live in Minneapolis, Minnesota, with my husband Bill and our
three sons: Will, who is 13; Charlie, who will be 11 in August;
and Eric, who is 5. I was the third generation of my family to
grow up in Red Wing, Minnesota, which is just down the road from
Lake Wobegon. I went to college and graduate school at the
University of Chicago. I thought my supportive family and good
education made me ready to be a good parent. As it turned out, a
program made possible by the Developmental Disabilities Act made
more difference than anything else. I want to tell you my
personal story of empowerment. Because of the DD Act there are
many other people who have stories like mine to tell. I could
try to give you numbers, but I couldn't dream of telling all the
stories. I think the personal impacts of empowerment are greater
than the numbers might show.
Ten years ago when Charlie was nine months old, his pediatrician
first acknowledged that he had severe and multiple disabilities.
I was pretty sure that the bottom had dropped out of my life. No
one I knew had any ideas that could help me deal with the reality
of raising a son who probably would not walk or talk, and who
probably couldn't see very well, either. My experiences were
typical of the times: I knew very few people with disabilities
and no people with severe disabilities. Over the years I
collected the usual images from the movies like "The Miracle
Worker," which taught me that good strong people can fix anything
if only they never give up. If you add to that a few quick
channel changes through the ridiculous telethons and a few
passing glances at those ads offering a "loving environment for
your handicapped loved one" in the back of magazines and some men
panhandling from wheelchairs in downtown Chicago, you have about
exhausted my whole experience with disability before my son was
diagnosed.
I wish I could say we faced the challenge of our son's disability
heroically, but we didn't. I spent whole weeks crying. We
struggled. We couldn't find anybody willing to care for a baby
with disabilities, so one of us had to be home all the time. As
time went on and Charlie got bigger, we avoided taking our boys
out, even to the park, because we couldn't cope with all the
prayers, pity, stares, and outright hostility we encountered. We
worked very hard on the therapies, silently hoping that Charlie
would "get better" so we could go back to the real world. We
were pretty grim, even for Scandinavians. I remember that time
as one long black-and-white Bergman movie.
Four years later, during the 1987-88 school year, Charlie was
going to school in a segregated classroom for children with
multiple disabilities inside a segregated school for children
with disabilities, all the way across town from our house
(recommended as "the program we have for children like Charlie").
I did whatever the "experts" told me to do, in the hopes that it
would help, but I couldn't help asking questions. Halfway
throughout the year, Charlie's new teacher slipped me an
application to a program called Partners in Policymaking, which
was offered by the Minnesota Governor's Planning Council on
Developmental Disabilities. She told me it would be good to get
some answers to my questions. The application required a
commitment from me, that I would attend all the sessions and do
the homework. In return, I was promised a free, intensive
program that would give me tools and access to ideas.
At Partners, my 30 classmates and I had a chance to get to know
national leaders like Ed Roberts, Ian Pumpian, and Lou Brown and
real moms like Fran Smith and Betty Pendler who told us what was
working out there. They taught us to use "people first
language," and the history of the disability movement, from the
parents' movement right up to People First. We learned about
independent living, supported employment, assistive technology,
and family support. We learned how to access the human service
system. We learned about personal futures planning and whole
life planning. We also learned how to participate in the
policymaking process and how to work effectively with
professionals and public servants. We learned that we were the
most reliable experts about what our kids needed, and about what
we needed if we had disabilities ourselves. This was the
toughest learning I ever did, because it was so real and so
important to me and my kids.
I don't remember how it happened, but slowly I became aware that
I was no longer working on fixing Charlie so my family could "go
back" into the real world: now I was working on changing the
attitudes of all those ordinary people, so they would see the
value of communities which include people with disabilities and
all people. I was working to help my friends and neighbors see
that we all live in one world. It is important to me to see to it
that other children wouldn't grow up as I did: removed from any
possibility of understanding the variety and richness of the
human community, left without the ideas I needed to deal with
disability in my own family.
In Partners, I learned that I could stop trying to make Charlie
into somebody he wasn't. I went home from one session feeling as
confident as I've ever felt, and told my husband, "Don't worry,
it's okay, we don't have to change Charlie. We just have to
change the world." In Partners, I learned that the way to change
the world is to focus on what you need to live your life, to
speak up, and to participate. We learned that people need to be
in charge of their own lives.
We learned to ask for what we needed to keep Charlie living with
us, such as: personal care attendant services (to allow him to
have some independence from me and to allow me to work full
time); a power wheel chair, and an elevator at school. The
ten minutes of classroom inclusion in 1989-90 has now expanded
into full inclusion in the fifth grade. Through the use of
facilitated communication and a computer, Charlie can now
communicate! When I asked him what communication means, Charlie
spelled, "POWER." He will also tell you, "I am a very smart
boy." He is proud of himself. His classmates voted him "most
popular" at the end of the year, and he is developing friendships
with other kids both inside and outside of school. Friendships
are the key. Sustaining the positive force of friendship in
Charlie's life is our real goal.
For people with disabilities, change really happens in their
schools, neighborhoods, and families and in the hearts of fine
ordinary people. As Joe Shapiro points out in No Pity, Congress
can sponsor this change by giving us the ADA, the DD Act, and
IDEA, but we must take it to the people, one by one, before real
change happens.
The DD Act made these outcomes possible. Please know that this
legislation makes real and meaningful differences for people with
disabilities and their families.
Copies of the full text of Sue Swenson's testimony may be
requested from the Minnesota Governor's Planning Council.
[from Futurity, see below for further information]
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
B: Kellogg Capers
(166) Sun 14 Nov 93 12:47p
By: Cal Howarth
To: All
Re: Mi p&a leadership school
SUBJECT:MI P&A Leadership School For PWDs
MICHIGAN PROTECTION & ADVOCACY SERVICE
106 West Allegan, Suite 210
Lansing, MI 48933-1706
517/487-1755 800/288-5923
Elizabeth W. Bauer, Executive Director
NEWS RELEASE
October 1993
For further information contact: Carolyn Lejuste
517/487-1755
(Lansing) -- W.K. Kellogg Foundation of Battle Creek, Michigan
has awarded $681,500 to Michigan Protection and Advocacy Service
for a three year project that will launch the LEADERSHIP
DEVELOPMENT SCHOOL FOR PEOPLE WITH DISABILITIES IN MICHIGAN.
"Historically, the disabilities rights movement has been lead by
professionals and family members rather than people with
disabilities themselves," said Elizabeth Bauer executive director
of Michigan Protection and Advocacy Services (MPAS). "This
project offers the opportunity for people with disabilities to
acquire the skills necessary to assume leadership as this
important civil rights movement moves into the next century."
Modeled after the leadership program at Highlander Education and
Research Center of New Market, Tennessee, the school will accept
people with cognitive, emotional, and physical disabilities who
are leaders or emerging leaders of already existing groups.
Application procedures for the first of three years will be in
place by December.
Unique features of the school, which will meet six weekends a
year, include: encouragement to bring a friend with whom to share
the experience, a small stipend to assist in leadership
activities at home, connection to a computer bulletin board, and
opportunity to gain exposure to national leaders in the field of
disability rights.
Michigan Protection and Advocacy Services is a non-profit
organization whose mission is to advance the dignity, equality,
self-determination and expressed choice of individuals. MPAS
promotes expands and protects the human and legal rights of
people through the provision of information and advocacy.
"Self-advocacy is a fundamental value of service delivery," Bauer
said. "The opportunity to expand our capacity to support
emerging leaders in this manner has national significance."
The W.K. Kellogg Foundation was established in 1930 to "help
people to help themselves." As a private grantmaking
organization, it provides seed money to organizations and
institutions that have identified problems and designed
constructive action programs aimed at solutions.
Most Foundation grants are awarded in the areas of youth,
leadership, philanthropy and volunteerism, community-based health
services, higher education, foods systems, rural development,
groundwater resources in the Great Lakes area, and economic
development in Michigan.
Programming priorities concentrate grants in the United States,
Latin America and the Caribbean, and southern Africa.
posted on:
Project Enable BBS - (304) 759-0727 - Cross Lanes, WV (1:279/14)
(278) Tue 23 Nov 93 3:29p
By: Gordon Gillesby
To: Cal Howarth
Re: Mi p&a leadership school
On stardate 9604.32 (11/23/93),
in DRAGnet conference (50) ABLEnews__,
dealing with: Mi p&a leadership school,
Cal Howarth wrote to All:
> MICHIGAN PROTECTION & ADVOCACY SERVICE
> (Lansing) -- W.K. Kellogg Foundation of Battle Creek, Michigan has
> awarded $681,500 to Michigan Protection and Advocacy Service for
a three...
I just *knew* I was eating all that cereal for a good reason.
Now I know what it is.......!!!
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
(365) Sun 28 Nov 93 1:28p
By: Cal Howarth
To: Gordon Gillesby
Re: W.k. kellogg foundation
SUBJECT:W.K. KELLOGG FOUNDATION SUSPICIONS
Dear Gordon,
CH > (Lansing) -- W.K. Kellogg Foundation of Battle Creek,
Michigan has awarded $681,500 to Michigan Protection and
Advocacy Service for a three year project that will launch
the LEADERSHIP DEVELOPMENT SCHOOL FOR PEOPLE WITH
DISABILITIES IN MICHIGAN.
GG > I just *knew* I was eating all that cereal for a good reason.
Now I know what it is.......!!!
Before you take too many more spoonfuls out of that bowl of Corn
Flakes you may want to take a closer look. There are surprises
in this box of cereal!
We are appreciative of W.K. Kellogg Foundation support for the
P&A project. But they support many other initiatives, and I am
very suspicious of at least one of these. The following is an
assemblage of several items, when taken together, will illustrate
my concerns. Bear in mind "Leonard Fleck" and "Just Caring." . .
posted on:
Project Enable BBS - (304) 759-0727 - Cross Lanes, WV (1:279/14)
(366) Sun 28 Nov 93 1:29p
By: Cal Howarth
To: Gordon Gillesby
Re: W.k. kellogg foundation
SUBJECT:W.K. KELLOGG FOUNDATION SUSPICIONS
Muskegon Chronicle, "As We See It," September 15, 1993
MUSKEGON GETS A CHANCE TO INFLUENCE HEALTH CARE REFORM
Once again, Muskegon will lead the way in what could be, in the
words of Fred Culver, Muskegon County Community Foundation board
chairman, "a pilot program for the rest of the nation" that could
well shape the debate about national health care reform.
If successful, a fully developed effort could mean that Muskegon
County would become one of the first communities in the nation to
see universal coverage for all its citizens, with health care
costs managed and under control.
The W.K. Kellogg Foundation's decision to invite the Muskegon
community to participate in a landmark effort to reform the
nation's health care delivery system did not come out of the
blue. The world's second-largest private foundation, with $6
billion of assets, chooses very carefully where to invest its
time, money and expertise.
Muskegon's selection, according to Kellogg officials, is based on
years of observation of a community that has often taken the
progressive path. Muskegon's initiative in creating the
Wastewater Management System, its efforts to preserve the core
city's downtown by enclosing it inside an all-weather mall, and
many other examples of government and private sector cooperation
made it a natural choice.
The presence of the highly regarded Muskegon County Community
Foundation, to be a partner in this endeavor, was of immeasurable
importance. Not many communities can boast of having its own
foundation dedicated solely to good works within the local area.
Muskegon, too, offered economic and ethnic diversity. Here in the
heart of West Michigan is to be found, literally, a microcosm of
America reflecting all manner of agricultural, industrial and
commercial enterprises, employing union and nonunion workers, and
virtually every type of white collar occupation. Also, it is an
area rich in culture and history, as seen by the year-long
African American Celebration and the internationally acclaimed
Muskegon Jewish Centennial.
With the focus on health care, Muskegon's medical establishment was
also of interest. Three great area hospitals, backed by a wide
variety of medical support staff and other medical-related
agencies, make an interesting mix to study such a monumental
question as health care reform. The range of serious medical
problems at the local community level will present researchers
with the kind of challenges they'll face at the national level.
It is now up to the Muskegon community to respond in kind to the
Kellogg Foundation's invitation, especially by participating in
one of the upcoming public forums that will be scheduled to brief
our residents. Should there be sufficient interest in becoming a
Comprehensive Community Health Model, the Kellogg Foundation is
prepared to take whatever steps are necessary to see it through
to a successful conclusion. Only two or three communities in
Michigan will have this golden opportunity.
Most of us resent government's imposition of new programs without
the chance for sufficient public dialogue and input. The Kellogg
Foundation's invitation to Muskegon is a complete reversal of
such practices.
It is our community's chance not only to participate in a historic
revolution of a great social need, but to actually write the
opening chapter.
posted on:
Project Enable BBS - (304) 759-0727 - Cross Lanes, WV (1:279/14)
(367) Sun 28 Nov 93 1:30p
By: Cal Howarth
To: Gordon Gillesby
Re: W.k. kellogg foundation
SUBJECT:W.K. KELLOGG FOUNDATION SUSPICIONS
JUST CARING, MEDICAL ETHICS, AND RELATED OXYMORONS
'90's Health Care Terms and Their Underlying Logics
by Prudence Juris (in "Mouth" magazine, May/June, 1993)
OXYMORON -- a term that speaks out of both sides of its mouth.
Example: mercy killing.
TOPICS FOR THE 90'S
EUTHANASIA gets a lot of coverage. It's hard to follow the news
for long without running across something about it:
the vote in Washington State, the vote in California,
the antics of Michigan's Dr. Death, Jack Kevorkian.
HEALTH CARE RATIONING is less popular with the press, but it
shows up every now and then. The disability
community may not be aware just how vigorously the
idea is being promoted in their own state until it
shows up in the legislature.
GATEKEEPING is the hidden killer. "Ethicists" teach gatekeeping
without saying much about it to the people against
whom the gate are be kept: the expensive, the
unproductive, the old.
Besides being potentially fatal, these topics share their own
peculiar terms and logic.
TERMS
ARTIFICIAL HYDRATION -- water delivered directly to your stomach by
nasogastric tube or even more directly to your veins.
You deal with it "naturally" once it's delivered.
The term artificial does not apply to water sipped
through a straw, drunk from a glass, or delivered
through pipes. Therefore it is not necessary to lap
water from the river to avoid artificial hydration.
ARTIFICIAL NUTRITION -- food delivered directly to your stomach by
nasogastric or other tube or nutritive solutions
delivered directly to your veins. Again, you deal with
it "naturally" once it gets there. Artificial
nutrition does not include Vitamin B shots, royal
jelly skin treatments, pre-slaughtered and
pre-packaged animal parts, or soyburgers.
ARTIFICIAL RESPIRATION (or ventilation) -- air that flows into
your lungs with the help of a machine. If you can't
inhale on your own, the machine will force oxygen into
your lungs. Artificial respiration does not include
oxygen inhaled by athletes, skin divers, and people
who have hangovers.
ETHICS, MEDICAL -- moral practices promoted by tax-supported
individuals and institutions (vs. religious beliefs
promoted by persons and institutions supported by
voluntary contributions).
GATEKEEPING
a. Practice -- sees that society and/or hospital profits are
protected from individuals in need of expensive care. Also
known as silent lynching.
b. Theory -- based on the belief that the individual should be
sacrificed to benefit the state. See also: lynch mob
democracy.
JUST (medically) -- cost-effective.
JUST CARING -- a project designed to promote rationing. It relies
heavily on an automated game in which players must decide
who lives and who dies. Effect is to desensitize and
enthuse participants.
LYNCH MOB DEMOCRACY -- a group making itself comfortable at the
expense of an individual life. (Unlike the victim of
gatekeeping, the lynchee is aware of what is happening,
but, like the victim of gatekeeping, is not consulted.)
MORAL -- by definition, what an ethicist believes.
NON-PRODUCTIVE (an ethics adjective which modifies "person") --
someone without resources; a person from whom others cannot
draw resources; a person who cannot fight back.
PRODUCTIVE (an ethics adjective which modifies "person") -- someone
with resources; person from whom others draw resources;
person who can fight back.
PSEUDO-MORAL -- the morality of people who don't agree with an ethicist.
PVS, FULL BLOWN -- refers to "persistent vegetative state."
Although the latest word is that, in his own dim way, the
"vegetable" feels pain, he's out of it. (Has he attained
nirvana?) Wherever he is, the doctors are betting he'll stay
there. At least until someone pulls his plug. Or he dies on
his own. Or comes out of it.
PVS, NEAR -- near persistent vegetative state. Sometimes, at
least, he reacts to people and other sources of pleasure and
irritation. But though his family may think he is improving,
he is a far cry from his former alert and active self.
RATIONING -- funding the treatment of one person out of the money
saved by refusing treatment to another.
SYMMETRY -- in medical ethics, this is the principle that the lives
of sick or injured people whose needs cannot all be met
should not be saved.
UNDERLYING LOGICS
THE 33% SOLUTION
PROBLEM: One third of the people on Medicaid are disabled
and/or elderly, and two thirds of Medicaid money is spent on
them and/or their institutionalization. The other two thirds
of the people on Medicaid, children and the adults raising
them, account for one third of Medicaid expenditures.
LOGIC: Medical care should be evenly distributed among all
people, whether they want it or not.
SOLUTION: Stop paying for people who need lots of it so you
can afford it for lots and lots of people who don't want much
of it.
THE 10% SOLUTION
PROBLEM: 10% of the people use almost twice the health care
dollars used by the other 90%. And the sickest 1% use a
quarter of all benefits.
LOGIC: Healthy people shouldn't have to pay the bills for
sick people.
SOLUTION: People with expensive illnesses should pay their
own way. Or drop dead.
LEAPING LOGICS
PROBLEM: You're expensive.
LOGIC: If, in the highly unlikely event that, some time in
the undefinable future I were in your condition, I wouldn't
want to live. This entitles me to demand that you die now.
SOLUTION: You die now.
DIFFERENTIAL MORALITY
PROBLEM: You're expensive.
ACTUARIAL MORALITY: If you require expensive treatment, you
shouldn't get it. It's not cost-effective. It cuts into
profits. Caring for you would be bad business.
MEDICAL-ETHICAL MORALITY: If you require expensive treatment, you
shouldn't get it. It's not cost-effective. It cuts into social
resources. That would be unjust.
BOTTOM LINE: You can't have it.
###
posted on:
Project Enable BBS - (304) 759-0727 - Cross Lanes, WV (1:279/14)
C: Signs of Progress
(237) Mon 22 Nov 93 8:32p
By: Earl Appleby
To: All
Re: Signs
ABLEnews Extra
Signs of Progress
Hedgesville, WV The classroom at Hedgesville High School is alive
with silence.
Alive with silence how can that be?
Just watch Gloria Hollen as she works with students in her
intermediate sign language class, sponsored by Berkeley County
Adult and Community Education.
Watch her hands, true, but also watch her eyes, her eyebrows, her
facial muscles. Each conveys an image that helps her students
understand what she is trying to communicate.
"Facial expressions are very important," Hollen said, through her
interpreter, Susie McCoy. "The look on the face helps understand
the meaning."
There are also tricks of the language trade she is sharing during
Tuesday's weekly class. An example: When asking a yes-or-no
question, a signer will raise his or her eyebrows. When asking a
how-when-or-where question, the eyebrows will go down.
For McCoy, the role of interpreter is helped by Hollen's
expressive nature, her wide gestures that point students in the
right direction.
"She's so expressive, even though I'm her interpreter there are
times I'm not needed," McCoy said.
Hollen, a resident of Hedgesville, is teaching the 10-week class
largely to individuals who want to become sign interpreters. One
of them is Jane Sadler.
"I want to learn so I can sign at church," she said. "It's hard.
The older you are, the harder it is. Sometimes you just stop."
It's not just mentally challenging, but physically demanding as
well.
Even McCoy, who has extensive experience, said her hands will get
tired if she has to sign for extended periods of time.
"The hands are really an extension of your brain. The information
flows from your brain into your hands, so they do get tired," she
said.
The students are working with tow different types of sign
language: American Signed Language (ASL) and Signed English.
The two are really separate languages. Signed English is more
formal with each word where it would be if the sentence was
spoken aloud. ASL is more short-hand, with words rearranged and
omitted for speed. Articles "an," "the," and others are omitted
completely.
"ASL does not have the right grammar," McCoy said. "It's more of
a concept, more of a picture. It's the faster way for the deaf to
speak."
For example, the sentence, "There is food in the store" in Signed
English would be shortened to "It store have food" in ASL.
Like Spanish and French (but unlike spoken English), adjectives
come after the noun in ASL. "The black shoe" would be signed
"shoe black" in ASL.
Young children who are excellent mimics, a key to signing, can
pick up good parts of ASL as young as eight months.
In school they learn Signed English in order to understand the
grammar of books and other reading material.
"More and more teachers are using sign language in the
classroom." McCoy said.
When the young leave school, nearly all deaf people use the
faster ASL to communicate with one another.
How long it takes to become literate in sign language depends on
a number of factors, including enthusiasm, Hollen says.
"It really depends on the individual. If they intermingle with
deaf people, they will learn faster," she said.
Hollen has two children, a 9-year-old son and an 11-year-old
daughter. Both have normal hearing, but use sign language to
communicate with their parents.
Hollen says knowing the language has other benefits for her
children.
"Because my son signs, he has better eye contact. He knows you
have to pay attention," she said.
Hollen is a frequent visitor to her children's school, where she
teaches about sign language. She also teaches it at Winchester
Medical Center, where she works.
"Even my boss is interested," she said.
The members of the class, all women, agreed that ASL was more
enjoyable to use than Signed English.
Finding competent sign language interpreters throughout the
Eastern Panhandle has become more important since the
implementation of the Americans with Disabilities Act. The act
requires that employers provide "reasonable accommodation" for
their employees, which includes sign interpreters where
necessary.
Hollen said the law was a good start, but she still has problems
out in the community.
"I'd like to see more business offices, more doctors' offices,
and hospitals give better service to the deaf," she said.
Frequently, people expect Hollen's children to interpret for her,
which she said is unfair to them.
"I want my children to enjoy their childhood. It's hard on
children's emotions to have to do that, not fair to the child.
But because of the ADA, they won't have to do it anymore."
McCoy praised Ray Bennett, who heads the adult education program
for the county school system, for choosing a deaf instructor to
lead the class.
"That he saw to hire a deaf person, it just proves they can do
everything we can do, except hear," she said.
Local residents who need an interpreter can contact Deafnet at
(301) 791-9025 for assistance.
[Learning the Signs of Silence, Scott McCaffrey, Martinsburg
Journal, 10/13/93]
...For further information, contact CURE, 812 Stephen Street,
Berkeley Springs, West Virginia 25411 (304-258-LIFE/258-5433).
posted on:
ABLEnews...beyond the headlines. (1:262/4)
D: Disability Stereotypes
(248) Sun 21 Nov 93 11:19a
By: Dan Houser
To: All
Re: Disabled and Stereotypes Article, Columbus Dispatch.
Disabled Folks Face Stereotypes
That Deny Their Individuality
by
Deborah Kendrick
Reprinted from
The Columbus Dispatch
Sunday, November 21, 1993
Forum - Page 3B
One remark that quickly signals trouble for people with
disabilities is the direct or implied message that "I know all
about you because I knew someone else".
The "someone else", of course, is inevitably someone else who
was deaf, blind, in a wheelchair, used crutches, or had another
fill-in-the-blank disability that matches yours.
Sometimes, this sort of introduction turns out to be
innocuous, the beginning of a truly captivating tale, or merely a
reference point to clue you into the news that this person's
sensitivity is a touch above average.
All too often, however, it's a red-flag alert that you are
about to be compared with the previous acquaintance, and that
you, as someone sharing disability X, Y, or Z, are expected
either to be a replica of that first contact or to be found
wanting for your differences.
If, for example, you are deaf and use sign language as a
primary means of communication, you have perhaps been cast in the
undeserved role of second-class citizen by someone whose only
prior experience with deafness happens to have been with an
expert lip-reader who communicated orally. Measured against that
standard, you are perceived as inferior -- less gifted somehow.
But if the sign-language user is the first encounter, the measure
for all future expectations, and you read lips, the erroneous
conclusions might be reversed.
For wheelchair users, the basis for comparison might be one's
ability to drive a car or the preference not to, or the use of a
manual chair or a motorized one.
For blind people, inaccurate judgements are made regarding the
use of mobility aids. (Upon arriving at a meeting with my white
cane, I was once informed by a new acquaintance that her
neighbor's niece was "so intelligent that she is allowed to use
one of those trained dogs to get from place to place."
Accompanied by my guide dog on a separate occasion, I learned
from another new acquaintance that her blind friend back in
college was "so independent that he could use a cane.")
It can tap into your self-esteem if you let it. My own
approach is to try treating such pronouncements of inferiority
with a modicum of humor - and maybe grace. We're all only human,
after all, and if we're going to know someone longer than three
minutes, the important aspects of character will eventually
overshadow such things as the personal techniques chosen to face
daily challenges.
Otherwise, does it really matter if people don't always
understand that people with disabilities are not clones of one
another?
Three years have passed since the signing of the Americans with
Disabilities Act. Standards defining that law are still being
set, compromises among philosophies being made, and the issue of
individuality among us is perhaps clearer than ever.
There are 43 million Americans with disabilities. Of course,
43 million Americans don't all have the same abilities, opinions,
talents, needs or philosophies. Of course, not all deaf people
dance, not all blind people play the piano and not all wheelchair
users have enormous biceps. Even in regard to the ADA itself,
awareness among disabled people ranges from zealous memorization
of entire passages to uninformed complacency.
Yet, it seems to me that it is perhaps more critical now than
at any point in our history that all of us -- with and without
disabilities alike -- tune in to the genuine similarities and
differences among this most diverse minority.
In one meeting of experts hammering out prospective
accessibility standards, I hear a woman arguing that all public
rest-room stalls should be handicapped-accessible rather than
only one per facility. Elsewhere, another woman maintains that
every public place of business should have one single- user rest
room set aside for disabled folks. Similarly, the priority given
to such accommodations as Braille, audible traffic signals,
amplified telephones or large-print menus will vary according to
the needs of the individual asked.
Certainly, no large group of people can agree on everything.
While interest throughout the business sector is higher than ever
in learning to accommodate potential customers and employees who
have disabilities, advocates need to take time out to learn about
one another and assume the broadest view. Raising awareness, in
other words, should be one part education and at least one part
flexibility.
If you're the kind of person who resents being measured
against your boss's Aunt Mary (simply because both you and Aunt
Mary had polio), then you don't want to be the sort of person who
holds up your own needs or styles of doing things as the ultimate
absolute benchmark, either.
[Deborah Kendrick is a Cincinnati Writer who is blind and is a
nationally recognized advocate for people with disabilities.]
From the Sturge-Weber Foundation BBS, Columbus, Ohio (614) 899-9650
Serving Sturge-Weber Syndrome patients, their families, and the
disabled and medical community at large in Central Ohio. -Dan
Houser, SYSOP Sturge-Weber Foundation BBS
posted on:
Sturge-Weber Foundation BBS, 614-899-9633 (1:226/300)
(268) Tue 23 Nov 93 8:42a
By: Bob Sherman
To: Dan Houser
Re: DISABLED AND STEREOTYPES
DH> Disabled Folks Face Stereotypes
DH> That Deny Their Individuality
DH> by
DH> Deborah Kendrick
... Thanks for the post. Well written. Wouldn't mind more like
that.
posted on:
Del Ches Systems BBS - Exton,PA 215-363-6625 Since 1983 (1:273/323)
E: Hollywood Hard of Hearing
(250) Tue 23 Nov 93 10:35p
By: Earl Appleby
To: All
Re: Hollywood Hard of Hearing
ABLEnews Extra
No Date for Deaf on "Calendar"
New York The deaf actors who auditioned for the eye-catching if
minor role of Arturo Gallo in the new film comedy "Calendar Girl"
were accustomed to producer mood shifts. But the subtle change in
emphasis that eventually froze them out of the part was
especially infuriating and they discovered that the Silver Spring
(MD)-based National Association of the Deaf (NAD) was willing to
help them strike back.
Outrage over Columbia Pictures casting of the role which went to
a hearing actor after a national search for a deaf one has caused
deaf activists to put the film at the top of their list of
targets. Their campaign began here with a rally before a press
screening of the movie.
"Hearing producers think hearing actors can learn our language
[American Sign Language] in pre-production crash courses and
instantly become fluent enough to project realistic portrayals of
deaf people immersed in deaf culture," said Bobbie Beth Scoggins,
NAD media access chairwoman. "This ultimate insult to the
intelligence of deaf people proves continued Hollywood
discrimination exploits our valued life experiences."
There have been 338 US film and television characters who were
deaf or hard of hearing since 1913, according to a study by San
Francisco State University historian Paul K. Longmore, and only
128 of those parts went to deaf or hard-of-hearing actors.
Protesting over casting and scripts by racial minorities are not
new, but the disability rights movement, and particularly those
organizations that represent about 20 million deaf and hard-of-
hearing Americans, have been slow to tweak Hollywood for
perceived slights. The 22,000-member NAD has made "Calendar Girl"
a "national priority" and plans protests in several cities,
especially Washington, when the film opens.
All of which disturbs the "Calendar Girl" producers, whose
spokesman said they made a strenuous effort to find a deaf actor
for the part. At least a thousand actors were auditioned, and "we
even went so far as to have producers pay to have one hearing-
impaired actor flown from New York to [Los Angeles] to audition,
(Mark) Gill (a senior vice president at Columbia Pictures) said.
The characters Arturo and Antonio Gallo are comic hoodlums bill
collectors sent to track down the movie's star, Jason Priestly,
who in a story set in 1962 is seeking a date with Marilyn Monroe.
The Gallos are on the screen only about five minutes, Gill said,
but the roles provide a possibly career-establishing opportunity
for an unknown performer. So, deaf activists say, they were
devastated when Columbia, and executive producers Penny Marshall
and Elliott Abbott, decided none of the deaf prospects measured
up.
Gill said the producers hired a skilled sign language interpreter
to train the actor who won the role, Kurt Fuller. The interpreter
remained on the set to ensure that the portrayal was accurate and
did not put deaf people in a negative light, Gill said.
Slippery language changes by the producers suggests a fail of
nerve and imagination.
The first casting call had said the actor playing Arturo, the
smarter of the two brothers, "should be hearing-impaired, but
physically capable actors will also be considered." After the
first audition drew 15 deaf and hard-of-hearing actors and hordes
of others, the producers revised the description: "Actor need not
necessarily be deaf, but the role is a nonspeaking role."
Only one deaf actor and 16 hearing actors were called back for a
second audition. Fuller was chosen and given an instructor who
promised to make him "look good."
Longmore said: "Deaf leaders have likened the hiring of hearing
players to depict deaf people to having a white actor play an
African American by rubbing burnt cork on his or her face."
[ABLEnews Editor's Note: Ellipses omitted to facilitate reading.]
(Deaf Activists to Protest Exclusion from New Film, Jay Mathews,
Washington Post, August 26, 1993)
posted on:
ABLEnews: Justice Delayed = Justice Denied! (1:262/4)
F: Morally Disabled
(251) Tue 23 Nov 93 10:36p
By: Earl Appleby
To: All
Re: DC Disabled
ABLEnews Extra
DC Bureaucrats and Looters: The Morally Disabled
Joe Dewey Cheers, clutching his stuffed kitten, had successfully
positioned his motorized wheelchair between his pile of
belongings and the looters.
Cheers, 74, partly paralyzed by a stroke in 1985, had just been
evicted from his unit in a DC public housing complex for
nonpayment of rent, city officials said. He was more fortunate
than two other disabled people evicted along with him Wednesday
afternoon.
Harvey Lee Barnes, 40, and a 52-year-old woman were not home when
deputies from the US Marshals Service executed the eviction
orders and put their clothing and furniture on the street outside
the Arthur Capper Senior Dwellings.
There was no one to protect their possessions. Barnes, who lost
his leg 13 years ago, has been in DC General Hospital since
October 2, and the woman, who is paralyzed from the waist down,
has been held at the DC jail since September 16.
The curb in front of the housing complex, just north of the
Washington Navy Yard looked like a big sidewalk sale.
The television and stereo sets went first. Then the small pieces
of furniture and the appliances. One man tried to steal an entire
bed but the white metal frame was too heavy for him to carry.
Some residents of Arthur Capper yelled at the looters to stop,
and a few did, but one woman never lost stride.
"They knew they were being put out," she said as she scooped up a
brass lamp. "They had 30 days. They should have come to get the
stuff."
Though the Arthur Capper complex caters to older and disabled
tenants, city officials said there are no special procedures
governing the eviction of such tenants.
Claudia Booker, acting director of the DC Department of Public
and Assisted Housing, said the evicted woman owes the city $3,500
in back rent. Booker said Cheers owes $6,000 and that Barnes owes
more than $2,000.
"We contacted their relatives so they could come and get their
stuff," said Booker, who added that her staff also called Adult
Protective Services and several other social services to help
those evicted. "So we are not just throwing them on the streets."
A reporter could not find any family members or social service
assistants at the scene Wednesday.
Tom Meekins, an intake officer for the Adult Protective Services
unit of the Department of Human Services, said his agency did not
get a call from anyone from housing regarding the Arthur Capper
eviction. "Nobody called," said Meekins, who checked the phone
logs for Wednesday. "If they called, it would be in this book."
Both men protested their evictions. Cheers had been living in a
$298-a-month efficiency in a nine-story building at Arthur
Capper.
He said his troubles began in March, when his wife got sick.
"My wife had to have her leg amputated, and she didn't have any
insurance," Cheers said. "It exhausted all of my savings to get
her into a rehabilitation center."
Cheers remained outside his building until early Wednesday
evening when DC police took him to DC General Hospital, according
to a security guard at the dwellings. Cheers could not be reached
at the hospital yesterday.
"Each time I had to go to the court building, I was in the
hospital, and couldn't go," Barnes said yesterday from his bed at
DC General.
He said he lost his leg after he was shot. Barnes, who also
rented an efficiency, had lived at Arthur Capper for six years.
His monthly income is a $449 disability check.
"I don't have any place to go; I don't have anyone to turn to,"
Barnes said. "At least they could have waited until I got out of
the hospital. I guess I'll have to ride the streets."
[Evictions Bring Out Looters, Hamil Harris, Washington Post,
October 29, 1993]
posted on:
ABLEnews...Dare to care! (1:262/4)
(322) Thu 25 Nov 93 11:07a
By: Dennis James
To: Earl Appleby
Re: Re: DC Disabled
Hi Earl
> DC Bureaucrats and Looters: The Morally Disabled
> Joe Dewey Cheers, clutching his stuffed kitten, had successfully
> positioned his motorized wheelchair between his pile of
> belongings and the looters.
> afternoon.
> Harvey Lee Barnes, 40, and a 52-year-old woman were not home when
> orders and put their clothing and furniture on the street outside
> There was no one to protect their possessions. Barnes, who lost
> Washington Navy Yard looked like a big sidewalk sale.
> The television and stereo sets went first. Then the small pieces
> of furniture and the appliances. One man tried to steal an entire
> "They knew they were being put out," she said as she scooped up a
> brass lamp. "They had 30 days. They should have come to get the
Reading something like this has put me at a loss for words. It
strikes home more with me because I have been there. With a wife
and four kids. And placed out in 10 degree or so weather. The
loss of careing in society I think is much to blame. This type of
thing doesnt just happen to the disabled although it is more likely
to because of the income.
Cant say more at the moment.
Dennis
posted on:
Disability Hotline (1:387/590)
G: Nicole
(286) Tue 23 Nov 93 5:42p
By: Gordon Gillesby
To: All
Re: HELLO NICOLE COLUMN
Hello Nicole
Dear Readers,
Since I didn't get any letters this month I decided to write about
problems of my own.
I've been noticing lately how insignificant and inhuman I feel
because of my disability and lack of physical control. Usually I just
ignore the physical realities of my life as much as possible: I don't
think about how reliant I am upon my PCA, my power wheelchair, Metro
Mobility, the help of strangers, and so forth.
It's hard to feel like I have any real independence when I need
someone to take me to the bathroom, bathe me, dress me, cook for
me, clean for me, etc... My house begins to feel like it's not
really my house, but rather it's my PCA's house, since they're
the one taking care of it by doing all the physical labor. It
seems I have little impact or power over my surroundings. Even
if I give my PCA "instructions", they are still the ones who
carry out the actual tasks and therefore have ultimate control.
Sure I pay the rent, but it's money given to me, "unearned
income" from Social Security; it's not really my money.
This feeling that nothing is mine and that I have no impact or
power, even extends to my body. I notice that my appearance
changes according to who my PCA is; I end up looking a bit like
them. My hair ends up combed like theirs and my clothes arranged
like theirs. It seems inevitable despite my detailed
"instructions", they are each individuals and do things in their
own different way. Yet, all of this makes me wonder who I am. I
don't know my individual style-- if I were to wash and dress
myself how would I look? I feel as if my only identity is that
of a "handicapped person"; it's almost as though I were not a
"human being" but some other lesser species with little power,
even over myself.
The other day when I was walking (driving) down the street, I
became acutely aware of the way people were looking at me. I
noticed they seemed to stare at me, sometimes right into my eyes,
yet it was clear they still did not see me in the same way they
saw able-bodied people. When I said hello, some seemed shocked
and embarrassed, while others didn't respond at all.
One man that day winked at me. As always, I had to wonder if he
thought I was a pretty woman or was it just the pitiful
wheelchair person he felt obliged to wink at? I decided he was
just being charitable to me: a wheelchair person. After I
concluded this I realized that a large part of decision making
was due to my own feelings about myself: I hardly feel like a
"woman" at all.
I'm comfortable with "female" as a sort of factual, medical
identification. However, the title "woman" seems to hold too
much sexuality, too much humanness, too much impact in the world
and on others; having women alive is important, having
handicapped people alive is not. Even though women are devalued
in our society, it is nothing like the devaluation of the
disabled.
Since the day I realized how I felt about myself, I have tried to
become more of a "woman". Of course, somewhere inside me I know
that all of us people with disabilities are human and equal. But
still, when I wear make up, or dresses, it just seems a joke, all
I feel I've become is a dressed up handicapped person. I still
don't rate a "woman", and I don't feel comparable to any other
able bodied woman in the room.
The only place I feel where I belong is the hospital, or courage
center, or some other place that I despise, designated for
disabled people.
All of these feelings are deep emotions that are not touched by
the logical, philosophical thinking of the disability rights
movement, or any other reasonable thoughts. I wonder if anyone
reading this has ever experienced similar feelings (men or women,
as the "woman" problem could just as easily be a "man" problem).
I think that in the disability movement one of the greatest
things lacking is emotional support for those of us who feel
insecure with ourselves and with taking our power in the world.
I'd appreciate any comments, advice, or personal sharing from
you.
Hoping for Solidarity,
Nicole
[from Access Press, see below for further information]
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
(416) Tue 30 Nov 93 4:30p
By: Dave Thomas
To: Gordon Gillesby
Re: Hello Nicole Column
GG> Hello Nicole...
Hi Gordon, I really enjoyed reading your message... Well I
don't know if I really enjoyed it, rather, it got me to thinking.
I realized I've been feeling much the same way. I too am in a
power chair and I need someone to look after my personal care. I
try not to think about it too much because it sort of "bums me
out". But then again...not everyone can do everything. Just look
at hockey for example. The "goons" on the team rely on guys like
Wayne Gretzky to do all the scoring, while Wayne relies on the
"goons" to protect him and give him room to do his stuff. So we
just happen to rely a little more on others. But we can
contribute in other ways. And then others would rely on us.
Oh one more thing I've learned in my 19 years of wisdom,
(grin) don't worry too much about what others think. I found in
Jr. High and High School that most people will look at you and
come to a judgement on you...the way I over come this is to be
aggressive, make others know you for who you really are. Even
show off a little. Most people have told me they thought I was
weak, frail and innocent, but once they've talked to me and "seen
me in action" (grin) they changed their mind. People need to know
you. You have to get by the personal appearance thing. You can't
judge a book by it's cover. Well I'm afraid I'm not as good a
writer as you, but I just had to reply, I wish I could express
myself better, but I hope you get the idea I was trying to put
across.
-- Dave --
posted on:
The Shadow BBS, Port Alberni, BC Canada {604-723-7746} (1:3410/270)
H: Bias Against Obese
(346) Fri 26 Nov 93 1:46p
By: Warren King
To: All
Re: Job Discrimination of Obese People
Hello All!
From: VIRGINIAN-PILOT/LEDGER-STAR, Norfolk, VA
November 15, 1993
Job bias against obese woman is ruled illegal
In the first federal appeals decision of its kind, a three-judge
panel in Boston has ruled unanimously that job discrimination
against severely obese people violated a federal disabilities law.
The case was brought by Bonnie Cook, a 5-foot-2-inch, 320-pound
Rhode Island woman who was refused a job at a state center for
retarded people because of her weight.
Cook worked at the Ladd Center, a residential unit for retarded
people, from 1978 to 1980 and again from 1981 to 1986. Both times,
the court said, she left the job voluntarily, leaving behind a
spotless work record.
But in 1988, when she reapplied for the same job, the state
refused to hire her on the ground that her weight compromised her
ability to evacuate patients in an emergency and put her at greater
risk of developing serious ailments.
Cook sued, claiming that she was being discriminated against
because of a handicap, in violation of Section 504 of the
Rehabilitation Act of 1973. Last year, a jury awarded her $100,000
in compensatory damages, and the trial judge ordered the state to
reinstate Cook, who is now working as a $12-an-hour attendant at a
group home.
But the Rhode Island Department of Mental Health, Retardation and
Hospitals appealed the case, arguing that obesity should not be
covered by the law because it was caused by voluntary conduct.
Both at trial and in its appeal, the state argued that Cook was
not legally protected because she could lose weight at any time.
But the 1st U.S. Circuit Court of Appeals rejected that reasoning
Monday. The court opinion said that there was credible evidence
that the metabolic dysfunction causing weight gain in the extremely
obese lingered even after weight loss.
Regards,
Warren
posted on:
HandiNet B B S Virginia Beach, VA (804)496-3320 (1:275/429)
ABLEnews Resources is published by CURE Ltd. For further information,
contact CURE, 812 Stephen Street, Berkeley Springs, West Virginia
25411 (304-258-LIFE/258-5433).
Credits:
Access Press:
Articles from Access Press Newspaper may be reprinted with
attribution; letters and submissions are welcome. For more
information or to submit material for publication, please
contact:
ACCESS PRESS
3338 University Avenue S.E.
Minneapolis, Minnesota 55414.
612/379-0989 (voice)
612/379-2730 (FAX)
Futurity:
Articles from FUTURITY Newsletter may be reprinted with attribution;
letters and submissions are welcome. For more information or to
submit material for publication, please contact:
Roger Strand
Governor's Planning Council on Develomental Disabilities
Minnesota Department of Administration
300 Centennial Building
658 Cedar Street
St. Paul, MN 55155
612/296-9963
(236) Mon 22 Nov 93 9:38a
By: Earl Appleby
To: All
Re: Care??? Haven
ABLEnews Mail Bag
CURE believes that a just and caring society
would strive to enable every adult to live as
independently as possible in accordance with
his or her wishes. We strongly recommend that
any one who needs special care receive it
from his family IN his home if at all
possible. But we must not forsake those who
live in nursing homes or other institutions
to their fate thereby becoming accessories to
their abandonment.
Not a Place to End Our Days
To the Editor:
Those of us who become crippled with age and illness try to
select a compatible place to end our last days on earth. As
residents, we selected to come to Care Haven of Martinsburg. Edna
Renaud said, "I applied for admission and entered her on February
20, 1990 at the age of 90. Our room rate has increased steadily
over this time. but not the service. In March 1993 the room rate
became $80 per day. The food quality is not good and often poorly
prepared.
"Due to changes in my physical conditions, I now require more
personal care," said Edna Renaud.
The staff is often short-handed which puts a burden on the aides
who give us personal care. We continue to lose good nurses.
Activities are becoming nil and not very well planned. Our hours
and days here are long.
This is not a quiet and serene place to end our days.
These things we feel are important and need consideration.
Edna Renaud, Thomas Peck, Susan Whittington, Elizabeth Henretta,
Elsie, Needy, Leora Miller, John S. Beard, Helyn R. Jennings,
Burton Anderson, and Elsie Miller
Martinsburg, WV
[Change Is Needed for Care Haven Residents, Renaud et al.,
letter-editor, Martinsburg Journal, July 24, 1993]
...For further information, contact CURE, 812 Stephen Street,
Berkeley Springs, West Virginia 25411 (304-258-LIFE/258-5433).
posted on
ABLEnews...Dare to care! (1:262/4)
(285) Tue 23 Nov 93 5:39p
By: Gordon Gillesby
To: All
Re: MN RELAY ON STRIKE
Letter to the Editor:
To the Relay using community:
The Communication Assistants and Trainers at the Minnesota Relay
Service (MRS) came together, May 1, 1993 to form our own Local
union. We are affillated with AFSCME Council 14. The control of
the Union is solely with the membership of Communications
Assistants and Trainers.
We came together because we saw the quality of the Relay
suffering. Our comments and suggestions were ignored, and people
who disagreed publicly were singled out and intimidated. We
decided to exercise our right to bargain collectively.
Since the Union drive began, turnover of operators has
decreased. We have a new sense of ownership of our
responsibility to the communication impaired community.
However, our insensitive hearing managers no longer value our
contributions to the Relay. They have gone back on offers made
at the negotiating table and will not budge on most issues. We
think our managers do not care if the Deafness, Education and
Advocacy Foundation (D.E.A.F.) loses the contract for the M.R.S.
By continuing a careless approach to the service they jeopardize
community control of the Relay Service.
The communications assistants and the trainer's at the M.R.S.
are an intelligent and committed group of people. We are a
diverse group united by our dedication to the community we serve.
We are of all ages, single, married, straight, gay, sighted,
blind, of many races, colors, and religions. Our wages, however,
leave a family of four below the poverty line. There are
operators receiving WIC. There are operators on food stamps. We
deserve a living wage, and our management would deny us that
wage. That is why, regretfully, the CA/Trainer union on Saturday
October 9th has authorized, by a vote, to strike if management
won't give us a realistic proposal.
We serve the communication impaired community directly every day.
Many of us have for years, longer than current management.
Managers have displayed complete lack in understanding of, if not
contempt for, the customers. One example of this was a recent
incident which involved a serious breach of confidentiality
perpetuated by several managers and supervisors. Cooperation
between CA's and the DEAF management of the foundation was
necessary to put a stop to the practices which led to the breach.
Please support the Communication Assistants and Trainers who
hope and strive for the betterment of our service to our
customers. We want the Relay Service to remain in the hands of
the communication-impaired community. We want the management of
the Relay to have strong ties to the Deaf culture.
Sincerely, the negotiating communication assistants,
Matthew Alsander Betty LaSorella
Chris Cowen Abbie Robles
Kurt Errickson John Slade
Baya Clare, Union President Paul Stravinski,
Union Vice-President
This article is from Access Press Newspaper and may be reprinted
with attribution; letters and submissions are welcome. For more
information or to submit material for publication, please contact:
ACCESS PRESS
3338 University Avenue S.E.
Minneapolis, Minnesota 55414.
612/379-0989 (voice)
612/379-2730 (FAX)
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
ABLEnews Review is published by CURE Ltd. For further information,
contact CURE, 812 Stephen Street, Berkeley Springs, West Virginia
25411 (304-258-LIFE/258-5433).
(10) Fri 5 Nov 93 11:00a
By: Earl Appleby
To: Gordon Gillesby
Re: EDITORIAL SPECTERS
> "CHRONICLE" EDITORIAL RAISES SPECTER OF NAZISM AND FASCISM
With the growing cancer of involuntary nontreatment
(euphemistically called "rationing," your post on the
> June 8, 1993...Muskegon Chronicle... editorial entitled,
> Can the nation afford severely disabled care?
is one of the most important items you have ever taken time to
share with us, Gordon--and you know we appreciate every one. It
should be read and reflected upon.
Thanks so much for posting it and for all you do for our common
cause, my friend.
As ever,
Earl
posted on:
ABLEnews...counting on U for our s*ccess. (1:262/4)
(42) Sat 6 Nov 93 12:55a
By: Earl Appleby
To: All
Re: What IS the Story?
St: Local
ABLEnews Extra
What IS the Story?
Something bizarre is happening in Greenbrier County (West
Virginia). Either America's worst epidemic of tick-borne Lyme
disease is in progress--or scores of people are being charged
millions of dollars for needless treatment.
State medical officials have ignored this situation. Some
Greenbrier doctors--who aren't convinced that any Lyme cases
exit--warned state offices months ago, but the state did nothing.
This is outrageous.
At the center of controversy is an osteopathic family doctor who
is treating multitudes of Lyme patients--but didn't report the
cases to state authorities as required by law.
The cost to a single patient may be as high as $100,000. The
physician, Dr. Belinda Smith, says she has a financial
arrangement with a pharmaceutical firm providing the expensive
drugs, but she won't give details.
All this cries out for a state investigation. Now that this mess
has been exposed, state officials cannot continue to ignoring it.
Everyone involved needs to know whether the Lyme outbreak is real
or imaginary.
The patients themselves are convinced it's real, and they regard
Dr. Smith as a savior. They told reporter Schneider they had
suffered months or years of aches, dizziness, flu-like symptoms,
and exhaustion, which other doctors couldn't cure.
Then Smith diagnosed it as Lyme bacterial infection and out them
on massive doses of antibiotics administered through shunts
implanted in their arms or chests. Patients say they're better,
and some have formed Lyme support networks.
Several other Greenbrier physicians say they haven't found any
Lyme cases, and they're suspicious. One said they warned state
officials of "the strange medical antics that are happening in
this county." The president of Leckie Smokeless Coal Company said
his firm's health insurance plan has "spent over $200,000 in the
past year paying for Lyme treatments for five of our people or
their family members."
Action is needed. Gov. Gaston Caperton should order his health
officials to make an immediate inquiry to determine whether
Greenbrier County has an epidemic or a fantasy.
[State Needs to Get the Bugs Out of Lyme Disease Care, editorial,
The Charleston Gazette, reprinted in the Martinsburg Journal,
August 8, 1983]
...For further information, contact CURE, 812 Stephen Street,
Berkeley Springs, West Virginia 25411 (304-258-LIFE/258-5433).
posted on:
ABLEnews...for news and views. (1:262/4)
(70) Fri 5 Nov 93 3:27p
By: Patrick Ivey
To: ablenews
Re: Sorry
* Originally by Patrick Ivey, 1:356/3.21
* Originally to Les Lemke, 1:356/3
* Originally dated 5 Nov 1993, 15:25
I called Christie Canby today. She said they could not afford to
let the door open for potentialy 100s 0r 1000s of users at a low
or no cost access rate. She said they were going to look into a
finacial aid possibility for me. Mean while she recomended I
contact the Oregon State Library ( Ernest Perez ) about getting
what I want off of their system. (And I do mean their system)
I called Mr. Perez, But he is not avalible until next Monday or
Tuesday. (I got his answering machine) I left him a message about
accessing the state library. Then called the library again and
talked to some guy named Bill. ALL these people sound like they
are afraid we might find out something. Bill said the use of down
loadable material is for State Libraries and State Agencies only.
We can only get a look at their card lists of avalible books and
such on stock. Yah Hoo! I'll take a look and walk right up!
Christie Canby said most people want to access OLIS to get into
the Legislators meetings while they are in session. I told her I
was not interested it the live meetings but the bills and
measures that have been passed or written. She said I could get
some of that material through the State Library. When I told Bill
what she said he sounded like she had slapped him in the face.
I don't know what's going on in our resource areas in this state
and country when it comes to politics. But it makes me wonder
what the hell (excuse me) they mean by THE FREEDOM OF INFORMATION
ACT. It sounds just like it's looks and sounds an ACT.
Mom said she would not mind the $25 a month for the first hour.
But $5 dollars an hour after that gets her. I told her one hour a
month could get a lot of information (even at 2400 bauds) It's
the $25 sign up fee that gets me. Don't we pay them enough for
the services that are due to us? And to tell use the training and
manual are optional, Is like saying. You can play here if you
know what your doing, Or even if you don't. All this and we have
to pay long distance charges too. AAAAAAH!
I'll call Ernest Perez, Monday or Tuesday. And see if he gives me
the "Political Side Step Dance" and shuffles me off onto someone
else. Meanwhile I'll save a copy of this post to send to a few of
our Representatives (If there are any in this State).
Later Pat P.S. I'll Post this in C.U.R.E. and O.R.P.O.L.
posted on:
Pat's House - Coos Bay, OR USA (1:356/3.21)
(97) Sat 13 Nov 93 2:47a
By: Earl Appleby
To: Patrick Ivey
Re: Sorry
Hi, Pat!
Your post re OLIS was intriguing.
While the Vice President and other are touting the "information
highway," it seems that bureaucrats and others are determined to
restrict access to persons with disabilities per TAB SOP.
Yours for smashing barriers to freedom of information,
Earl
PS--Please keep us posted.
posted on:
ABLEnews: Justice Delayed = Justice Denied! (1:262/4)
(117) Tue 9 Nov 93 5:05p
By: Les Lemke
To: Patrick Ivey
Re: Sorry
Hello Patrick,
Patrick Ivey wrote in a message to ablenews:...
PI> I called Christie Canby today. She said they could not
PI> afford to let the door open for potentialy 100s 0r 1000s of
PI> users at a low or no cost access rate. She said they were
PI> going to look into a finacial aid possibility for me. Mean
PI> while she recomended I contact the Oregon State Library (
PI> Ernest Perez ) about getting what I want off of their
PI> system. (And I do mean their system)
This sounds to me like a another political crock.
What did she mean when she said:
"could not afford to let the door open for potentiall 100s or
1000s of users at a low or no cost access rate."
Oregon taxpayers ALREADY paid for the computer system.
Oregon taxpayers ALREADY are paying for personnal to man and do
maintanence on the computer.
Oregon taxpayers are ALREADY paying for personnal to input data
into the computer.
Why can't an 1-800 number be allocated for the disabled, the
senior citizens and those on low incomes.
NOW I'm torqued!
See next post!
Not upset at you, Pat....just watching my blood pressure go up
all of a sudden thinking about this political doublespeak!
Les
posted on:
Stargate Oregon - North Bend, Oregon USA (1:356/3.200)
(118) Tue 9 Nov 93 5:17p
By: Les Lemke
To: All Disabled, Senior Citizens
Re: We, in Oregon need your help!
To All & All Oregonians,
Here's the deal.
In Salem, Oregon our state government has a computer system called
OLIS. This computer system, or bbs, is open to the *PAYING* public.
What is OLIS?
That stands for: The Oregon Legislative Information System.
Now, this computer system * IS NOT * widely known about and for
obvious reasons I suspect. Do you think our Salemcrates want us
folks in Oregon to know about this system which carries
legislation - House and Senate bills - which has been passed into
law ?
So this is what I am proposing.... If any of you can write
letters or if any of you can dictate letters to others to write
for you, please put the pressure on the Salemcrates so that the
OLIS system is made available either on a LOW COST line or better
yet - via a toll free 1-800 Phone line - so the Disabled and/or
Senior Citizens of Oregon can gain access to this computer
system.
To tie into this OLIS system costs $25.00 a month and for that
$25.00 a month a person gets ONE HOUR of access PER MONTH.
Addition access is charged at a fee of $5.00 PER HOUR.
Now...for us who live some distance from Salem not only would we
have to pay the $25.00 per month PLUS an additional $5.00 PER
HOUR if we wanted to access this computer system more than ONE
HOUR a month we would also have to pay long distance phone
charges.
To top it all of they are running a 2400 baud modem on the thing.
Nice eh?
I'm not quite sure what is going on but I do know that hardly
anyone knows ( up till now hehe ) about this OLIS system...let
alone has access to it.
However, the computer system has indeed been set up so folks can
access it. Why its existence isn't being 'advertised' is unknown
to me.
The next message will have information regarding the OLIS system.
If you live in Oregon PLEASE WRITE. If you live outside of Oregon
PLEASE WRITE and help us out.
By charging this kind of fee the politicians in Salem are
indirectly cutting off those of us in Oregon who can't afford to
access this system.
Information regarding the OLIS system is in the next message.
Later....
Les
posted on:
Stargate Oregon - North Bend, Oregon USA (1:356/3.200)
(120) Tue 9 Nov 93 6:00p
By: Les Lemke
To: All
Re: OLIS & Personal Motives
Hello Folks,
Now, in the previous messages I have requested your help. This
help has been not only for myself but also so the disabled,
senior citizens and those on low income can access the
information which is on the Oregon OLIS system.
My system 1:356/3 and the Stargate Oregon BBS is the home of what is
called The Cure Network echo. [ABLEnews Editor's Note: The CURE
Network is NOT affiliated with CURE Ltd., the sponsor of
ABLEnews.]
The purpose of this echo is to let the folks in Oregon know about
House and Senate and/or House and Senate Joint resolutions. This
echo is also for the free exchange of information between
Oregonians regarding State, County or Local government
activities.
The purpose of this echo is to let the people of Oregon know the
FACTS of what is going on. We all know that the news on TV and
the newspaper media oftentimes print only opinions or bits and
pieces of legislation for the people to read.
We place the House and/or Senate bills in the Network whenever
possible for all to read. This way The People can read for
themselves what our state government is up to.
You see, I am a person who has faith in The People. I believe
that if The People of Oregon are presented with the FACTS then
they can make an informed and intelligent choice when they go to
the ballot box.
Also, and as a result of my interest and determination to see to
it that The People of Oregon be given the opportunity to SEE what
it is that is being passed into law in Salem, I want this
information source to become more accessable to everyone -
ESPECIALLY the disabled, the elderly and the poor.
I am by no means rich. Like others, this "FEE" which is being
charged in order for folks to gain access to this information via
the OLIS system - along with the long distance charges involved -
also places me outside of the system.
From where I stand this situation is not right.
From where I stand in looking at folks who have disabilites
and/or are retired or poor this situation is TOTALLY
unacceptable.
If you have a chance write to Salem. Tell them your thoughts on
this matter.
Thank you for reading this.
Les
posted on:
Stargate Oregon - North Bend, Oregon USA (1:356/3.200)
(193) Wed 17 Nov 93 5:43a Rcvd: Sat 20 Nov 12:58a
By: Les Lemke
To: Earl Appleby
Re: Testing
Hi Earl,
Earl Appleby wrote in a message to Les Lemke:
EA> Thanks for the update. I appreciate your fight-back spirit,
EA> my friend. If folks who care don't dare, our Nation is down
EA> the tubes IMHO.
I tend to think what you just said is more TRUTH than opinion.
EA> Keep us posted on OLIS. (Did you see my message to Pat?)
Yup! Shore Did!
EA> Thanks for being part of this link of caring people we call
EA> ABLEnews!
I too am glad to be here.
Hopefully Pat will have some good news regarding "handicapped"
access to OLIS in the near future.
Plus MORE info on that subject...but then...I don't want to count
the chickens before they're hatched....
Now..as far as OLIS is concerned I...or rather Mabel Royce
did bring back two copies of the OLIS Access Policy... That
policy is basically five 8 x 11 pages stapled together.
I will post those pages for all to have on record.
Also..anyone may file request or download off the BBS a file
called OLIS.ZIP This contains all 5 of the pages of that
policy.
More info in a min...
Later....
Les
posted on:
Les's House - North Bend, Oregon USA (1:356/3)
(230) Wed 17 Nov 93 8:16p
By: Patrick Ivey
To: ALL
Re: Access to State Computers
Lately I have been trying to get access to State computers that
should but are not avalible to the public due to cost or red
tape. They make it sound as though they are there for our use.
But when you run into the cost at a low income level (Poor or
Disabled) You find out that they are not so accessible. I have
even been told to apply for state aid to meet the cost. As thogh
it was'nt the same pocket they were reaching into. Ours. The next
two post should give you an idea what I have ran into in this
matter. I will give further information to you as things
progress. Please read and forward as you please.
Thank you; Pat Ivey
posted on:
Pat's House - Coos Bay, OR USA (1:356/3.21)
(231) Wed 17 Nov 93 8:22p
By: Patrick Ivey
To: ALL
Re: Access to State computers 1 of 3
I called Christie Canby today... [ABLEnews Editor's Note:
See message 70 above.]
(232) Wed 17 Nov 93 8:24p
By: Patrick Ivey
To: ALL
Re: Access to State computers 2 of 3
November 15, 1993
Patrick G.Ivey
3261 Dallaire ct.
Coos Bay, Oregon 97420
Oregon Legislative Information System
Christie Canby
Information services Manager
S-424 State Capitol Building
Salem, Oregon 97310
Dear Christie,
I am writing to you to formally request authorization to access
the OLIS files via my computer modem. I am handicapped and
wheelchair bound. I live with my mother, who is legally blind.
I request that the fees be waived as per ORS 192.440 (4),
because the waiver of the fees is in the best interest of the
general public. I belong to a computer network exchange that
includes many handicaped People. The computer is the only
link that some of us have to learn about what is happening in
our government.
I would like to point out that the cost to supply us with this
service is a lot cheaper than the costs to print and mail me
a copy of every Bill that was presented this year and last year
in the Legislature.
It is my right as a citizen to request this access, and your
duty as a public servant to supply this information. I refer
you to ORS 192.420 to 192.505, which follow.
ORS 192.420 thru 192.470 explains the right to inspect public
records.
ORS 192.420 RIGHT TO INSPECT PUBLIC RECORDS. Every person has a
right to inspect any public record of any public body in
this state, except as otherwise expressly prohibited by ORS
192.501 to 192.505.
ORS 192.440 CERTIFIED COPIES OF PUBLIC RECORDS; FEES; WAIVER OR
REDUCTION.
(1) The custodian of any public record which a person has a
right to inspect shall give the person, on demand, a
certified COPY OF IT, IF THE RECORD IS OF A NATURE
PERMITTING SUCH COPYING, OR FURNISH REASONABLE
OPPORTUNITY TO INSPECT OR COPY.
(2) If the public record is maintained in a machine readable or
electronic form, the custodian shall provide copies of the
public record in the FORM REQUESTED, if available. If the
public record is not available in the form requested, it
shall be made available in the form which it is maintained.
(3) The public body may establish fees REASONABLY calculated to
reimburse it for its actual cost in making such records
available including costs for summarizing, compiling or
tailoring such record, either in organization or media,
to meet the persons request.*
(4) The custodian of any public record may furnish copies
WITHOUT CHARGE or at a substantially reduced fee if the
custodian determines that the waiver or reduction of
fees is in the public interest because making the record
available primarily benefits the general public.
*(5) A person who believes there has been AN UNREASONABLE DENIAL
OF FEE WAIVER or fee reduction may petition the Attorney
General or the district attorney in the same mannor as
when a person petitions when inspection of public records
is denied under ORS 192.410 to 192.505
If I don't get access and the fees waived I will file a petition
with the Attorney General.
As a matter of record. My montly income is $185 S.S. $269 S.S.I.
The State of Oregon pays $804 for Adult Foster Care. I after
paying bills, I end up with $100 for my personal needs. Hardly
enough to access a computer called OLIS that I have already
payed for, And pay to upkeep and maintain for my benefit.
Please note;
$25.00 Initial connect fee per user.
$30.00 Training per person,(includes manual) and is added
for each additional manual.
$20.00 Monthly availability covering the cost of (billing).
$ 5.00 For each hour.
Long distance Evening rate .18 cents per minute
Night rate .12 cents
Day rate .24 cents
This means I could be charged up to $19.40 Per hour to access
OLIS. Plus the monthly fee. I find this unfair for the poor and
others with a limited income or lack of ability or access to the
Salem area. And considering that it would cost the State far
more if I were to send to Salem to have the information printed
on paper and sent to me. It just don't make sense.
I hope you will help in this quest to access the OLIS for the
handicaped.
Thank you for your prompt assistance,
Sincerely,
Patrick G. Ivey
1-503-888-5979
posted on:
Pat's House - Coos Bay, OR USA (1:356/3.21)
(233) Wed 17 Nov 93 8:27p
By: Patrick Ivey
To: ALL
Re: Access to State computers 3 of 3
Developmental Disablities Council
Russ Gurley, Executive Director,
Mary Ann Seaton, Chairperson,
540 24th Place NE
Salem, Oregon 97301
Dear People;
My name is Patrick Ivey. I live in Coos Bay, Oregon. And am
a C-5 C-6 Quadraplegic (If I spelled that right) I have been in
a wheelchair for over 20 years (1973) and have recently
become an active member of the computer mail world.
It has come to my attention that many of the disabled or
abled are not aware of their rights in many areas of life in
these United States. It is my desire to make or help them become
more informed of these rights.
I have recently come into contact with hundreds and even
thousands of the disabled through a computer system called Echo
Mail. Where people can talk to each other on a state, nation or
even a world wide level. Three of these Echos are for the
Blind (Blindtalk) Disabled (Abled) and Political minded
(AbleNews) echos. In this form of communication a great number of
people can be reached. Such communications as these are echoed
threw many other computer systems, That can also inform the
public of the needs and rights of the disabled and also those
who are not.
The computer that I have, has a limited amount of memeory.
(About 20 mega bytes of memory space.) But I am more than glad to
offer its abilities to this meet this goal as best I can.
So to the point. I was wondering what information you could
give me on this matter. So I also can be better informed to do
this work.
As of now, I have been trying to get access to the State Library
Computer and to the Oregon Legislative Information System (OLIS).
But they seem to want an arm and leg to pay for that right. I
have sent a formal request to have access to the OLIS system.
And because of my income have such fees waived. But no answer as
of yet. The State Library informed me that it's system is for
other Libraries and State Agencies use only. And so I find myself
coming to you. In hopes that we might inprove the odds in
the quest to better the lives of all people, With knowledge.
Please write me and let me know what you have to offer in any
way. Any help at all will be gladly recieved.
Thank You.
Patrick G. Ivey
3261 Dallaire ct.
Coos Bay, Oregon 97420
1-503-888-5979
posted on:
Pat's House - Coos Bay, OR USA (1:356/3.21)
(244) Fri 19 Nov 93 9:58a Rcvd: Tue 23 Nov 1:56p
By: Patrick Ivey
To: Earl Appleby
Re: Hope
St: Rcvd
> Hi, Pat!
> Your post re OLIS was intriguing.
> While the Vice President and other are touting the "information
> highway," it seems that bureaucrats and others are determined to
> restrict access to persons with disabilities per TAB SOP.
> Yours for smashing barriers to freedom of information,
> Earl
> PS--Please keep us posted.
Things are quite here as of now. But that the goverment for you.
They are likey thinking things over, tosee if they can find a way
out without being hung. <G> Will keep you posted.
Pat
posted on:
Pat's House - Coos Bay, OR USA (1:356/3.21)
(247) Sat 20 Nov 93 4:01p
By: Marc Pelchat
To: Patrick Ivey
Re: ACCESS TO STATE COMPUTERS
Good luck Pat! Keep it up--knowledge that effects all of us,
especially in areas of key decision making like law and
government, should be freely available to all, and not hoarded
like pirate's treasure. If you encounter resistance, it means
you're making progress.
posted on:
AmNet Denver Node (303) 264-2257 Since 1984 (1:104/536)
(258) Mon 22 Nov 93 8:24a Rcvd: Tue 23 Nov 10:54p
By: Robert Thurlow
To: Earl Appleby
Re: Sorry
Earl Appleby wrote in a message to Patrick Ivey:
EA> While the Vice President and other are touting the
EA> "information highway," it seems that bureaucrats and others
EA> are determined to restrict access to persons with
EA> disabilities per TAB SOP.
I think this misrepresents what is going on in a very significant
manner.
Look at the facts: a special-purpose computer system was installed
by bureaucrats to service the Oregon public library system. They
clearly did NOT plan on allowing the public to access it, and are
now worried that it will "melt" under the load of general public
access. They may well be right in that it could impair access by
the libraries. Patrick can already access the system if he pays the
same fee as a TAB; the issue to me is why anyone should have to pay
a fee for information that is so important to democracy.
They made their mistake in not thinking that it would be a
generally good thing to allow free access to the system by anyone
who wanted to use it. That's common as "cyberspace" spreads,
unfortunately. I want to see all kinds of stuff available
electronically, and applying the constant pressure and educating as
we go is the only way to do that. But though I think the disabled
have a special stake in that battle, I don't think that it is ONLY
a disability issue; the coalition is a lot broader! And I don't
think it helps to portray this as "massa done it to us again" -
that just seems an unhelpful oversimplification.
I'm sorry for the tone, but I _hate_ sound bite politics.
Rob T
posted on:
Nat'l Amputee Connection, Dallas TX (214)447-0219 (1:124/5109)
(261) Thu 25 Nov 93 10:40a
By: Earl Appleby
To: Robert Thurlow
Re: Sorry...Not
Rob,
Thanks for your candid and--as usual--cogent comments.
I think your basic point is well taken ...if a tad exaggerated
(i.e., if the fellow whose original post seems--on reflection--more
than a tad exaggerated may say so <g>).
If I may share those reflections (for which I thank you for
inspiring), I believe that:
Discrimination against persons with disabilities permeates our
society.
Any issue that affects our disability community IS a disability
issue.
All disability issues should have a broader constituency than
persons with disabilities. After all I helped found CURE before my
accident <s>.
You are right, Rob, to point out that access to this sort of public
information transcends the interests of persons with disabilities
and should not be reduced in scope as my admittedly off-handed
comment did. (I must confess that I edit ABLEnews items not my
personal replies to friends like Pat or you <g>.)
So I would call OLIS: a freedom of information battle in which Pat
is fighting on the side of the American citizen whose disability
often lies in not being heard by our governing elites...IMHO, of
course <g>.
Thanks again for a well-deserved corrective. That is what friends
are far and I'm sure glad you are mine!
Earl
posted on:
ABLEnews...your comments are welcome here. (1:262/4)
(269) Sun 21 Nov 93 8:55a
By: Gail Hitson
To: Patrick Ivey
Re: Access to State computers 1 of 3
> I don't know what's going on in our resource areas in this state
and country when it comes to politics. But it makes me wonder what
the he!! (excuse me) they mean by THE FREEDOM OF INFORMATION ACT.
It sounds just like it's looks and sounds an ACT.
Yes, it's the same in a lot of states. As long as no one questions
them, they will continue to make free access difficult, if not
impossible.
> Mom said she would not mind the $25 a month for the first hour. But
$5 dollars an hour after that gets her. I told her one hour a month
could get a lot of information (even at 2400 bauds) It's the $25
sign up fee that gets me. Don't we pay them enough for the services
that are due to us? And to tell use the training and manual are
optional, Is like saying. You can play here if you know what your
doing, Or even if you don't. All this and we have to pay long
distance charges too. AAAAAAH!
If you are going to take on this project, please consider trying to
get donations to upgrade to a high speed modem first. The reason I
mention this, is experience. You can purchase an infotel high
speed modem (14.4) now for around $130 (internal and guaranteed for
ten years). If you sell your old one for about $25 to $30, you can
get away with investing around $100 to $110. You will find that
your cost for downloading will decrease so significantly, that the
modem will pay for itself. I discovered this hard way after
starting a new conference and sending it to other boards. The cost
for one month would more than pay for a high speed modem. If you
think about it.....let's see $5.00 an hour for a 2400 is equivalent
to 10 minutes or lesss than a dollar for a reliable 14.4 high speed
modem. Good luck with this project!
> I'll call Ernest Perez, Monday or Tuesday. And see if he gives me
the "Political Side Step Dance" and shuffles me off onto someone
else. Meanwhile I'll save a copy of this post to send to a few of
our Representatives (If there are any in this State).
Good idea!
Gail Hitson
posted on:
Origin: ----------[ LifeLine (904)276-4724 ]----------- (1:112/73)
(270) Sun 21 Nov 93 8:59a
By: Gail Hitson
To: Patrick Ivey
Re: Access to State computers 2 of 3
...
> Dear Christie,
I am writing to you to formally request authorization to access
the OLIS files via my computer modem. I am handicapped and
wheelchair bound. I live with my mother, who is legally blind.
...
Hi Patrick,
This might be an interesting letter to the editors of some good
state newspapers....also might generate a story or two! Your state
representatives would also probably go to bat for you if you send
copies to them with a letter requesting their assitance. Go public
with this!
Hang in there,
Gail Hitson
posted on:
Origin: ----------[ LifeLine (904)276-4724 ]----------- (1:112/73)
(351) Fri 26 Nov 93 2:55p
By: Patrick Ivey
To: Gail Hitson
Re: Access to State computers
>> they mean by THE FREEDOM OF INFORMATION ACT. It sounds
>> just like it's looks and
>> sounds an ACT.
> Yes, it's the same in a lot of states. As long as no one
> questions them, they will continue to make free access
> difficult, if not impossible.
So far the have'nt answered the last letter I sent. So I guess I'll
have to send one higher up.
> If you are going to take on this project, please consider trying
> to get donations to upgrade to a high speed modem first. The
Good idea. I'll have to fire off a couple letters to see if I can
get some help. It might be slow, But it will be worth while. Thanks
for the idea.
Pat
posted on:
Pat's House - Coos Bay, OR USA (1:356/3.21)
(352) Fri 26 Nov 93 3:05p
By: Patrick Ivey
To: Gail Hitson
Re: Access to State computers
> Hi Patrick,
> This might be an interesting letter to the editors of some good
> state newspapers....also might generate a story or two! Your
> state representatives would also probably go to bat for you if
> you send copies to them with a letter requesting their
> assitance. Go public with this!
> Hang in there,
> Gail Hitson
Thanks Gail. I'll do that. If the state won't listen to one. Maybe
we'll have to gang up on them.(Usually do, Huh?)
It's nice to here more people are interested in this. It's like you
said last time. If we don't ask, They won't tell.
Will keep you posted. Hopefully soon.
Pat
posted on:
Pat's House - Coos Bay, OR USA (1:356/3.21)
(51) Thu 4 Nov 93 8:43p
By: Dan Houser
To: All
Re: Sturge-Weber Syndrome.... What is it?
An original work by Dan Houser, SYSOP of the Sturge-Weber
Foundation BBS, and father of a SWS patient.
What is Sturge-Weber syndrome?
Sturge-Weber syndrome is a rare syndrome caused primarily from a
port-wine stain birthmark on or around the face. Sturge-Weber
is a syndrome rather than a disease, because it is a collection
of characteristic ailments. Primarily, these are primarily
seizures, glaucoma, motor skill dysfunction, mental retardation,
and brain calcification. One or more of the symptoms will usually
manifest itself within the first 1-3 years of life, though
children as old as adolescents have suddenly shown symptoms.
Because Sturge-Weber is a syndrome, and not a disease, each
patient is different, with different symptoms of differing
severity.
Sturge-Weber syndrome was first diagnosed in the late 19th
century by doctors Sturge and Weber. There is no known cure for
Sturge-Weber syndrome, and there appears to be no genetic link to
the syndrome. Sturge-Weber also does not appear to be event
related (such as drug abuse or an injury during pregnancy). From
what we know, the syndrome occurs randomly, with an incidence of
approximately 1 in 250,000 births. Because of its rarity, there
is very little funding available for Sturge-Weber research.
Because of this lack of funds, there has never been any research
on the cause of Sturge-Weber syndrome, just clinical studies.
When performing research in a typical medical university library,
you will be fortunate to find a handful of references to it, but
most of this is redundant. Sturge-Weber is classified as an
"orphan disease" or "orphan illness", because it lacks the
endowments and funding of more common illnesses, such as Multiple
Sclerosis and AIDS.
For most people newly introduced to Sturge-Weber, the most common
question is "all this is caused by a birthmark??" Well,
surprisingly, yes! Though there are documented cases of
Sturge-Weber patients having no birthmark of any kind, and many
more cases of people with port-wine stain birthmarks who don't
have Sturge-Weber, the link is a very strong one. SIMPLISTIC
EXPLANATION: The birthmark is not just on the surface of the
skin, but penetrates through the skin to the surface of the
brain. The birthmark is caused by nerves in the face attracting
red blood cells. The pooling of red blood cells on the surface of
the brain causes abnormal blood flow in the brain. This in turn
causes portions of the brain to become oxygen-starved and
atrophy. The same high concentration of blood cells in the face
can also affect the eyes, causing glaucoma. Please understand,
the above is overly simplified, but essentially correct.
Because every Sturge-Weber patient is different, and every
birthmark is different in shape, area, and intensity, the effects
are varied. Some may have mild to severe seizures, or impairment
of fine or large-motor skills. Others with Sturge-Weber syndrome
may have speech problems. Once again, every child is different,
and may be multiple challenged. Most impairments and conditions
caused by Sturge-Weber are treatable through medication, therapy,
surgery, and other techniques. Most symptoms cannot be cured.
Dan Houser, SWF Conference Moderator
P.S. - If you know anyone with a Port Wine Stain Birthmark, please
give them the number of this BBS: 614-899-9650,
or the Sturge-Weber Foundation: 1-800-627-5482
>Dan
>Sysop of Sturge-Weber Foundation BBS
posted on:
Sturge-Weber Foundation BBS, 614-899-9633 (1:226/300)
(77) Sun 7 Nov 93 11:29p
By: Dan Houser
To: All
Re: Headaches, Especially Concerning Sturge-Weber Syndrome Patients
November 7, 1993 Sturge-Weber Foundation BBS,
Columbus, Ohio
HEADACHE.001
614-899-9650
Headache and the Sturge-Weber Syndrome
Reprinted, with permission, from
The Sturge-Weber Foundation Newsletter
Volume 4, Number 3, Fall 1991, page 3
by
John Bodensteiner, M.D.
Neurology Department, West Virigina University
HEADACHES!! We all have them, or at least almost all of us
have them, but it seems that for some people with Sturge-Weber
Syndrome (SWS) headaches are more of a problem than normal.
That was the impression I got from talking to the people
attending the SWS conference in Pittsburgh in August 1990.
Actually, the data required to ascertain the frequency and
severity of headaches in patients with SWS is not available.
In the near future there will be attempts made to remedy the
situation; a survey of the Sturge-Weber Foundation members is
being developed and should be distributed shortly. However, in
the meantime I will take this opportunity to discuss some of
the possible explanations for why headaches in patients with
SWS might be more severe than in the general population.
Headache is the most common symptom that is usually considered
neurological in nature. In any given year nearly 20% of the
entire population of the United States (over 40 million
people) complains to their physician about headaches. There
are several different tyupes of headaches which can be
recognized, these include: 1) Vascular headaches (migraine
and its variants) where the pain may originate from the wall
of the cerebral artery. These would include hypertensive
headaches as well as blood vessel spasm triggered by toxins,
allergens, etc.; 2) Traction/inflammation headaches, where
the pain is the result of pressure on or irritation of the
dense fibrous structures covering the brain (dura and
periosteum). These are the type of headaches experienced by
individuals with increased intracranial pressure as well as
people with infections of the structures of the skull, the
blood vessels or the meningeal sheath of the brain; 3)
Tension/ muscle contraction headaches, where the pain arises
from the muscular and fibrous structures of the scalp. These
are the type of headaches which are experienced when people
are anxious or depressed and can be every bit as difficult to
manage as any other type.
There are features of SWS which might predispose these
individuals to have each of these types of headache. First,
since the lesion on the brain is vascular in nature one might
think vascular headaches would be the norm. Indeed this is a
common type of pain, however, the venous angioma could
predispose to headaches in a variety of ways. The lesion might
leak small amounts of blood, irritating the meninges and
producing considerable pain. Larger leaks or ruptures of the
angioma could also offend but this fortunately is probably
very rare. The angioma could produce vasospasm (spasm of the
cerebral blood vessels) by altering the cerebral blood flow
dynamics. This mechanism could certainly cause an alteration
of the intracranial pressure as well.
For reasons which are not clear, arterial venous malformations
often produce headache as a warning sign of rupture or
thrombosis, this could presumably also happen in the venous
angioma of SWS. I think is is more likely that the angioma
would produce headache as as result of ischemia (either acute
of chronic) of the underlying brain. Small strokes resulting
from thromboses within the angioma might precipitate headache,
in other clinical settings strokes are known to be
occasionally associated with headaches. A prominent symptom
of chronic ischemia is headache.
Headache resulting from seizures associated with the lesion of
SWS as a postictal phenomenon represents another possible
mechanism. In fact, the seizure causing the headache would
not necessarily have motor manifestations (electrical seizure
only) making recognition of the event very difficult.
As if these proposed mechanisms were not enough, it would seem
plausible that some patients with SWS might be more prone to
anxiety or situational depression due to difficulty with self
image, a situation commonly resulting in psychosomatic
problems of which headache is one frequent manifestation.
Finally, one must remember that glaucoma can produce headache
as well as eye pain and could be an additional contributor
here.
This is all hypothesis of course. None of these mechanisms
has been shown to be operative in patients with SWS. I am
optimistic that with careful study, at least some of these
possibilities can be discarded and perhaps other possibilities
will emerge. It is probably true however, that unless or
until we look at the problem in a thorough scientific fashion
the answers will likely elude us.
For further information about the Sturge-Weber Foundation, or for
information of any kind related to Sturge-Weber Syndrome, please
contact:
The Sturge-Weber Foundation
P.O. Box 460931
Aurora, CO 80046
(303) 360-7290
or contact:
The Sturge-Weber Foundation BBS
P.O. Box 292403
Columbus, OH 43229
614-899-9650 24 hours a day, 14.4Kbps connection V.32b/V.42b
8-N-1
>Dan
>Sysop of Sturge-Weber Foundation BBS
posted on:
Sturge-Weber Foundation BBS, 614-899-9633 (1:226/300)
(122) Wed 10 Nov 93 7:36p
By: Peter Camiel
To: Dan Houser
Re: Re: Sturge-Weber Syndrome.... What is it
Hello, Dan!
I have a similar condition which has been diagnosed as
Klippel-Weber-Trenaunay Syndrome. It consists of the port wine
stains and 'birthmarks' on my feet, legs, hips, and left side of
my upper body. These are connected to my veins, and, if banged,
tend to bleed. My cardiovascular system is screwy: my veins are
like tangled spaghetti. My lymphatic system is also a mess, and
I have to have my legs and feet wrapped up during the day to
prevent further swelling. My immune system is compromised at
times as well. Many times I have been hospitalized due to
infections which could have been prevented with a normal
CV/immune system, but the germs 'hid' in some small, out of the
way vessels. It eventually got to the point where I had to
withdraw from High School and get my GED.
BTW, this condition was originally diagnosed as 'lymphatic
hemangioma' by my original doctor/surgeon, C. Everett Koop, at
Children's Hospital of Phila.
Other than this, I am able to function normally. I am now in my
second year of college, maintaining a 3.7+ GPA, and am in Phi
Theta Kappa. I try not to let it get to me, but sometimes it is
a living hell. I had a brain scan once to measure my pain
levels, and they were off the normal scale. It used to be that
some days I wouldn't get out of bed, but I've learned to control
it for the most part.
If you have any information which you could post here, or send to
me via Netmail, I would greatly appreciate it. Thank you!
Oh, another BTW, my condition is treatable by laser and standard
reconstructive surgery.
Thanks again!
Peter Camiel
SysOp - The Big Bang Burger Barn II BBS
2400-14400 baud
1:273/725.0 - FidoNet
Peter.Camiel.f725.n273.z1.fidonet.org
posted on:
The Big Bang Burger Barn II - 14.4 - 215/666-6909
(113) Tue 9 Nov 93 5:59a
By: Gordon Gillesby
To: All
Re: story of success
A Story of Success!
Marta Susag is an included member of her school community.
Marta is doing things we never though possible seven years ago.
Through parent training and empowerment we were able to dream and
have visions for Marta, and then create supports to realize our
dreams. Marta is in 5th grade in her home school. She uses a
management aide to use facilitated communication. Because of
this, she is doing fifth grade work. She is riding the regular
bus with her brother and a bus aide.
She made her first communion. She is raising rabbits, and is a
member of the Miesville Marigolds 4-H Club. She is funny,
loving, and smart. She is happy. We've come a long way, and the
story of success will continue! We are happy--which we weren't
in 1986! Contributed by Rebecca Susag (Marta's Mom)
[from Futurity, for further information see below]
posted on:
DRAGnet - Disability Information 612/753-1943
(115) Tue 9 Nov 93 8:46a
By: Beth Hatch-alleyne
To: All
Re: Swimmer
SAN PEDRO, Calif. (AP) -- Cheers and honks greeted a legless man
who swam 2 1/2 miles to raise money for charity.
About 50 people met 21-year-old Carlos Costa of Toronto as he
came ashore Sunday night after his 15-hour swim from Catalina
Island. Nearby boats honked their horns in encouragement.
"He never slowed down. He was swimming strongly the entire way,"
said Bill Petrasich, who accompanied Costa in a boat.
Every 1 1/2 hours, Costa drank a nutrition drink through a long
tube attach to a plastic bottle held by his coach, Vicki Keith, who
holds 14 world marathon swimming records.
"He can't ever stop treading water with his hands," Petrasich
said. "No one ever touches him or the swim wouldn't count."
Costa's legs were amputated when he was 2 1/2 years old because
a birth defect led to improper bone growth, Petrasich said.
Costa's swim through calm 67-degree water benefited Variety
Children's Charities of Southern California.
posted on:
Wit's End BBS (1:2613/176)
(116) Tue 9 Nov 93 4:41p
By: Les Lemke
To: All
Re: Info for Senior Citizens
Hello Folks,
Well, I suppose this information fits in this echo.
I saw this article in the June 24, 1991 issue of Newsweek.
It was just a small article in the upper right hand corner of the
magazine which I just happend to come across one day as I was
browsing through some old magazines.
WASHINGTON FAX
More than 2 million low-income senior citizens are being
short- changed $29.90 a month on social-security benefits,
says a report by the Families United for Senior Action
Foundation. The federal government deducts Medicare premiums
from the checks of elderly people with incomes under $6,620 a
year despite legislation passed last year providing for
Medicaid to pay those premiums. The elderly need to be told
to apply, but "no one has notified them that the benefit
exists," says Families USA executive director Andrew Pollack.
After reading this I took my mother down to the Senior Disabled
Services and asked for "the forms" necessary so my mother would
not have to pay this money every month.
The guy in the office looked COMPLETELY shocked. I don't
know....but from his reaction it would appear that either I was
the first one to ask for the forms for a "senior" or I was one of
the very few.
As I said in the beginning of this message ... I suppose this
information fits in this echo.
Well, we all get older as the years and the mileage adds
up....and as a result of this we ALL end up being what is
otherwise known as "disabled" to one degree or another - it's
only a matter of time.
In any event...although this information is somewhat dated I hope
it does someone some good.
Later....
Les
posted on:
Stargate Oregon - North Bend, Oregon USA (1:356/3.200)
(182) Tue 16 Nov 93 12:27p
By: Gordon Gillesby
To: All
Re: ABUSE HIGHER FOR C/W DISABILITIES
Abuse, Neglect Higher for Children with Disabilities;
Families Need Support
"Children with disabilities are abused and neglected far more
frequently than other children," was a conclusion reached in a
recent federal study conducted by the National Center on Child
Abuse and Neglect. This is the first nationwide look at the
extent of maltreatment among children with a physical, mental, or
emotional disability.
Researchers found that children with disabilities are physically
abused at twice the rate of other children, sexually abused a
nearly twice the rate, and emotionally neglected at almost three
times the rate.
The report underscores both the "tremendous economic and social
pressures that are crushing" many families and the need to help
them," said Senator Christopher Dodd, (D-Connecticut), who
sponsored the 1988 legislation requiring the study.
The study was based on substantiated reports of maltreatment
involving 1,834 children from 35 child protective agencies during
a six month period in 1991.
Overall, children with disabilities are maltreated at 1.7 times
the rate of other children. In nearly half of those abuse cases,
the child's disability was at the root of the abuse or neglect.
In all but 14 percent of cases studied involving a child with
disabilities, the maltreatment was either committed or permitted
by a child's primary caretaker, who is generally the mother, the
authors of the report stated.
The study also documented that maltreatment often causes
children to develop a disability. More than half of all children
who were neglected developed a disability. Sixty-two percent of
those children who were sexually abused, 48 percent who were
emotionally abused, and 15 percent who were physically abused,
experienced a disabling condition as a result of abuse/neglect.
For further information and for copies of the report, contact:
National Clearinghouse on Child Abuse and Neglect, 1-800-FYI-3366.
Source: Associated Press release appearing in Minneapolis Star
Tribune, October 7, 1993.
[from Futurity, for further information see below]
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
(206) Wed 17 Nov 93 12:19a
By: Ian Hebert
To: Gordon Gillesby
Re: GUTHRIE THEATER PRESS RELEASE
GG>For Immediate Release NEWS RELEASE
GG> Audio Description at the Guthrie Theater
GG> The Guthrie is pleased to announce that the 1993/94 season
marks the beginning of a complete series of Audio Described
performances. One Saturday matinee and one evening
performance of each play is Audio Described. Before each
audio described Saturday matinee, the Guthrie offers a
pre-show Sensory Tour providing blind and low vision
patrons the opportunity to feel the textures of the
costumes, to hold a variety of props, and, if safety
allows, to walk on stage and discover the layout of the set
design.
Hi Gordon!
I thought I'd drop you a brief note about this press release. I
know that you didn't write it, and are just forwarding it, so I'd
appreciate it if you could pass on my comments to the person who
wrote it.
First of all, the Guthrie Theatre is to be commended for
providing this audio description service to the blind and
low-vision theatregoing public.
What is not so praiseworthy, however, is the idea of a "Sensory
Tour", and particularly the inclusion of the statement in the
press release, to wit: "if safety allows, to walk on stage and
discover the layout of the set design."
I believe the idea of a "Sensory Tour" to be condescending--it
might be appropriate if the target audience were grade school
children, but it is not appropriate, in my opinion, for adult
theatregoers. I view the statement regarding safety as
particularly offensive, reflecting as it does, the preconceived
notion that the blind need to be protected from all sources of
possible danger.
Finally, you might wish to query the theatre management as to
whether they plan to offer sign-language interpretation for their
deaf and hard-of-hearing patrons.
Ian Hebert
London, Ontario, Canada
Internet: ian.hebert@homebase.com FidoNet: 1:221/128
PGP 2.3a Public Key Available on Request
posted on:
Home Base BBS, St. Thomas, Ontario (1:221/128)
(273) Mon 22 Nov 93 1:21p
By: Gordon Gillesby
To: Ian Hebert
Re: GUTHRIE THEATER PRESS REL
On stardate 9580.71 (11/22/93),
in DRAGnet conference (50) ABLEnews__,
dealing with: GUTHRIE THEATER PRESS REL,
Ian Hebert wrote to Gordon Gillesby:
>>GG>For Immediate Release
NEWS RELEASE
>>
>>GG> Audio Description at the Guthrie Theater...
> I thought I'd drop you a brief note about this press release. I
know that you didn't write it, and are just forwarding it, so I'd
appreciate it if you could pass on my comments to the person who
wrote it.
Your comments, in their entirety, will be passed on by FAX as of
today. Thank you for the gentleness of your reply - I appreciate not
being trashed as the messenger!
gill
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
(227) Thu 18 Nov 93 6:48p Rcvd: Sun 21 Nov 1:50p
By: Leah Owens
To: Earl Appleby
Re: ABLENEWS ECHO
Thanks, you must be embarrassed by the private message sent to
you. <G>
I sure wish you were up here as I got a landlady (she owns the
land where MY mobile sits) I recently had a wheelchair ramp put
in, the frame was put up last Thursday, when I took my son to the
doctor on Friday, left at 8:30 AM an returned at 10AM she had
tore it all down and said not here. And I already have a permit
and had permission. The police would not help, no one.
posted on:
Taurus BBS * Millsboro DE* (302)934-1323 (1:150/5)
(379) Sun 21 Nov 93 11:43a
By: Paul W
To: Leah Owens
Re: Ramp
Quoting Leah Owens to Earl Appleby
LO> Thanks, you must be embarrassed by the private message sent to
you. <G> I sure wish you were up here as I got a landlady
(she owns the land where MY mobile sits) I recently had a
wheelchair ramp put in, the frame was put up last Thursday,
when I took my son to the doctor on Friday, left at 8:30 AM
an returned at 10AM she had tore it all down and said not
here. And I already have a permit and had permission. The
police would not help, no one.
Was browsing thru the message file and read your message and
thought that I would respond. I was discusted to hear that
someone would tear down your ramp and thought that I would reply.
If the local police will not help, I know of an agency that may.
Have you tried to call your local FBI field office or the US
district attorney's office? I know it sounds silly, but I think
there is a new Federal Law that protects your rights to have a
ramp at your place of residence. This Federal law also allows
people who have seeing eye dogs to allow them to have their dogs
in public places as well as in apartments or other residences.
Its a new law that was passes in 1993. It also requires public
buildings to have wheelchair accessiblity and makes employers
responsible for to make adjustments for employees who are in
need. So, I hope this is of some help and I wish you luck in that
the Feds will come down heavy on your landlady. (Or RampRaider
as the case may be). So let me know if I can be of help at this
end as I may have access of the information that may be of help.
Paul W.
posted on:
The Voltage Drop - Sale Creek, Tn. - (1:362/619.0)
(266) Sat 20 Nov 93 5:54p
By: Patrick Ivey
To: ablenews
Re: Literacy of blind Kids
* Forwarded from "The C.U.R.E Network - State Pub Echo"
* Originally by Greg Hanson
* Originally to All
* Originally dated 16 Nov 1993, 18:19
Hi all, I've posted this for your information.
It is excerpted from the Oregon Outlook, a publication of the
National Federation of the Blind of Oregon.
The Oregon Braille Bill:
An Exercise in Co-operation
by Carla McQuillan
In the spring of 1992, a task force determined that the Oregon
State School for the Blind (OSSB) and the Oregon State School for
the Deaf (OSSD) were serving far too few children for the total
dollars spent. The recommendation from the task force was that
both schools be closed, and all the students in those facilities
mainstreamed. In an effort to preserve the programs,
Superintendent of Education, Norma Paulis, developed a plan
wherein the two facilities would co-exist on a single property,
without compromising the integrity of either of the programs. For
more than 10 years, the School for the Blind has been a target in
budget wars, and this year's Measure 5 cuts were the deepest yet.
Closure of the school had been avoided in the past by protests
from the blind community. For this battle, we believed that some
creative negotiating was needed to preserve the program.
At our Member's Seminar last fall, we took a critical look at the
quality of education for blind children in Oregon. We agreed
that there was room for improvement, particularly with regard to
the programs and curriculum through OSSB. We considered the
ramifications of relocating the blind school, and concluded that
the greatest loss would be the physical building itself. We
concurred that a major restructuring may be the best way to make
sweeping improvements in the program. Our primary concern was
to insure that the two programs (OSSB and OSSD) remain totally
separate and intact.
We approached Norma Paulis, offering support on her proposal to
relocate the School for the Blind, if the Department of Education
would involve us in the restructuration and planning of the new
facility, and if they would help improve the quality of education
for all blind children in Oregon by working with us on a Braille
Literacy Bill.
We worked closely with Maurine Otis from the department on the
language of the bill, using the Texas bill as our model. In
February, Senator Bill Dwyer of Springfield sponsored the bill.
In early March, 18 members of the NFB of Oregon visited the
offices of all 90 Oregon legislators. We were prepared with
folders containing: a copy of the Braille Bill, a braille
alphabet card, a few pieces of NFB literature on braille
literacy, an NFB of Oregon brochure, letters of support from the
Commission for the Blind, the director of OSSB, the director of
the Oregon Text Book and Materials Center for the Visually
Impaired, the President of the Alliance for Blind Children, and
a fact sheet describing the braille bill, the proposed relocation
of the OSSB.
The Text book and Materials Center, the Department of Education,
and the National Federation of the Blind of Oregon had
representatives to testify at each of the hearings on the braille
bill. The Confederation of School Administrators (COSA), was
present at one of the hearings in the Senate, and testified in
support of the bill, focusing on the untimely fashion in which
braille text books are made available to blind students. The
President of COSA testified that the text book section of this
bill would expedite the process of text book production, and
improve teacher effectiveness tremendously.
The proposal to use the money from the sale of the School for the
Blind to fund the building of the new school on the 52 acres of
the School for the Deaf campus, was brought before the
legislature. The legislators felt that there was insufficient
data to determine the feasibility of the relocation, and deferred
a decision to close or relocate the Schools at this time.
The Oregon Braille Bill passed unanimously through the Senate,
and with only 4 decanting votes in the House. Senate Bill 934
was signed by Governor Roberts on July 14, 1993. The text
follows....ABLEnew's Editor's Note: The full text is available from
CURE, to conserve space we reprint the Summary:
SUMMARY
The following summary is not prepared by the sponsors of the
measure and is not a part of the body thereof subject to
consideration by the Legislative Assembly. It is an editor's
brief statement of the essential features of the measure.
Requires blind student to receive individualized education
program. Directs assessment to determine most appropriate
learning media including but not limited to Braille. Requires
individualized education program to specify extent and nature of
student's training in Braille, pursuant to standards adopted by
State Board of Education. Requires materials to be in
computer-accessible format capable of Braille reproduction.
Requires teachers of blind students to demonstrate competence in
reading and writing Braille. Takes effect September 1, 1994.
posted on:
Pat's House - Coos Bay, OR USA (1:356/3.21)
(280) Tue 23 Nov 93 5:28p
By: Gordon Gillesby
To: All
Re: The Power of To:
The Power of To:
"Sometimes you're the windshield,
sometimes you're the bug.
Sometimes it all falls together,
sometimes you're just a fool in love.
Sometimes you're a Louisville Slugger,
sometimes you're the ball.
Sometimes it all comes together,
sometimes you're gonna lose it all."
These lyrics kept time in my head for the past two months. There
were other words swimming in here, too, like: betrayal,
incompetence, self-serving liars (is there some other kind?),
isolation, greed, abuse, frustration. It's said there are three
kinds of lies: lies, damn lies and statistics. If that's true,
then there may also be three kinds of liars: bureaucrats,
politicians and middle managers using computers.
Many, but by no means all of them, relate to Metro Mobility, RTB
and ATE along with several guest politicians who signed in along
the way. In the past 20-odd days, I've probed the breakdown of
Metro Mobility through conversations and meetings with riders,
providers, RTB, ATE and even a few National Guard.
I could go into a long discourse about how the immediate cause for
the Metro Mobility breakdown was poor computer systems design and
programming. That it wasn't necessary for the riders or the
State of Minnesota to go through all this because these problems
were known three weeks (at least) before the cut-over date of
October 1st. Or to point out RTB failed to provide for
independent verification of the ATE's computer generated
statistics and seemingly failed adequate study of appropriate,
proven technology-based para-transit solutions before awarding
contracts in the first place. That there was no good reason for
going out-of-state instead of working with local, more
experienced, providers. Or pointing out that most managing
executives would have seen this disaster coming from several
miles off.
I could but I won't. Why? In part, because few understand the
critical technological problems or their ramifications. And
partly because so many people I've encountered during this
episode tread heavily upon the needs of the disability community
to advance personal, private, political and commercial agendas
which are frequently at odds with the best interests of people
with disabilities, their care-givers and the tax-paying public at
large. But mostly because it misses the most important point.
In all the hub-bub and finger-pointing lately, it seems we've
forgotten we're talking really not about buses and schedules and
computers and standing-orders. We're talking about human beings.
People.
People in the form of a Metro Mobility riders who feel greatly
confused, hopeless, abandoned and cut off from the world. And
they do not like being pawns in someone else's powerball game.
People who have a right to adequate, flexible public
transportation.
People who are drivers and providers (past and present) who care
about the people they transport. Who work hard providing
paratransit and developing rapport because they recognize their
riders are no less human for being disabled or elderly. They,
too, are angry, confused, and very tired of trying to work an
unworkable situation while enduring everyone else's fits of
temper.
People like the men and women of the National Guard who heroically
interrupted their personal and professional lives to serve and
assist their fellow citizens. Who experienced great frustration
at the lack of support from ATE management, and receive too
little thanks for a job well done. They did not get to hear, as
I did, the woman who expressed gratitude at how the Guard treated
riders. She said, "for the first time in weeks, we don't feel
like cattle."
How about some people who work for Metro Mobility, RTB, and, yes,
even ATE who are deeply troubled by this disaster. People at
MCIL, rehabilitation facilities and countless non-profits all
over the Metro area who anguish over friends and relatives unable
to use a system which should be there for them. And the many
nameless, faceless people quietly working in the background to
find solutions and volunteering their own time and money to help
get other people where they need to be.
As the old commercial said: "people helping people". If everyone,
from ATE management to Metro riders, kept this in mind, we might
develop better solutions, get more inter-group cooperation and
avert further disaster. Life, Robert Fulgum wrote, is really
pretty simple: it works best when we don't fight, we clean up our
own mess and when we hold hands and stick together. It might be
time for some bureaucrats, politicians, managers, riders and
advocates to remember that.
The final chapter of this saga isn't written. We - all the
people in this community - must make our voices heard and make
sure they continue being heard. While that's true, we must also
balance our anger remembering that it isn't really "us" verses
"them". It's all "us" since we're neighbors all living in the
same community. You and me.
And if we don't care about each other, who will?
Gordon Gillesby is internationally unknown for his
contemplations of socially significant issues such as whatever
happened to the guy who played Radar on the old M.A.S.H.
television series. He is less widely known as the founder of
DRAGnet, a non-profit group concerned with quality disability
information resources.
The Power of To: is about communication for people with
disabilities; please send comments and questions about this
column to Access Press.
[from Access Press, for further information see below]
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
(341) Mon 15 Nov 93 1:33p
By: Arlette Lefebvre
To: All
Re: Porphyria in royalty
PORPHYRIA IN ROYALTY:
An article from Md Medical Journal, 10/93:
Vignette of medical history: Porphyria in royalty
Joseph M. Miller, MD
Historians have often been thought to underestimate the impact of
disease on history, but in many instances, a direct cause and
effect state may be defined. Illness is not always the reason for
change, but porphyria certainly influenced events in England and
other parts of Europe.
Students of the American past will recall the description of George
III of Great Britain as given in the Declaration of Independence.
He was regarded as an absolute tyrant and was considered
responsible for many of the ills affecting the colonies.
George was also considered "mad" during several periods of his
reign, and the question of his sanity during the American
Revolution has been raised. At one time, he was thought to have a
manic-depressive personality but investigative studies have
produced a more reasonable and acceptable diagnosis of porphyria.
Further wide-ranging familial studies eventually led back to Mary
Queen of Scots.
The porphyrias are a group of uncommon inherited disorders caused
by an accumulation of porphyrins in the body. Disease transfer to
progeny is by means of an autosomal dominant gene controlling
porphobilinogen deaminase formation. Symptomatic and asymptomatic
heterozygotes for the defect have a 50% deficiency of the enzyme.
Curiously and still unexplained is that about 90% of those with
documented deficiency of this enzyme remain asymptomatic throughout
their lifetimes.
Individuals with latent or expressed disease may have an acute
attack precipitated by any number of factors. Symptoms occur more
frequently in females than in males. The disease is rare before
puberty, and incidence and severity decrease after menopause. In
addition, clinical manifestations are more evident during
menstruation. A great number of drugs, including the barbiturates,
sulfonamide derivatives, and synthetic estrogens, may precipitate
the ailment's return.
The clinical course is marked by intermittent episodes of abdominal
pain and spells of psychiatric turmoil. A painful paresis of the
arms and legs, visual disturbances, radicular pain, and dysfunction
of the autonomic nervous system may be seen. Increased amounts of
delta aminolevulinic acid and porphobilinogen (PBG) are excreted in
the urine. The port wine color sometimes seen in the urine is a
reflection of PBG conversion.
George III, the most well-known individual with the syndrome, had
his reign punctuated by five episodes of mental illness. Some
biographers thought he was courageous and steadfast, although his
drive to be a potentate and exert supreme personal rule led lo
major political changes in Great Britain. He was plain, sound, and
sincere but had little rapport with the artistic world. Religious,
moral, and temperate, he and his wife led an exemplary life. His
reign was the second longest in English history, although much of
the time he was considered insane or on the borderline and,
overall, not too bright.
The loss of the American colonial empire was a great blow to
England, but King George was not in one of his mad spells when the
event occurred. His last years were difficult for him and his
subjects. He became blind from cataracts and later, deaf. In the
years between 1788 and 1810, the king was apt to be ill at any
time. His conduct was most unusual, and his doctors decided that
George needed to be incarcerated for the protection of himself and
others. He was subjected to a wide variety of nonspecific
treatments without beneficial results.
Fifteen individuals with porphyria have been discovered in the
royal houses of Stuart, Hanover, and Prussia. The more famous
included Mary Queen of Scots, James I, Oueen Anne, George III, and
Frederick the Great. Two other afflicted people whose lineage could
be traced to these royal houses have been identified in more recent
times.
Mary Queen of Scots, one of the great invalids of history, suffered
repeated attacks of abdominal pain, vomiting, and mental
disturbances. Often confined to bed by these episodes, she became
melancholy, excitable, and distracted. Her political behavior was
such that she was forced to abdicate and flee to England where
Oueen Elizabeth kept her as a guest and prisoner for 17 years.
Convicted of treason, Mary was subsequently executed by Elizabeth.
James I, the son of Mary, succeeded to the throne of Great Britain
after the death of Elizabeth. He, too, had repeated attacks of
porphyria. Fits of unconsciousness were accompanied by passage of
bloody urine. His last illness terminated in convulsions and death.
Queen Anne, who succeeded to the throne in 1702 upon the death of
William III, married Prince George of Denmark in 1683. Besides
having innumerable miscarriages, Anne carried 17 children to term,
but they all died quickly except a son who succumbed at 11 of a
fever or smallpox.
Frederick the Great--the monarch on crutches--also suffered from
porphyria. He inherited the disease from his father, Frederick
William I, whose parents were first cousins and descendants of
Sophia in the Hanover line. Frederick the Great had repeated
attacks of difficulty with his stomach, vomiting, colic, and
constipation. At 35, he had his worst episode with a partial
apoplexy.
Many times porphyria produced dramatic and unusual events in this
group of royal individuals. It mimicked poisoning on five
occasions: Mary Queen of Scots in 1566; the Prince of Wales in
1612; James I in 1625; Henrietta Anne in 1670; and Caroline in
1775. Queen Anne had repeated unsuccessful pregnancies and so did
not produce an heir to the throne, perhaps as a result of
porphyria. This sequence of events led to the accession of the
Hanovers. In the reign of George III, porphyria occasioned the
regency crisis of 1788 and the eventual advent of Victoria to the
throne. She became the successor because of the death of Charlotte,
heiress presumptive, just after the delivery of a stillborn child
as a result of the royal illness.
Only a few members of the royal society have had overt porphyria,
and the numerous carriers will never be known as 90% would have
been silent partners. One individual who did show the disorder was
the father of Queen Victoria. She inherited the gene for hemophilia
from her mother, and this in turn was passed on to members of
succeeding generations. The intriguing question arises as to
whether Victoria also received the porphyria gene from her father.
If she did, its spread into the German house of Hohenzollern and to
her grandson, William II, would have been possible.
As is evidenced by the above, disease can have a significant impact
on history. Porphyria certainly had an effect on English history
for centuries.
a bientot, I hope....?
docteur froggie.
posted on
ADAnet: Ability OnLine - Toronto Canada - (416) 650-5411
ABLEnews Resources is published by CURE Ltd. For further information,
contact CURE, 812 Stephen Street, Berkeley Springs, West Virginia
25411 (304-258-LIFE/258-5433).
Credits:
Access Press:
Articles from Access Press Newspaper may be reprinted with
attribution; letters and submissions are welcome. For more
information or to submit material for publication, please
contact:
ACCESS PRESS
3338 University Avenue S.E.
Minneapolis, Minnesota 55414.
612/379-0989 (voice)
612/379-2730 (FAX)
Futurity:
Articles from FUTURITY Newsletter may be reprinted with attribution;
letters and submissions are welcome. For more information or to
submit material for publication, please contact:
Roger Strand
Governor's Planning Council on Develomental Disabilities
Minnesota Department of Administration
300 Centennial Building
658 Cedar Street
St. Paul, MN 55155
612/296-9963
(92) Mon 8 Nov 93 11:22p
By: David Andrews
To: All
Re: November Braille monitor Available
The Braille Monitor for November, 1993 is now available for
downloading or file request from NFB NET. It can be had under
the file names BRLM9311.ZIP or BRLM9311.TXT.
The Monitor can be downloaded from NFB NET by calling (410)
752-5011, n,8,1 at 300, 1200, 2400, 9600, or 14.4K baud. You can
also file request it by using the magic file name monitor from
Fidonet 1:261/1125.
This month's edition contains a program item from the 1993
national convention entitled MAINSTREAMING, SCHOOLS FOR THE
BLIND, AND FULL INCLUSION: WHAT SHALL THE FUTURE OF EDUCATION FOR
BLIND CHILDREN BE?, POLITICAL CORRECTNESS IN THE WORKPLACE by NFB
NET user Curtis Chong, CALIFORNIA VENDORS WIN RIGHT TO
INDEPENDENT ELECTIONs by Sharon Gold, and an UPDATE ON A
DOWNFALL: NAC'S SLIDE CONTINUEs. There are also 3 articles
concerning NFB training centers and their students
including,CENTERING ON SUCCESs, COMING TO TERMS WITH MYSELF AT
THE COLORADO CENTER FOR THE BLINd by Jaime Fradera, and BLIND,
INC., BUDDIES GIVE THUMBS Up. There is also information and
registration forms for the 1994 BRAILLE READERS ARE LEADERS
CONTESt, and THE NATIONAL FEDERATION OF THE BLIND 1994
SCHOLARSHIP PROGRAM and much much more.
Please note that the name of Monitor files has been changed.
The year has been put in front of the month. This was done upon
the request of some readers, as well as after some discussion on
NFB NET. People felt that this would allow them to search by
year. We will try it out.
Happy reading!
David Andrews
posted on:
NFB NET Baltimore, MD (410) 752-5011 (1:261/1125)
(128) Sun 14 Nov 93 8:19p
By: Earl Appleby
To: All
Re: ABLEnews Review
ABLEnews Review
[ABLEnews Review consists of selected messages appearing in the
ABLEnews conference. This issue--our largest to date: thanks,
ABLEnewsers!!!-- may be freq'd as ANR9310.ZIP from
Lincoln Legacy (1:109/909), HandiNet (1:275/429), and other BBSs
carrying ABLEnews files. Please allow a few days for processing.]
ABLEnews Review
Vol. I, No. 10 Earl Appleby, Jr.
October 1993 Moderator/Editor
FEATURES A: Former Frogman Teaches Swimmers with Disabilities
[Gordon Gillesby]
B: Chasing St. Elmo's Fire: Accessing Disability Services
[Leslea Mosher Jones; Michael Collins]
C: Winning Team (blind sportscaster Don Wardlow and partner)
[Earl Appleby]
D: Editorial Specters of Nazism (in health reform debate)
[Gordon Gillesby]
E: Sticking It to TAB Parking Pirates [Jeff Belina; Ray Landers;
Louis Lawson; Jeffrey Vandyke; Bob Lantrip
F: TABs Slow Down Tammy (in bid for independent living)
G: Field of Dreams (children with disabilites play ball)
[Earl Appleby]
ABLENEWS & Narcolepsy/Cataplexy [Leslea Mosher Jones]
VIEWS
Expanded Dutch Euthanasia [John Covici]
Blind Farmers Reap Success [Earl Appleby]
Bureaucrats Back Off [Earl Appleby]
Parents [Gordon Gillesby]
On the Fast Track (Sharon Monsky fights scleroderma)
[Earl Appleby]
Myth Versus Reality: The Paradox of Pesticide "Safety"
[Leslea Mosher Jones; David Morrell]
Noise and Hypertension [Arlette Lefebvre; Earl Appleby]
My First "Event" in Lansing (disability conference)
[Gordon Gillesby]
Druken Wheelchair Driving
[Warren King; Josef Schwartz; Ray Landers]
Myoptic on Bioptic? [Earl Appleby]
New Drug For Alzheimers [Arlette Lefebvre]
A World Without Polio [Arlette Lefebvre]
ARTS Sticking to It (stamps showcase artists with disabilities)
Calling All Disabled Women Poets [Arlette Lefebvre]
ADVOCACY Search for Life (through bone marrow donation)
[Earl Appleby]
Metro Mobility Plan Derailed [Gordon Gillesby]
Neurological Action Alert: Letter March on Hope
[Gordon Gillesby]
Screen Reader Support Letters Needed [David Andrews]
Gripe Night (ABLE access to talk radio) [Alan Hess]
No Access, No Peace [Earl Appleby]
FDA Anti-Nutrient Rule [Gordon Gillesby]
Had Trouble in Nevada? [Gordon Gillesby]
Disability Communications Initiative [Gordon Gillesby]
Asleep at the Wheel [Earl Appleby]
Statewide Freeze on Attendant Services [Lisa Stapp]
DATA LINE State of the Nation (poverty in America) [Earl Appleby]
HEALTH Reframing the Health Care Rationing Debate
REFORM [Gordon Gillesby]
Disability Testimony Sought [Greg Hanson]
MAIL BAG "Futile" Care Rules Are Checkbook Euthanasia
[Earl Appleby]
NEWSLETTERS Appreciation for Reach Out [Earl Appleby]
Braille Monitor (September-October 1993)
[David Andrews; Warren King]
Island County Coalition of Citizens with Disabilities
Newsletter (July 1993) [Earl Appleby]
The Attitude (September 1993) [Gordon Gillesby]
Futurity (October 1993) [Gordon Gillesby]
North Suburban Consumer Advocates for the Handicapped
Newsletter (October 1993) [Gordon Gillesby]
The Spinal Column (Summer 1993) [Earl Appleby]
Newsletters Needed! [Earl Appleby]
The Fulcrum [Gordon Gillesby; Dave Thomas;
Leslea Mosher Jones]
Disability Rag [Jesse Tharin]
Australian and New Zealand SIG Newsletter
(September 1993) [Trevor Gosbell]
RESOURCES Cross Our Desk [Earl Appleby; Gail Hitson]
Disabled Travelers Friendship Network
[Steve Fessler; Justin Pressley]
CD-Rom Training for Blind Users [Sharon Duffy]
Nutrition and Physical Disabilities
[Gordon Gillesby]
Come On In, The Water's Fine [Gordon Gillesby]
Voice Input Systems [Deb Clark]
ABLEnews Conference Sources [Warren King; Jeff Belina]
Word Scholar [Jeff Belina]
ASAP Tutorial [David Andrews]
No Pity: People with Disabilities Forging
a New Civil Rights Movement [Lisa Stapp]
NEADS Publications for Students with Disabilities
[Arlette Lefebvre]
Communication Aids Catalog (free) [Arlette Lefebvre]
Adaptive Technologies for Learning and Work Environments
(computers) [Patrick Ivey]
Editor's Note: ABLEnews Review is compiled from and for our ABLEnews
community with appreciation for all contributors in the
hope such news and views may stimulate thinking and in
the conviction that one can disagree without being
disagreeable. Bracketed contributors are the ABLEnews
participants who posted the item, not necessarily its
author.
ABLEnews P.S.
ABLEnews is an interactive computer conference featuring news,
resources, and referrals of special interest to persons with
disabilities. It is carried by some 200 BBSs in the US,
Canada, the UK, Australia, Greece, and Sweden and is available
by request from Fidonet (where it is on the backbone), ADANet,
and Family Net. Our news items can be obtained as text files
and we produce two digests of disability/medical news (suitable
for bulletin and file use)--Of Note and MedNotes. For information
on how you may obtain ABLEnews files netmail John Coviciat Lincoln
Legacy (1:109/909).
...For further information, contact CURE, 812 Stephen Street,
Berkeley Springs, West Virginia 254511 (304-258-LIFE/5433).
posted on:
ABLEnews...for news Of Note. (1:262/4)
(146) Fri 12 Nov 93 12:30p
By: Gordon Gillesby
To: All
Re: SSA DISABILITY NEWSLETTER
The following online newsletter has been received at DRAGnet.
(612/753-1943; 1:282/1007; 94:94/2; 16:612/33)
It may be read online, downloaded from file area #2 or obtained
by file request (FREQ) using the filename:
SSAD9309.ZIP
The table of contents has been displayed below to give you
some idea of the newsletter's contents.
Disability Notes
September 6, 1993
Issue Contents
Associate Commissioner's Column
Project Able Will Help Link Beneficiaries to Jobs
Testing Ways to Improve the Disability Process
SSI Claims to Allow Immediate Payment
to Claimants Meeting Certain Medical Criteria.
Principal Deputy Commissioner Appointed
New Rules Published for HIV/AIDS and Other Immune System Impairments
New Social Security Publication for Blind People
SA Tries New Approach of Continuing Disability Reviews
Enhanced Communications Link
Regional Medical Advisors and Central Office Components
Memorandum from 1956 Provides a Sense of History and Perspective
Education and Health Professionals
A Vital Link to SSI Benefits for Children
Professional Relations Conference Set for September in Baltimore
Disability Notes - TEV
DISABILITY NOTES is published by the Office of Disability at the
Social Security Administration. It is distributed free of charge
to readers interested in the disability program both within Social
Security and in external agencies/organizations. It is intended
to be informational, and not an official expression of policy.
Readers may reproduce all or part of this publication for further
dissemination.
The electronic version (TEV) is published by DRAGnet
Disability Resources, Affiliates and Groups Network
Gordon Gillesby, TEV editor
1:282/1007 (FidoNet)
94:94/2 (ADAnet)
16:612/33 (siMNet)
DISABILITY NOTES
Office of Disability
545 Altmeyer Building
Baltimore, MD 21235
Ken McGill, Editor
Telephone (410) 965-3988
FAX (410) 965-6503
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
(178) Tue 16 Nov 93 12:08p
By: Gordon Gillesby
To: All
Re: november access press
The following online newsletter has been received at DRAGnet.
(612/753-1943; 1:282/1007; 94:94/2; 16:612/33)
It may be read online, downloaded from file area #2 or obtained
by file request (FREQ) using the filename:
AP931110.ZIP
The table of contents has been displayed below to give you
some idea of the newsletter's contents.
ACCESS PRESS
A monthly newspaper for persons with disabilities, providers of
care, agencies, support groups and other enlightened people freely
distributed throughout the Minneapolis-St. Paul metro area and via
DRAGnet Information Service.
Volume 4 Number 11
LIST OF CONTENTS
November Editorial 1993
Do We Really Want a Paratransit System?
Access Press Checks ATE's References
New Radio Program - Disabled and Proud - It's Not an Oxymoron
Letters to Access Press about Metro Mobility/ATE
"We're Mad As Hell and We're Not Going to Take It Any More!"
by Lolly Lijewski
Regional Transit Board Asks for some Answers
The Power of To:
Arthritis Foundation and Hennepin County Medical Center
Offer Warm Water Exercise Program
The Sister Kenny Institute Brain Injury Clinic
Share Your Chair
Aging - Its Not Just Staying Alive
Hello Nicole
PPL Builds an Accessible Home
St. Paul and Minneapolis Societies For The Blind
Adopt New Name: Vision Loss Resources, Inc.
Community Education Adult Enrichment Instructors
Letter to the Editor:
PACER Workshop Looks at Software
A Call to African-American Parents
Classified Ads
Calendar of Events
ACCESS PRESS
3338 University Avenue S.E.
Minneapolis, Minnesota 55414.
612/379-0989 (voice)
612/379-2730 (FAX)
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
(181) Tue 16 Nov 93 12:22p
By: Gordon Gillesby
To: All
Re: NOVEMBER FUTURITY NEWSLETTER
The following online newsletter has been received at DRAGnet.
(612/753-1943; 1:282/1007; 94:94/2; 16:612/33)
It may be read online, downloaded from file area #2 or obtained
by file request (FREQ) using the filename:
PCDD9311.ZIP
The table of contents has been displayed below to give you
some idea of the newsletter's contents.
FUTURITY
Newsletter
Minnesota Governor's Planning Council on Developmental Disabilities
November 1993
Issue Contents
Abuse, Neglect Higher for Children with Disabilities;
Families Need Support
The `Yes-But' and `Butwhatabout' Kids
by Marsha Forest and Jack Pearpoint
Futurity Available Via Consortium Electronic Clearinghouse
Information for Seniors on "linkAGE LINE"
Captioning Comes of Age!
Communications Opened to People Who Are Deaf/Hard of Hearing
Health Department Announces New Name:
"Minnesota Children with Special Health Needs"
Metro Mobility Issues Public Apology to Riders
Publications
Metro Mobility `Issues Line' Established
PACER Center Awarded Federal Transition Grant
Mark Your Calendar
Lending Library
Reflections on Language
Roger Strand
Governor's Planning Council on Develomental Disabilities
Minnesota Department of Administration
300 Centennial Building
658 Cedar Street
St. Paul, MN 55155
612/296-9963
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
(183) Tue 16 Nov 93 12:39p
By: Gordon Gillesby
To: All
Re: NOVEMBER NSCAH NEWSLETTER
The following online newsletter has been received at DRAGnet.
(612/753-1943; 1:282/1007; 94:94/2; 16:612/33)
It may be read online, downloaded from file area #2 or obtained
by file request (FREQ) using the filename:
NSCH9311.ZIP
The table of contents has been displayed below to give you
some idea of the newsletter's contents.
North Suburban
Consumer Advocates for the Handicapped, Inc.
NSCAH
Newsletter
November 1993
Issue Contents
President's Message
A note of thanks!
A wave cannot exist for itself
Calling on America
Ellingworth appointed to NOD
Bob Brick to Arc MN
Center's modular ramp design is ticket to mobility for disabled
Metro Mobility
Access Today newsletter
ARC annual meeting
Fall building code seminar
Assistive technology information Network
Job Accommodation Network
Services for Children with Handicaps
Epilepsy Foundation conference
National accessible apartment clearinghouse
Wanted: disability awareness coordinator
US West customers
Electronic print magnifiers
NSCAH
North Suburban Consumer Advocates for the Handicapped, Inc.
1201 - 89th Avenue N.E.
Suite 345, Room 465
Blaine, MN 55434
(612) 783-4708
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
(188) Tue 16 Nov 93 1:09p
By: Gordon Gillesby
To: All
Re: ACCESS TODAY NEWSLETTER
Access Today newsletter
From the Mankato State University Disability Services Office
newsletter Awareness, October, 1993.
The National Center on Accessibility is publishing a free
quarterly newsletter on the research, training, and technical
activities of the recreation, parks, and tourism industry that
are aimed at accommodating individuals who have disabilities. To
receive this newsletter contact:
The National Center on Accessibility
5040 State Road 67th North
Martinsville, IN 46151
(800) 424-1877
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
(240) Mon 22 Nov 93 8:40p
By: Earl Appleby
To: All
Re: Deaf History
ABLEnews Resource
Deaf History International
The premiere issue of "Deaf History International" is available
to anyone interested in the study, preservation, and
dissemination of the history of Deaf people. This eight-page
newsletter, in both English and French, is sponsored by the
Gallaudet University Alumni Association Laurent Clerc Cultural
Fund.
For your copy, contact Ausma Smits, editor, Department of
History, Gallaudet University, 800 Florida Avenue, NE,
Washington, DC 20002-3695. Smits may be reached at 202-651-5474
voice/TTY, or via E-mail (ASMITS).
[With a tip of our ABLEnews hat to Ausma Smits.]
posted on:
You've got a date with ABLEnews. (1:262/4)
(308) Sun 28 Nov 93 10:05p
By: Earl Appleby
To: All
Re: ICCCD Newsletter
Please pardon the delay in this post. More to come.--Earl
ABLENEWS Resource
Island County Coalition of Citizens With Disabilities
Newsletter
August 1993
MONTANA YOUTH PEER ADVOCACY PROGRAM!
The state of Montana is beginning a new program called Youth Peer
Advocacy Demonstration Project. More than half the disabled kids
in the state are within the project area. The idea is to promote
social integration and acceptance of students with disabilities
(who) tend to be stigmatized, are often cloistered in separate
classrooms away from the general student body, and excluded from
interaction with their TAB (Temporarily Able Bodied) peers.
The intent is to foster one on one relationships between TAB
students and students with a disability. It is helpful to
children if they have friends with the knowledge and courage to
speak out against others' disparaging comments and to help the
other students see the disabled child as a peer.
PROGRESS IS WHEN THEY LET YOU CRAWL ABOARD!
Dateline July 41, 1993. Enroute to Allentown, PA, where he was
scheduled to speak on the third anniversary of the Americans with
Disabilities Act, Rick Douglas was denied boarding on a United
Express airplane. Rick Douglas has MS, uses a wheelchair, and is
also Executive Director, of the President's Committee on
Employment if People with Disabilities.
After a lengthy confrontation, Douglas was allowed to board the
plane, which he did by crawling himself as no boarding means for
people of disability existed.
MAN WITH DISABILITY REVOLTS! HOLDS AIDE HOSTAGE!
After a spectacular disagreement with his attendant, a 73-year-
old Spokane man was in police custody for holding the aide at
gunpoint! Police blocked off nearby streets and negotiated the
aide's release. The live-in aide was uninjured. WARNING! DO NOT
TRY THIS AT HOME! RECENT STUDIES INDICATE THAT AIDES TEND TO
BECOME DISTRACTED AND DEVELOP FEELINGS OF INSECURITY IF YOU
DISCUSS ISSUES AT GUNPOINT! BESIDES JAIL ISN'T ACCESSIBLE.
Right to Die Venture in Washington State
"Compassion in Dying" is setting up shop in Washington. Their
services will consist of volunteers supplying information about
lethal drugs, and perhaps sitting in the room as the person
commits suicide. There seems to be some conflicting accounts
about what this group aims to do.
Barbara Dority, president, said that "Compassion" came about
after several Hemlock Society board members decided that people
needed more than information. Board members hope to get doctors
to prescribe lethal doses of medication.
Most of the organization's 11 board members are affiliated with
the Hemlock Society and the failed 1991 Initiative 119 to
legalize physician assisted suicide. "Compassion" shares offices
with the Hemlock Society.
Observers say that "Compassion"'s stated goals run afoul of a
1975 law which makes assisting suicide a felony. There is also
the matter of recognizing when people's condition is, beyond
dispute, terminally ill, or if their status is chronically ill
and/or disabled. Exactly how a lay group might make such a
determination is not clear.
Recent well-publicized cases of assisted suicide have crossed
this line. The legal authorities, the public, and many people of
disability have failed to recognize that public opinion is being
molded and a public policy is evolving. In a textbook example of
doublespeak, it is called "assisted suicide for the terminally
ill," while we are seeing euthanasia carried out on people who
are chronically ill and/or have disabilities.
Public debate might be useful if it served to make the public
aware of how discrimination, indifference, and do-nothing
attitudes lead to lives of hopelessness and despair for
chronically ill, disabled people, and the terminally ill. These
are not, however, admissible facts to the euthanasia crowd.
Instead, the hopelessness and despair of terribly depressed
people is exploited and their lives extinguished as a means of
obtaining publicity and making political points. You don't see
anyone on a crusade to ensure adequate pain treatment for
terminally ill people, it's easier to kill them.
Disability, chronic illnesses, and incessant pain are makers of
depression and hopelessness. How many of the highly publicized
recent "assisted suicides" were people with treatable depression,
with difficulties subject to resolution by proper medical
treatment, situations subject to relief by adequate treatment of
pain, or easily helped by social services adequate to make life
bearable? Instead of making it easier to die and reflecting a
cash register societal value system; why don't we make it easier
to live? Why should a life of dignity and self fulfillment be
incompatible with disability, and chronic illness? Why doesn't
compassion for terminally ill people extend to adequate treatment
of pain?
Have public attitudes about disability really changed all that
much from the time when people with disabilities were killed
outright or abandoned as beggar outcasts to die? Is this not one
more example of society's attitude towards disability and
chronic/terminal illness that one of the best funded and most
dedicated movements coming along in years is one that offers us
naught but "merciful release from our misery"?
Our lives could be transformed with as much money and effort
directed toward recognition of the need for attendant care,
respite care, assisted living, rehabilitation services, assistive
equipment, ramps, disabled parking places, adequate treatment of
pain, and other well known needs.
CURE Comment: CURE salutes Island County Coalition of Citizens
with Disabilities and all advocates fighting to secure such life-
enhancing, life-affirming goals.
The Scrap City Pack Rats
Continuing the trend of superheroes with disabilities, the Scrap
City Pack Rats have arrived! One has epilepsy, one has no legs,
one can't hear, and one can't see. The rats are three-foot tall,
were injured in a medical lab, and live in a scrap yard (where)
they turn junk into tools, and sally forth to fight crime with
magnetic yo-yos and flying wheelchairs.
Insurance Briefs
There is a continuing controversy involving insurance companies
and employers cutting off or restricting medical benefits to
persons with a catastrophic illness/disability. Recent events
have included cutting off or sharply reducing benefits for people
with AIDS. A Houston music store that cuts its AIDS benefits from
$1 Million to $5,000 after a clerk came down with the deadly
disease. People with other catastrophic disabilities have also
encountered this treatment. We're all in the same boat!
One June 9, 1993, the EEOC (Equal Employment Opportunity
Commission) filed suit against a New York union welfare fund for
cutting off benefits to a construction worker with AIDS.
Business experts are saying that the EEOC move may spur many
small businesses to drop health insurance entirely. Should this
occur, it would result in another scapegoating of people of
disability.
EQUAL ACCESS SOUNDS LIKE FUN
BUT, IT'S NOT MINE TILL THE RAMP IS DONE!
In Memoriam
Don Schram of Lake Stevens (WA) died August 9, 1993. Many of you
knew Don and his lovely wife, June. Don was a triumphant polio
survivor of many years experience. He survived a tussle with
cancer. He was also affected by post-polio syndrome. He wasn't a
"sit around in the wheelchair saying 'poor me' kind of guy." Don
lived a full and busy life. He had friends everywhere. A loyal
and loving spouse was an essential part of his support system.
Wherever we saw Don, we saw June. Don will be sorely missed by
his family and friends.
The Lion Got Waylaid
Kurt Dessauer of Bellingham, also known as "Kurt the Lionhearted"
and among those who really know him, "No more Mr. Nice Guy" had
the big six-0 birthday on August 4th, 1993.
For those of you who haven't had the pleasure of meeting him;
Kurt is one of the most effective and tireless advocates of
disability causes that we have in the states. He is the
politicians' and bureaucrats' worst nightmare come true. His work
in the accessibility field is legendary. He doesn't sit on high
visibility boards or have a cushy token job to spend his time
explaining to you why the establishment can't treat you like a
human being. He's out there in the trenches, getting disabled
parking places, accessible buildings, and fighting for accessible
and usable programs. He's OUR "Pit Bull" and he never quits or
gives up!
Instead of just "talking the talk," Kurt is "walking the walk."
Happy birthday, Kurt! May the cause prosper!
With a tip of our ABLEnews hat to Dale Flanery, president of the
ICCCD. For further information about the Coalition or their
excellent newsletter write: Island County Coalition of Citizens
With Disabilities; PO Box 387; Freeland, WA 98249. [Items whose
headlines are capitalized and centered are quoted in their
entirety. The remaining items are excerpted.]
...For further information, contact CURE, 812 Stephen Street,
Berkeley Springs, West Virginia 25411 (304-258-LIFE/258-5433).
posted on:
ABLEnews...for news and views. (1:262/4)
ABLEnews Review is published by CURE Ltd. For further information,
contact CURE, 812 Stephen Street, Berkeley Springs, West Virginia
25411 (304-258-LIFE/258-5433).
(19) Fri 5 Nov 93 11:47a
By: Earl Appleby
To: John Hargrove
Re: Diabetes Discussion
> Just want to take this moment and say HI to all.
> Diabetes Discussion is proud to be carring this echo
> for all its users.
> John Hargrove, SysOp
> Diabetes Echo Moderator
> Diabetes Discussion (382/68)
> (512) 451-9737
> Austin, Tx.
Welcome to a fine SysOp and a great Moderator!
It is swell to have another moderator join us on ABLEnews. We
have a number of moderators in the neighborhood. With my sieve of
a memory I dare not try to name them <smile> but the moderators
of such classic echoes as Amputee and Silent Talk and such new
and needed conferences as Tourettes Syndrome, which is now joined
us on the Fidonet backbone [congratulations, Pete!] are here if
memory serves.
Maybe we should take a moderators' roll call one of these days.
Thanks for your valued support, John, and every success with your
good work for those with diabetes. (My Dad contracted diabetes as
a result of prednisone treatment for respiratory problems he
experienced while living in coma, so I know first-hand the
dedicated care that helps persons with diabetes meet the daily
and--at times--deadly chalenges this disease poses.)
Earl
ABLEnews Moderator
posted on:
ABLEnews...Dare to care! (1:262/4)
(25) Mon 1 Nov 93 10:15p
By: Pete Richardson
To: ALL
Re: TOURETTES
To anyone who may be interested, TOURETTES is now on the backbone,
and may be requested via normal Fido mail links.
Pete
posted on:
Pete's Place (Richmond, Va.) (804)-743-5529 (1:264/214)
(38) Sat 6 Nov 93 12:35a
By: Earl Appleby
To: Pete Richardson
Re: TOURETTES
St: Local
> To anyone who may be interested, TOURETTES is now on
> the backbone, and may be requested via normal Fido
> mail links.
> Pete
Congratulations, Pete, on a job well done, and my commendation
extends to all who lent Pete a hand in this splendid achievement.
Earl
posted on:
ABLEnews...Dare to care! (1:262/4)
(43) Wed 3 Nov 93 9:58a
By: Gary Bottger
To: All
Re: HiYa
Just wanted to drop a note saying that the Wolf's Den Quickbbs in
Sioux City Ia, is now carrying this conference and is very happy
to be carry this conference. Over the last couple of weeks, I
(Sysop) have been monitoring a bunch of new conferences that I have
started pulling. This has to be one of the most friendly
confernces on the back bone. I also noticed that there is alot
of information being passed back and forth in the Echo, GREAT!
To keep food on the table, I'm the Cosysop of Gateway 2000's
(Computer Company) Online Information Network. If there is
anybody on this conference that has any questions on Gateway
Hardware or Software, I would be more than happy to help out.
Gary Bottger
posted on:
WOLF'S DEN, SIOUX CITY IA. (712)252-4670 (1:288/10.0)
(44) Wed 3 Nov 93 10:42a
By: Gary Bottger
To: All
Re: Gateway 2000 On FIDO NET
Gateway 2000 now on FidoNet
Gateway 2000 has just been assigned it's node number on the
FidoNet. In order to prevent any undo burden on the FidoNet
backbone, we have set up an 800 number for crash mailing to and
from Gateway 2000. This number is 1-800-846-1786 and is running
24 hours a day, 7 days a week. This number is setup for mailers
only, normal modem calls will not be taken. Our node number is
1:288/17.
Gateway will be monitoring and providing support on several
conferences currently on the net. As net traffic increases, we
will start our own Gateway 2000 conference, which will be
monitored by a Gateway 2000 representative.
At Gateway 2000, our goal is to provide the best online customer
support in the industry. By providing support on Fidonet, and
providing an 800 number for FIDO sysops, we add another dimension
to our support areas. FIDO is the world's largest hobbiest
network consisting of over 27000 nodes (and growing everyday!)
We hope that by providing support on this network we will not
only provide a more economical means of contacting Gateway, but
we will also personify our own motto of, "You've Got a Friend
On-line."
Any questions and\or comments can be directed to Dan Liston or
Gary Bottger at 1:288/17. (simply address a Netmail to 1:288/17
(Netmail is a message conference found on all Bulletin Boards
that have Fidonet.)
posted on:
WOLF'S DEN, SIOUX CITY IA. (712)252-4670 (1:288/10.0)
(60) Wed 10 Nov 93 2:41a
By: Earl Appleby
To: Gary Bottger
Re: HiYa
Welcome, Gary, to you and the other SysOps that have joined us on
ABLEnews in the past few days. We appreciate each and every one of
you!
And, folks,...I know you won't believe this <grin> but I did not
"pester" Gary...I don't even think I asked him <laughing>.
> Over the last couple of weeks, I (Sysop) have been monitor a
bunch of new conferences that I have started pulling. This
has to be one of the most friendly conferences on the back
bone. I also noticed that there is alot of information being
passed back and forth in the Echo, GREAT!
I reposted this because I share your respect for the spirit our
users bring to our echo--which is why I think of ABLEnews as more
of a community than a conference. I thank you, Gary, for your
thoughtfulness in saying it. I also appreciate the generosity of
your offer:
> I'm the Cosysop of Gateway 2000's (Computer Company) Online
Information Network. If there is anybody on this conference
that has any questions on Gateway Hardware or Software, I
would be more than happy to help out.
Another resource is always welcome here!
Great to have you online, Gary! ... and Fran ... and Jim ... and
Kenny ... welcome one and all.
Earl
ABLEnews Moderator
posted on:
ABLEnews...ask for us by name. (1:262/4)
(45) Thu 4 Nov 93 11:53p
By: David Andrews
To: All
Re: U.S. Canada Conference On Technology
* Original Area: NFB-TALK
* Original To : All (1:261/1125)
Well, we are in the midst of the second U.S. Canada Conference on
Technology. We have the presidents of all the major technology
companies, as well as all consumer organizations, and agencies and
organizations all together. You can read the proceedings in the
January or February Braille Monitor.
Today, during the conference, Dr. Jernigan announced that NFB would
increase the funding of our low-interest loan fund from $60,000 to
$200,000. This is a 3 percent interest loan program.
If you want an application, contact Curtis Chong at 3530 Dupont
Avenue, North, Minneapolis, MN 55412.
The International Braille and Technology Center for the Blind has
moved to spacious and very nice quarters on the second floor of the
main building. We showed the new facilities today for the first
time.
David Andrews
posted on:
NFB NET Baltimore, MD (410) 752-5011 (1:261/1125)
(121) Wed 10 Nov 93 10:36p
By: Dan Houser
To: All
Re: SWS Terms
Here is a file containing some of the terminology of Sturge-Weber
Syndrome:
July 22, 1993 Sturge-Weber Foundation
BBS
SWFTERMS.DOC 614-899-9650
Columbus, OH
LAYMANS GUIDE TO SWS MEDICAL TERMINOLOGY
INTRODUCTION: This pamphlet was developed by the Sturge-
Weber Foundation (SWF) to assist you in comprehending
the vast amount of terminology you may be exposed to
now that you or your child have been diagnosed with
Sturge-Weber Syndrome (SWS). It defines in laymen's
terms the technical terminology you may encounter.
Use it to enable you to understand the medical papers
or reports on SWS which you read. If questions still
arise, contact your physician, the SWF, or post a
message on the SWFBBS.
AMBLYOPIA: Poor vision due to non-use of an eye caused by
underdevelopment of the visual pathway to the brain.
ANGIOGRAM: X-ray test to outline the blood vessels of an
organ such as the brain. Uses a dye which is injected
into a blood vessel in the arm or groin. The dye shows
up on the X-ray and therefore outlines all the blood
vessels.
ANGIOID STREAKS: Lines resembling blood vessels.
ANGIOMA: Any malformation made up of blood vessels. These
could be veins or a combination of arteries and veins
(arteriovenous malformations or AVMs).
ANTICONVULSANT: Any medication that counteracts seizures.
ARTERIORGRAM: Same as Angiogram.
BABINSKI'S REFLES: A reflex named after Prof. Babinski.
Stroking the sole of the foot should normally cause the
big toe to point downwards. A babinski sign is when it
points up instead, and the other toes fan out. Implies
spasticity. A babinski reflex is considered normal in
immature nervous system, such as in a baby.
BILATERAL: Both sides, as opposed to Unilateral (one side).
BUPHTHALMOS: Enlarged size of the eye. Caused by Glaucoma
occurring in infancy.
CAT SCAN (Computed Axial Tomography): X-ray test of any
organ, including the brain that uses computer recon-
struction of multiple images at different planes.
CONGENTIAL : Occurring from the time of birth.
CONTRALATERAL: On the opposite side.
CONVULSION (SEIZURE): Abnormal electrical discharge of the
brain causing a motor, sensory, or behavioral
disturbance.
CORPUS CALLOSUM: White matter connecting the lift and right
hemispheres (halves) of the brain.
CONTANEOUS LESIONS: Skin lesions.
DERMATOLOGIST: Skin doctor.
EEG (ELECTROENCEPHALOGRAM): A recording of brain electrical
activity.
FOCAL SEIZURE: A seizure confined to one part of the body
i.e. the eyes.
FORME FRUSTE: An aborted form of disease arrested before
running its course. Thus the disease appears in an
atypical and indefintite form.
GENERALIZED SEIZURE: A seizure involving loss of
consciousness.
GLAUCOMA: Increased pressure in the eye causing damage. May
lead to blindness if not treated.
HEMANGIOMA: Cluster of blood vessels.
HEMIPARESIS: Weakness of one side of the body.
HEMISPHERECTOMY: Operation where one half of the brain
removed.
HEMIPLEGIA: The extreme of Hemiparesis, where one side of
the body is completely paralyzed.
HOMONYMOUS HEMIANOPSIA: Visual impairment of one half of
one's visual field i.e., left half of each visual field
in each eye (not one eye).
INTRACRANIAL CALCIFICATION: Calcium deposits in the brain.
INTRACTABLE SEIZURE: Seizure that cannot be controled.
IPSILATERAL: On the same side (as opposed to Contralateral).
LOBECTOMY: Operation to remove one lobe of the brain. There
are four lobes on each side of the brain (Frontal Lobe,
Temporal Lobe, Parietal Lobe, Occipital Lobe).
MRI (Magnetic Resonance Imaging): A scan of the brain (or
other organ) which does not use radiation, but uses
magnetic energy.
NEUROLOGIST: A doctor who specializes in diseases of the
brain, spinal cord, nerves and muscles.
OCCIPITAL LOBE: The lobe at the most posterior (back) part
of the brain. Deals with vision.
OCCUPATIONAL THERAPIST: A professional specialist in
development of fine motor skills.
OPTHAMOLOGIST: A doctor with a medical degree who
specializes in diseases of the eye.
PARIETAL LOBE: Just in front of the Occipital Lobe. Deals
with sensory functions.
PET SCAN (Positron Emission Tomography): A scan that looks
at function, rather than structure of an organ,
including the brain.
PHYSICAL THERAPIST: a professional specialist in develop-
ment of gross motor skills and physical activities.
PORT WINE STAIN: Characteristic birthmark of SWS. Usually
on the face,but can extend to other parts of the body,
particularly the neck and trunk. A port wine stain by
itself does not necessarily constitute SWS.
PROGNOSIS: Predicted outcome.
SEIZURE: Often used synonymously with convulsion.
STROKE: In common usage, this refers to a part of the brain
being suddenly deprived of its blood supply, leading
to weakness or other symptoms.
TEMPORAL LOBE: The lobes on either side of the brain,
slightly above and in front of the ears. Deals with
emotions, memory, and speech.
THROMBOSIS: Blood clot
TRABECULECTOMY: A type of glaucoma surgery to lower the
pressure in a glaucomatous eye.
UNILATERAL: On one side.
For further information about the Sturge-Weber Foundation, or for
information of any kind related to Sturge-Weber Syndrome, please
contact:
The Sturge-Weber Foundation
P.O. Box 460931
Aurora, CO 80046
(303) 360-7290
or contact:
The Sturge-Weber Foundation BBS
P.O. Box 292403
Columbus, OH 43229
614-899-9650 24 hours a day, 14.4Kbps connection V.32b/V.42b
8-N-1
>Dan
>Sysop of Sturge-Weber Foundation BBS
posted on:
Sturge-Weber Foundation BBS, 614-899-9633 (1:226/300)
(150) Fri 12 Nov 93 12:44p
By: Gordon Gillesby
To: All
Re: SSA PUBLICATION FOR THE BLIND
New Social Security Publication for Blind People
The Office of Public Affairs at SSA recently published a
large-print publication entitled, If You Are Blind...How Social
Security and SSI Can Help. The publication contains information
on the various Social Security provisions that apply to blind
persons. It is designed to make it easier for people with visual
impairments to take advantage of their rights and exercise their
responsibilities under Social Security programs.
Because many blind people are interested in working, the new
booklet emphasizes the work incentives in the SSI and SSDI
programs and includes examples of how blind people can use them
to work. It also lists the various special services available to
people with visual impairments, including publications that are
available in alternative formats. The new publication will also
be available in Braille and recorded format.
Organizations and individuals interested in obtaining the new
publication should contact their local Social Security office.
DISABILITY NOTES is published by the Office of Disability
at the Social Security Administration. It is distributed
free of charge to readers interested in the disability
program both within Social Security and in external
agencies/organizations. It is intended to be
informational, and not an official expression of policy.
Readers may reproduce all or part of this publication for
further dissemination.
DISABILITY NOTES
Office of Disability
545 Altmeyer Building
Baltimore, MD 21235
Telephone (410) 965-3988
FAX (410) 965-6503
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
(169) Tue 16 Nov 93 4:55p
By: KEN GLICKMAN
To: ALL
Re: DEAFology 101 Videotape!
PRESS RELEASE
Release Date: IMMEDIATE
From: DEAFinitely Yours Studio
814 Thayer Avenue - Suite 305
Silver Spring, MD 20910-4500
Contact: Ken Glickman Deaf New World BBS
301-588-0965 TTY 301-587-2277
301-588-0548 Voice 8n1, 14,400 BPS
301-588-5261 FAX
Prof. Glick's Deaf Comedy Show - DEAFology 101 (tm)
NOW AVAILABLE on VIDEOTAPE!
SILVER SPRING, MD -- What's the feeling a DEAFIE diver
experiences while in the midair when he suddenly realizes he has
a hearing aid on? And, what do you call the person whom you never
hear from again after your first date together? How does it
really work in the Deaf world for interpersonal communication -
physics-wise?
Let Prof. Glick give your audience a crash course on Deaf Culture!
Prof. Glick's highly entertaining and fast-paced comedy routine,
DEAFology 101 (tm), as witnessed by both HEARIES and DEAFIES
across the country, from Boston, Massachussetts to Anchorage,
Alaska, is now available on videotape according to DEAFinitely
Yours Studio's Ken Glickman, a.k.a. "Prof. Glick." Author of two
humor books on Deaf culture, DEAFinitions (1986) and More
DEAFinitions! (1989), Ken says the show evolved from the early
interviews he gave. It was, according to Ken, a case where one
thing led to another: at first, it was just an interview, then a
longer talk, then an even longer lecture, -- and before long, a
full-fledged performance!
Videotaped live at Texas School for the Deaf by The Silent
Network's David Pierce, DEAFology 101 is one hour in duration, in
color, closed-captioned and voice-narrated.
Ken Glickman, born profoundly deaf, attended Clarke School for
the Deaf in his native state of Massachusetts for 11 years. After
graduating from Dartmouth College with a major with High
Distinction in Psychology/Mathematics, Ken joined IBM as a
computer programmer. He taught mathematics and computer
graphics/programming at National Technical Institute for the Deaf
at Rochester Institute of Technology (1980-81) and at Gallaudet
University (1985-86) under IBM's Faculty Loan Program. After
leaving IBM in 1987, Ken established DEAFinitely Yours Studio in
Silver Spring, Maryland, where he currently lives and works -
wearing several "hats" as a desktop publisher, magician, author
and comedian.
Individuals interested in seeing Ken's DEAFology 101 comedy show
or obtaining a videotaped copy of this show may contact him at
DEAFinitely Yours Studio at 301-588-0965 TTY, 301-588-5261 FAX or
301-588-0548 Voice. Also, they can call Deaf New World BBS at
301-587-2277 (8n1, 14,400 Bps) and select Door #52 (after
pressing [D] from Main Menu) for further information on this
videotape.
posted on
Deaf New World, Silver Spring, MD 301-587-2278 V32b (1:109/468)
(189) Tue 16 Nov 93 5:36p
By: Gordon Gillesby
To: All
Re: ASSISTIVE TECHNOLOGY NETWORK
Assistive technology information Network
Today, the rapid development of assistive technology makes it more
and more difficult to be well informed about what is available.
Both consumers and professionals find it hard to keep up with new
developments in the field. The assistive Technology Information
Network helps people find the assistive technology they need.
You can call one of the Network's information specialists weekdays
from 8:00 a.m. to 5:00 p.m. at (800) 331-3027 (Voice/TDD).
posted on
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
(190) Tue 16 Nov 93 5:45p
By: Gordon Gillesby
To: All
Re: NATIONAL APARTMENT CLEARINGHOUSE
National accessible apartment clearinghouse
From the Mankato State University Disability Services Office
newsletter, Awareness, October, 1993.
The National Apartment Association is now registering accessible
apartments to help people with disabilities find places to live. For
more information on this free service, contact Donna Newman at:
The National Accessible Apartment Clearinghouse 111 14th Street
N.W., 9th Floor, Washington D.C., (202) 842-4811 or (800) 421-1221
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
(223) Wed 17 Nov 93 5:02p
By: Bill Wilson
To: Patrick Ivey
Re: Help Please
On (13 Nov 93) Patrick Ivey wrote to All...
PI> Shawn Djernes is looking for a program for a friend.
PI> The program is called Winaccess.zip and allows one
PI> handed operation of a keyboard and also the useage
PI> of a mouse.
PI> A simular program may do just as well. So any word
PI> on such would be apriciated.
PI> Please post Abled echo. 8:963/15
PI> Or Shawn Djernes, Abled echo
PI> Thank You
>
PI> Pat
Hi Pat, I have a program which if you want to do a ctr-a, or a
alt-e, it let's you do just that. It works on "One-key", and
that is the name of it, "One-Key.zip". If you don't have it down
there, please let me know and I will send you a copy. BTW, it's
freeware, put out by "The Neil Squire Foundation". I've had a
stroke lost the use of my right hand, and this has just been a
godsend.
posted on:
PPP (1:10295/6)
(225) Thu 18 Nov 93 4:12p
By: Jim Stewart
To: Patrick Ivey
Re: Help Please
-> Shawn Djernes is looking for a program for a friend.
-> The program is called Winaccess.zip and allows one
-> handed operation of a keyboard and also the useage
-> of a mouse.
->
-> A simular program may do just as well. So any word
-> on such would be apriciated.
->
-> Please post Abled echo. 8:963/15
-> Or Shawn Djernes, Abled echo
->
-> Thank You
->
-> Pat
Winaccess.zip is available on Compuserve in the Microsoft area and is
under the filename ACCP.EXE.
- Jim
posted on:
Medicine Woman--> Pok NY 914-473-1696 1:272/58
(257) Mon 22 Nov 93 10:25a
By: Lee Lawson
To: Patrick Ivey
Re: Help Please
Hello Patrick!
Friday November 19 1993 10:04, Patrick Ivey wrote to Bob Lantrip:
PI> That's the problem Bob. We have heard of the program but can't
seem to find out where it is. I looked through 100s of local
files, But so far no luck. Looking for a similar version
now.
Available here as ACCPWIN - 309621 bytes. AccessDOS is available
as well as ACCPDOS - 95690 bytes. Those are the 'magic' names so
request do not need the extension. Freq away!
Lee
Sysop 106/1010
posted on:
The Politically Incorrect - Houston,TX (1:106/1010)
(239) Mon 22 Nov 93 8:34p
By: Earl Appleby
To: All
Re: Deaf Resources
ABLEnews to Use
Deaf Resources
The West Virginia School for the Deaf is establishing a learning
resource center, that will provide books, videotapes, and
interactive devices, and toys to be used with deaf and hard-of-
hearing children around the state.
Materials will be lent at no cost to parents and professionals
working with deaf and hard-of-hearing children.
MacDonald's Corporation recently sent Ronald McDonald to the
School for the Deaf in Romney with a check for $7,000 to purchase
materials for the new resource center. The center was initially
funded through a grant from ROnald MacDonald Children's
Charities.
For more information about the learning center, contact the
School for the Deaf at (1) {304} 822-4841.
[With a tip of our ABLEnews hat to the Martinsburg Journal.]
posted on:
ABLEnews...you can use. (1:262/4)
(263) Thu 25 Nov 93 10:47a
By: Earl Appleby
To: All
Re: ABLE SIGs
ABLEnews to Use
This DOES Compute!
[The following information may be freq'd as SIGSCOM.TXT from
the USA CFIDS/CFS BBS at 207-623-8486.]
SPECIAL INTEREST GROUPS
COPH-2
Committee on Personal Computers and the Handicapped
Executive Director of Illinois COPH
2030 West Irving Park Road
Chicago, IL 60681
312 477-1813
This is an organization offering a variety of services including a
newsletter,public meetings focusing on education issues, The
Larschoen Library for Personal Computers and People with
Disabilities, a technical assistance group,consultation by phone or
letter, personal computer loans and more. Its aim is to ensure that
disabled persons have access to the technologies for
education,employment and entertainment equal to those available to
the public at large.
Computers to Help People, Inc.
122 West Johnson St.
Madison, WI 53715
608-257-5917
This is a non-profit corporation whose goal is to use computer
technology directly for human benefit through teaching, information
dissemination and employment training. The group assists people to
obtain computers and computer based aids, and offers free training
courses on the devices.
DCCG, Disabled Children's Computer Group
c/o Center for Multi-Sensory Learning
Lawence Hall of Science
University of California
Berkeley, CA 94720
415 642-8941
The DCCG was formed in November of 1983 by a group of parents of
disabled children. Among the members of the group are parents,
teachers and professionals in the field of education, social
services and computer technology. The DCCG provides a forum for
the sharing of information and experiences about computer
applications for disabled children. Activities include
bi-monthly meetings at the Lawrence Hall of Science, weekend
workshops on specific topics, a reference library at the
Lawrence Hall of Science and demonstrations at conferences and
meetings. ABLEnews Editor's Note: DCCG's Bulletin Board Service
carries ABLEnews online.
Sherry Lowry
10622 Fairlane Drive
Houston, TX 77024
713 461-9654
Sherry is a parent of a blind teenager and has spent a great deal of
time investigating technology appropriate for her son's use. She is
a good resource for up-to-date information on software for the
Talking Apple and is organizing a network of resources and people
nationwide interested in computing for the blind.
National Assistance Project for Special Education Technology
The Network, Inc.
290 South Main Street
Andover, MA 01810
617-470-1080
NAPSET has been funded by the U.S. Dept of Education to increase the
knowledge, skills, and confidence of school systems in implementing
special education technology. Its major objective over three years
of the project will be to assist school districts across the country
to plan for the successful implementation of technologies in special
ed. NAPSET features will include: 1)on-site demonstrations of
technology products and applications; 2) information to keep clients
informed of existing and emerging products and applications;
3)individualized consultation in planning and implementing
technolgy; 4) trainingfor school district personnel, parents,
and community members offering strategies for coordinated
technology use and resource sharing; and 5) linking and
networking of districts with other federally-funded assistance
projects,model technology programs, and public and private
sector resources.
Western Center for Microcomputers in Special Education, Inc.
Sue Swezey (parent and founder)
1259 El Camino Real, Suite 275,
Menlo Park, CA 94025
Located in the heart of Silicon Valley, CA, the group is a
nonprofit corporation whose purpose is to interpret, clarify and
communicate to specialeducation users the latest microcomputer
research, development, products and applications. The Center
also sells a modified ECHO II voice synthesizer with an external
control for volume called the Catalyst.
4-Sights Network
Greater Detroit Society for the Blind
16625 Grand River Detroit, MI 48227
313-272-3900
The Network is on-line to facilitate the application of
present-day technology to the needs of the blind and visually
impaired. It is desgned to provide a nationwide,
computer-based, information system for workers with the blind as
well as for blind persons themselves. It will be made available
throughout the US to rehabilitation and education personnel
desiring to subscribe.
Special Net National Association of State Directors of Special Education
120 116th Street, N.W. Suite 404E
Washington, DC 20036
202-822-7933
This is a special education communication/information network.
It provides a nationwide network of educators, resource
organizations, advocacy groups, parents, and others interested
in special education. Features include electronic mail,
electronic bulletin boards, data collection and information
management systems.
ESPECIALLY FOR TRANSCRIBERS
National Braille Association
Bettye Krolick, Chairman of Automation
724 Powderhorn Rd.
Fort Collins, CO 80526
303 226-2062
GENERAL COMPUTER GROUPS
CUE--Computer-Using Educators, Inc.
PO Box 18547
San Jose, CA 95158
This is a non-profit California corporation founded by teachers
in 1978. The goal of the organization is assisting the
promotion and development of instructional uses of computers in
all disciplines and at all educational levels from pre-school
through college. CUE sponsors workshops, conferences, and
publications. In conjunction with the San Mateo County Office
of Education, CUE co-sponsors SOFTSWAP, a collection of donated
software available for copying at TEC Centers within the State
of California or by mail order for a small fee.CUE has over 9000
members through the US and Canada and is an affiliate of the
International Council for Computers in Education (ICCE).
SMERC Library, Microcomputer Center San Mateo County Office of Education
333 Main Street
Redwood City, CA 94063
415-363-5472
The Microcomputer Center has been designated as the Software
Library and Clearinghouse to support the 15 TEC (Teacher
Education and Computer) Centers created in California by the
Investment in People Program. The Clearinghouse is charged with
providing software evaluations and related information to the 15
TEC Centers. Services (2-5 pm, M-F) include a demonstration
center,clearinghouse, evaluation center, software exchange,
workshop center and information center. You can copy public
domain software (SOFTSWAP) free of charge and review commercial
software. The special education division is just getting into
voice synthesis on the Apple.
[With a tip of our ABLEnews hat to John Kossowan.]
...For further information, contact CURE, 812 Stephen Street,
Berkeley Springs, West Virginia 25411 (304-258-LIFE/258-5433).
posted on:
ABLEnews...your resourceful friend. (1:262/4)
(277) Tue 23 Nov 93 9:24p
By: Cheryl Johnson
To: All
Re: restraint??
The agency I work for is working with a child with multiple
disabilities. He is 10 years old. The major problem facing the
family (they prefer keeping him at home rather than an institution)
is that the child cannot currently be transported due to attempts
to "escape from the car". The solutions being offered are 1).
additional one on one supervision (the state will probably not fund
that) and at the other end 2). find some kind of a restraint for
the individual while in the vehicle. Does anyone have any other
ideas. the first is not probable and the second seems too
intrusive.. thanks
posted on:
Nerve Center - Source of the SPINAL_INJURY echo! (1:261/1000)
(335) Sat 27 Nov 93 12:29a
By: Floria Antin
To: Cheryl Johnson
Re: restraint??
CJ> The agency I work for is working with a child with multiple
CJ> disabilities. He is 10 years old. The major problem
CJ> facing the family (they prefer keeping him at home
CJ> rather than an institution) is that the child
CJ> cannot currently be transported due to attempts to
CJ> "escape from the car"...
I assume that there is an Individual Education Plan (IEP) for the
child. If what is needed is one to one coverage while on the bus
or van toget to school shouldn't that be included in the ancilary
services that he needs. Any restraint would have to be one that
canbe easily unfastened for safety's sake and I assume proably
would not work.
Are there any agencies in your area that have expertise in
solving problems like this and obtaining needed services? If
there are any agencies dealing with the rights of children with
disabilities they may be able to help. Media coverage can also
work at times to get needed services. Find out if you can what
the rights of the child are based on the Federal law (sorry i
don't recall the number) mandating education for ALL children.
Hope you have success. Providing one on one is much cheaper than
providing services in an institution.
posted on:
WID East (1:109/304)
(344) Fri 26 Nov 93 9:41a
By: Marguerite Kendall
To: Cheryl Johnson
Re: restraint??
> The agency I work for is working with a child with multiple
> disabilities. He is 10 years old....the child cannot currently
> be transported due to attempts to "escape from the car"...
Have the doctors, suggested giving him a small tranqualizer.
Would anything like that work. I know it sounds cruel.
My sister-in-law in Nevada, as a total care foster child, 24-hour
care. I believe they have to restrain him in the car, but not
too intrusive.
posted on:
The Shephard's Board Alexandria VA (1:2602/115.40)
(417) Tue 30 Nov 93 4:39p
By: Dave Thomas
To: Cheryl Johnson
Re: restraint??
CJ> that the child cannot currently be transported due to
CJ> attempts to "escape from the car"...
What about doors like in police cars that cannot be unlocked from
the inside? and or some kind of seat belt you need a key to
unlock? Well I hope this helps?
Dave
posted on:
The Shadow BBS, Port Alberni, BC Canada {604-723-7746} (1:3410/270)
(282) Tue 23 Nov 93 5:32p
By: Gordon Gillesby
To: All
Re: SISTER KENNY BRAIN INJURY
The Sister Kenny Institute Brain Injury Clinic
There are relatively few programs in Minnesota that deal mainly
with people who have mild brain injuries as the result of stroke,
anoxia, closed head injury, nonprogressive brain tumor, aneurysm
or other causes. The Sister Kenny Institute Brain Injury Clinic
was developed specifically to work with individuals who have
minor brain injuries.
Resources for the Brain Injury Clinic are drawn from the highly
trained and experienced staff of Sister Kenny Institute. In
addition, an effort is made to involve the appropriate resources
from the community so that the individual's goals can be met.
Assessment and evaluation are very important initial steps at the
Brain Injury Clinic. This involves a thorough review of medical
records along with an interview with the client and his/her
significant others. The purpose of this evaluation is to
determine the cognitive, emotional and behavioral changes that
the person experiences related to a brain injury. In addition,
this also allows for an assessment of increased stress that may
have occurred since the injury.
After collecting all pertinent information, the Brain Injury
Clinic staff offer a treatment plan designed to help the client
learn new skills to compensate for residual difficulties. In
addition, a goal is to help the client adjust to changes in
his/her life that have occurred since the brain injury. The
ultimate goal for almost all clients is a return to work or some
other type of productive activity, e.g., volunteering, going back
to school. One member of the Brain Injury Clinic staff is
assigned as a case coordinator and serves as the primary contact
and advocate during treatment.
Over time, a person may need several types of therapy to
accomplish personalized rehabilitation goals. For example,
clients frequently participate in therapy to help them learn to
compensate for memory difficulties. In addition, they learn to
organize and plan daily activities so that they can more
successfully complete them. Improved written and oral
communication ability is also an important goal. It also is
important for individuals to structure their activities so that
they can complete the most difficult tasks when they are thinking
most clearly.
Physical problems that clients may experience also are
addressed. Of great importance in the rehabilitation of
individuals who have a mild brain injury is the area of
adjustment and coping. Most individuals participate in both
individual and group psychotherapy to help them learn to adjust
to the changes they have experienced. In addition, they learn to
manage anxiety and improve their self esteem and mood. Finally, a
variaty of community resources often are involved in the
rehabilitation program.
Depending on individuals' needs, participation in the Brain
Injury Clinic usually consists of therapies two-to-three days per
week for a period of three-to-six months. The Brain Injury
Clinic serves people who are 17 years and older with
mild-to-moderate brain injuries or nonprogressive brain
illnesses. Typically, individuals who participate in the Brain
Injury Clinic are in the post-acute phase of recovery, meaning at
least three months post-injury or illness. However, it is also
possible to consult with individuals who are in a more acute
phase to provide them education and direction so that future
problems may be avoided or minimized.
In order to participate in the Brain Injury Clinic individuals
need to be able to attend and participate in therapies without
supervision. Because of the need to participate in therapies at
least three times a week it is important clients live within a
comfortable commuting distance to Sister Kenny Institute.
Cost of the Brain Injury Clinic varies depending on the
individualized treatment plan. Many insurance companies will
reimburse for the cost of this program. If you would like more
information about the Brain Injury Clinic, please call
612/863-4420.
This article is from Access Press Newspaper and may be
reprinted with attribution; letters and submissions are
welcome. For more information or to submit material for
publication, please contact:
ACCESS PRESS
3338 University Avenue S.E.
Minneapolis, Minnesota 55414.
612/379-0989 (voice)
612/379-2730 (FAX)
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
(291) Tue 23 Nov 93 5:50p
By: Gordon Gillesby
To: All
Re: NEW RADIO PROGRAM
New Radio Program - Disabled and Proud - It's Not an Oxymoron
It is a new program that gives you insights into, ideas about, and
discussions of women in the disability culture. You can hear
artists, business women, disability rights activists, deep
thinkers and others talk about employment, transportation,
disability culture, media portrayal of people with disabilities,
theology, housing, hidden disabilities and on and on. Martha
Hage is host of the show which is brought to you by We Want You
to Know, a women's collective. Tune in the third Wednesday of
each month at 9:00 a.m. on KFAI, 90.3 FM. (The next show is
November 17, 1993. The topic will be Metro Mobility.)
For more information or if you would like to help with the
program, call Rachel O'Toole at 612/625-0607 or write KFAI, c/o
We Want You to Know - Martha Hage, Box 69, 1808 Riverside Avenue,
Minneapolis, MN 55454. You may also contact Martha at
612/339-4959.
posted on:
DRAGnet - Disability Information 612/753-1943 (1:282/1007)
(305) Sat 27 Nov 93 5:18p
By: Earl Appleby
To: All
Re: Cross Our Desk
ABLEnews Resource
Cross Our Desk...
More items cross our ABLEnews desk than my poor typing fingers
and our generous distributors--Hubs, SysOps--could carry. And
while Of Note, CURE's biweekly digest of disAbility/medical news,
has broken the 56K barrier, it only covers a modest portion of
the stories we review.
In keeping with our philosophy of sharing information, ABLEnews
will cite some of these uncovered stories from time to time. Here
are a few that recently came Cross Our Desk...
Story: Blind Vets Sue Over Exclusion From Fund Drive
Author: Marie Belson
Source: Washington Times
Date: June 21 1989
Quote: The Blinded Americans Veterans Foundation has filed suit
against the Office of Personnel Management, claiming it was
illegally excluded from the government's annual employee
charity drive. "It is just another example of an uncaring,
unfeeling bureaucracy taking the heart out of giving," BAVF
President John Fales said of his group's exclusion from the
1989 Combined Federal Campaign. "BAVF is an all-volunteer
foundation, and we don't hire high-priced professional fund-
raisers who seem to have OPM in their pocket. Other
charities barred from the campaign include the Spina Bifida
Association of America.
Story: China Sees US as Role Model for Integrating the Disabled
Author: Victoria Irwin
Source: Christian Science Monitor
Date: October 8, 1987
Quote: Deng Pufang sits quietly in his wheelchair, enjoying the
view od wild woods from this attractive Westchester County
(NY) home. Deng, the son of China's senior leader, Deng
Xiaoping, is in the United States as the head of a Chinese
delegation studying how the disabled are viewed and
included or not included in society here. Deng is clearly
impressed with the private home he is visiting. The one-
story house with wide hallways, double doorways, and no
steps was built to be accessible to people with wheelchairs.
Deng has been paralyzed from the waist down since 1968, when
he was attacked and forced out of the window of a Beijing
University dormitory by Red Guards during the Cultural
Revolution. There are an estimated 20 million people with
disabilities in China. CURE Comment: Mini-mansions in
Westchester county notwithstanding, a nation that practices
infanticide and euthanasia can scarcely be a positive role
model for another nation that commits the same hate crimes
against persons with disabilities.
Story: Deaf Star of 'Silence' Pushes Captioning
Author: Margaret Rankin
Source: Washington Times
Date: April 10, 1989
Quote: In last night's CBS airing of "Bridge to Silence," Oscar-
winning actress Marlee Matlin crossed some bridges of her
own. It was Miss Matlin's first speaking role and an
indication she has something to say to those in the hearing
community. Whereas last year, Miss Matlin was saying, "I am
an actress who just happens to be deaf," her current message
(is) "I am a deaf person who happens to have learned how to
speak." Inherent in Miss Matlin's new message is her desire
to inform others about her disability, which 18 million
Americans share in some degree. Miss Matlin recently became
a champion for the cause of close-captioning. "My goal is to
provide accessibility to the hearing-impaired community by
close-captioning all, and I mean all, video and television
communication, network and cable."
Story: Incurables Picket Office of Animal Rights Group
Author: Arlo Wagner
Source: Washington Times
Date: undated, 1989
Quote: Victims of incurable illnesses gave animal activists a taste
of their own medicine as members of an organization that
favors using animals for research picketed the Rockville
(MD) office of People for the Ethical Treatment of Animals.
"We just ignored them. We just carried on business as
usual," said Mary Vicky Kempf, who works in PETA offices on
Wyaconda Road. But PETA's business of saving animals is
threatening the lives of people with incurable illnesses,
said Steve Carroll, executive director of the 4-year-old
iiFAR (incurably ill For Animal Research). The lives of
numerous members of iiFAR have been saved or extended
because of developments made possible by animal research.
Mr. Carroll was 19 in 1971 when burned over 50 percent of
his body in an airplane crash. "If it hadn't been for
several procedures developed with animals, I would have died
during the first weeks," Mr. Carroll said.
Story: Lifetime Design
Author: Michael Walsh
Source: Seattle Times/Post-Intelligencer
Date: February 9, 1992
Quote: As the Americans with Disabilities Act is implemented in
stages over the next three years, you'll begin to see some
changes in public accommodations. Restaurants, retail
stores, and other buildings will be modified to be
accessible to the disabled about 43 million Americans. The
big news, though, is that the new consciousness about public
accessibility i beginning to trickle down to residential
design. Finally. The newest trend in home design takes into
account the fact that people age and that their physical
abilities diminish over time. It also takes into account the
fact that any of us may be less than able-bodied
periodically through our lifetimes.
Story: Little People Stress Positive Attitudes at Weeklong
Conference
Author: Leslie Williams
Source: Baltimore Evening Sun
Date: July 3, 1989
Quote: Young Adam Brown couldn't wait to explore beyond the
perimeter of the downtown Baltimore hotel. The 12-year-old,
a person of short stature attending the Little People of
America Inc. conference, informed his parents he was going
to their room to change into an outfit he had coordinated
days before and was off with friends to have fun. Ernest Ott
(is) LPA director of the mid-Atlantic region. "This is the
biggest conference we've ever had," said Ott, 34. "We
discuss what happens in the life of a short stature person,
prejudice, lack of understanding, just out and out bigotry."
LPA was founded in 1957 by Billy Barty, an actor featured in
the movies "Willow" and "Legend." 50 dwarf athletes turned
out for the National Dwarf Games, which included track and
field events and basketball. The LPA conference will address
the tossing of dwarfs as a barroom sport or in traveling
shows, a "sleazy type of entertainment, like a wet T-shirt
competition," said Ott.
Story: Marathon Man to Be TV 'Star'
Author: Tom Carter
Source: Washington Times
Date: October 25, 1989
Quote: Wheelchair athlete Ken Carnes has captured the attention of
CBS and has signed an agreement to have his life story made
into a TV movie. After winning the Moscow marathon on August
12, the 33-year-old resident of Morningside, MD, returned to
Poland to (win) the 62.1-mile Calasis Super Marathon in
world-record time. Next week Carnes will seek his first
Marine Corps Marathon victory. The movie deal came about as
a result of a National Public Radio story on Carnes last
spring. At 17, Carnes was a promising motocross racer when
he wrecked his 125cc motorcycle and became paralyzed from
the waist down. "I could not come to grips with my
disability, and I stayed in a cloud [of alcohol and
prescription pain killers] to block it out," he said. His
third drunk driving conviction motivated him to turn his
life around. He began attending Alcoholics Anonymous
meetings and became drug- and alcohol-free. "I had a new
life," he said. "I needed something to do with it." A
volunteer active in disabled athletics stopped him in a
parking lot and invited him to enter a race.
Story: Psychiatric Units Pay Price for Abuse
Author: Susan Moffat
Source: Seattle Herald
Date: February 9, 1992
Quote: She was feeling deeply depressed. The advertisement on the
late-night TV said she could get free counseling. So, the
woman, a 37-year-old mental health professional, called an
800 number and was given an address. When she arrived at the
location, which turned out to be Los Altos Hospital in Long
Beach, California, a clerk confirmed that she had insurance
coverage. Then, the woman says, she had no opportunity to
talk to a psychiatrist or a counselor before she was dragged
away by men in white coats and committed against her will to
a ward filled with seriously disturbed mental patients. "I
was scared to death. I was just put away," says the woman,
who asked that her name not be used.
Story: Save Money: Help the Disabled
Author: James S. Brady
Source: New York Times
Date: August 29, 1989
Quote: Astonishingly, it is legal under federal law for a
restaurant to refuse to serve a mentally retarded person,
for a theater to deny admission to someone with cerebral
palsy, for a dry cleaner to refuse service to someone who is
deaf or blind. People with disabilities the largest minority
in the U.S. were left out of the historic Civil Rights Act
of 1964. Twenty-five years later, discrimination against
disabled people is still pervasive. Experience has shown
that no civil right has ever been secured without
legislation. A law such as the Disabilities Act would insure
that facilities and employers public and private maintain
minimum standards of accessibility. There are 87 million
people in America who live with some sort of disability. I
never thought I would be one of them. But disability can
happen to anyone. Since I took a bullet in the head eight
years ago during the assassination attempt on Ronald Reagan,
I have come to know the daily problems, frustrations, and
needs of those who live with disability. We do not want pity
or sympathy. All we want is the same civil rights and
opportunities that all citizens have. We want fairness,
acceptance, and the chance to contribute fully to our
nation just like everyone else. CURE Comment: Experience has
also shown that no civil rights law has ever been enacted
without struggle. Eternal vigilance is the price of freedom.
Story: 'Yes, We Want Him'
Author: Michael Ryan
Source: Parade Magazine
Date: February 23, 1992
Quote: On a fall day in 1985, John Politano hears the news that too
many parents have heard in the past decade. Politano's son,
Johnny, had been hospitalized for several weeks with a
mysterious virus. John made his living as a steelworker
until heart disease forced him to retire. But his wife Josie
feared he was not strong enough for the news she had to give
him. "Johnny has AIDS." Johnny came home to his parents'
house in Falmouth, Massachusetts. On his 25th birthday, they
invited 100 relatives to his last birthday. Not a single
relative came. The next month, Johnny died. "One day in
1988, we were sitting in the house, and we happened to be
crying about our son," John says. "The phone rang. It was a
friend of Johnny's who worked at a hospital. He said, 'We
have a baby up here who's 2 months old. Nobody wants him.'
The child's story went straight to John's heart. "The mother
had AIDS, and the baby was HIV-positive."
En Passant
Air Force Won't Help Dying Man Fly Home (Washington Times, 10/3/89)
Avram Brody, a civilian Department of Defense computer
operator, who worked at Edwards Air Force Base in
California, was advised by doctors in July that he had
only weeks to live as the result of an inoperable brain
tumor. Despite Congressional and White House
interventions, the Air Force refuses to provide an air
ambulance ride home to his native Massachusetts, where
Brody wishes to be close to his mother and family.
According to Major Fran Tunstall even if Brody's "illness
were caused by his government work, if the trip was
necessary to receive some special treatment, or if there
were some chance for survival," he would still have to
pay an estimated $30,000 for the flight.
Cerebral Palsy Victim, 27, Takes Her First Steps (MJ, 5/27/87)
"I kind of feel like Cinderella. I keep waiting for
someone to tell me the clock's going to strike 12 and I'm
going home." Tina Murphy, of Gillette, WY, on taking her
first steps since birth. Doctors in New York implanted
electrodes in her spine, between her shoulder blades, to
stimulate previously blocked nerve impulses between her
brain and legs. The electrodes are attached to a receiver
implanted under her skin on her left side. The
transmitter is about the size of a small transistor
radio, and Tina carries it in her purse or on her belt.
Dwarf-Throwing Deplored, Defended (Washington Times, 10/31/86)
Australia's People magazine will stage a "dwarf throwing
and bowling contests" between teams from Australia and
England in Brisbane Sidney, and Melbourne. "We're going
to strap a skateboard to their stomachs and roller skates
to their arms, and roll them towards the skittles," said
editor David Naylor. Jennifer Johnson, secretary of the
Little People's Association of Australia in Victoria
denounced the event as humiliating ad degrading to the
dwarf community.
High-Tech Wheelchair Can Climb Mountains (Seattle Times, 2/13/92)
The ACCESS Mobility System, manufactured by Quest
Technologies in Sunnyvale, California, has tank-like
treads for climbing stairs and rolling over other
obstacles such as curbs, but its $27,500 price tag is
outside the range of most potential users.
Lawsuit Says Doctor Left Cotton Balls in Boy's Brain (SH, 2/23/92)
Neurosurgeon Dr. G. Michael Weise and Multicare Health
Systems, operator of Mary M. Bridge Children's Hospital
and Tacoma General Hospital, are accused of leaving
cotton balls in the brain of Trevor Hagman, 5, during
removal of a tumor.
Editor's Note: Ellipses omitted to facilitate reading.
...For further information, contact CURE, 812 Stephen Street,
Berkeley Springs, West Virginia 25411. (304-258-LIFE/258-5433).
posted on
ABLEnews...for news Of Note. (1:262/4)
(323) Wed 24 Nov 93 7:55a
By: Gerard Droege
To: All
Re: INTERNET E-MAIL!!
ANNOUNCEMENT
FREE INTERNET E-MAIL SERVICES !!!!
With this message, The Patient Advocate BBS, a medical/health
board in San Diego, CA is proud to announce full free Internet
E-mail send/receive services to ALL USERS. Tomcat (offline
reader) compatible.
Internet is the worlds largest computer network. Medical/Health
Newsgroups also now available for reading, posting, or
downloading. Internet E-Mail means more than just faster letters
and memos. See for yourself and connect with the world.
The Patient Advocate does NOT ask for registration fees of any
users, local or long distance. We are on-line 24 hours,
2400-16800 connects at ..... (619) 546-1536. Upgrades are
completed on a daily basis.
For your health,
Gerard Droege, M.D. (Sysop)
posted on:
The Patient Advocate, San Diego, CA 619-546-1536 (1:202/742)
(340) Sun 14 Nov 93 11:32a
By: Arlette Lefebvre
To: All
Re: Accessible vacations
ACCESSIBLE VACATIONS IN THE NORTHEAST!
TASC Travel Adventures provides fully staffed and accessible
vacations and weekend getaways for individuals with disabilities,
all throughout the Northeast... Maine, Pennsylvania Dutch
Country, Cape Cod, Tornoto, Niagara Falls, and more, as well as
to Florida and other destinations. All departures are from the
Boston area, and pickup can be arranged at Logan Airport, as well
as custom tour packages, etc. Any special service that is needed
can be arranged. Trips are priced competetively, and include
professional staff who are trained and experienced in meeting the
needs of the dufferently abled. The vacation programs are fun,
exciting, supervised, and safe. All staff are bonded, insured,
carefully screened, and good at what they do.
I am the Executive Director of the organization, and would be
happy to speak with anyone interested in our programs. Our agency
is young... only two years old, and the TASC TRAVEL ADVENTURES
Program is our newest endeavor. We were established in 1991 as an
advocacy agency to help people gain the services they need from
providers, and have since expanded to providing temp staffing,
custom home programs,and now, vacations and weekend getaways.
TASC is a Massachusetts Nonprofit Corporation. Please call or
write for more information on our Travel Adventures Program.
TASC TRAVEL ADVENTURES
Therapeutic Advocacy & Support Centers, Inc.
27 Water Street, Suite 112
Wakefield, MA 01880
Phone: 617-246-2446
Or drop a line on the INTERNET to BPELTASC@world.std.com.
Our catalog for 1994 programs will be out in about two weeks!
a bientot, I hope....?
docteur froggie.
posted on:
ADAnet: Ability OnLine - Toronto Canada - (416) 650-5411
(348) Fri 26 Nov 93 6:40a
By: Bob Lantrip
To: Eleana Boyer
Re: Re: Post Polio, etc....
EB>I would also be interested in getting information as my older
sister is a post polio survivor and is having more medical
issues, back problems, colitis etc. Thanks!
Eleana - An excellent source for information on Post-Polio Sequelae
is:
Richard L. Bruno, Ph.D.
Kessler Institute for Rehabilitation
240 Central Avenue
East Orange, New Jersey 07018
He'll send you a very informative packet FREE.
Another good source is the POST_POLIO echo, of which I'm
co-moderator. It's a FidoNet echo and can be picked up by any
sysop who is a member of FidoNet. It's also gated by ADAnet, if
your sysop happens to be a member of that network.
Hugs...Bob
posted on:
IRONSIDES BBS. (405) 226-7126 (1:19/131)
ABLEnews Review is published by CURE Ltd. For further information,
contact CURE, 812 Stephen Street, Berkeley Springs, West Virginia
25411 (304-258-LIFE/258-5433).
(24) Tue 2 Nov 93 3:34p
By: Gjoseph Peck
To: All
Re: Were "you" Contacted?
* Message originally :
From: Gjoseph Peck
To : All
Date: 02 Nov 93 15:21:28
Area: Vietnam Veterans
DEPARTMENT OF VETERANS AFFAIRS
OFFICE OF PUBLIC AFFAIRS - NEWS SERVICE
WASHINGTON, D.C. 20420
(202) 535-8300
FOR IMMEDIATE RELEASE
VA ANNOUNCES NATIONAL SURVEY OF VETERANS
The Department of Veterans Affairs is announcing a national
survey of veterans to obtain data on characteristics of the
veteran population and their use of VA benefits. The information
will assist the Department in planning for veterans health care
needs and changes in VA's medical system.
Indepth telephone surveys will be conducted, beginning in June
through October, by Klemm Analysis Group and Westat under a $2.3
million contract. The survey will involve a sample of 10,600
veterans. Some 5,000 will be selected by a random digit telephone
dialing procedure. Selection of the remaining 5,600 will be
obtained from three sets of VA files: the Compensation and Pension
File, the Patient Treatment File and the Outpatient Clinic File.
The sample of 5,600 has been designed to address health-care reform
issues that VA is reviewing and will reflect use of VA and non-VA
medical care by service-connected and nonservice-connected
veterans. Veterans' participation is voluntary, and the
confidentiality of all responses will be strictly maintained by the
contractor.
The data will allow VA to follow changing trends in the veteran
population, make comparisons of characteristics of veterans who use
VA programs with those who do not, and provide a current resource
of data for continuing analysis.
The study is the fourth in a series of national surveys of
veterans. VA also has conducted a survey of medical system users
and a survey of disabled veterans. A report on the results of this
year's survey is expected in 1994.
The "survey" is over now (ended October, 1993) ... but ...
The nice thing about "...the confidentiality of all responses will
be strictly maintained by the contractor." is that they can CREATE
the responses rather than use ACTUAL, REAL data gathered from
veterans throughout the United States!
$2.3 MILLION dollars! I know "I" wasn't contacted ... and many,
many veterans that I know weren't either.
Just THINK what that $2.3 million dollars could have purchased in
NEEDED and NECESSARY veteran-oriented services!!!
Were "YOU" contacted?
Input at VETLink #1 for the benefit of ALL America's proud veterans!
posted on:
VETLink #1 - Home of NamVet (413) 443-6313 (1:321/203.0)
(33) Wed 3 Nov 93 12:31a
By: Gjoseph Peck
To: All
Re: A Grateful Nation Remembers
* Message originally :
From: Gjoseph Peck
To : All
Date: 03 Nov 93 00:10:31
Area: Vietnam Veterans
VETERANS DAY - HOW IT WAS NAMED
"A Soldier Known But to God"
<From "A Grateful Nation Remembers" 1990 - Veterans' Day National
Committee>
In 1921, an American soldier - his name "known but to God" - was
buried on a Virginia hillside overlooking the Potomac River and the
city of Washington. The Arlington National Cemetery burial site of
this unknown World War I soldier became the personification of
dignity and reverence for America's veterans.
Similar ceremonies occurred earlier in England and France, where
an "unknown soldier" was buried in each nation's highest place of
honor (in England, Westminster Abbey; in France, the Arc de
Triomphe).
These memorial gestures all took place on November 11, giving
universal recognition to the ending of World War I hostilities at
11 a.m., November 11, 1918 (the 11th hour of the 11th day of the
11th month). The day became known as "Armistice Day."
Armistice Day officially received its name in America in 1926
through a Congressional resolution. It became a national holiday
12 years later by similar Congressional action.
If the idealistic hope had been realized that World War I was
"The War to end all wars," November 11 might still be called
Armistice Day. But shortly after the holiday was proclaimed, World
War II broke out in Europe and shattered the dream. Sixteen and
one-half million Americans took part. Four hundred and six
thousand died. The families and friends of these dead longed for a
way to honor their memory.
"To Honor Veterans of All Wars"
An answer to the dilemma of how to pay tribute to those who had
served in this latest, great war came in a proposal made by
Representative Edwin K. Rees of Kansas: Change Armistice Day to
Veterans Day, and make this an occasion to honor those who have
served America in all wars.
President Eisenhower, in 1954, signed the bill proclaiming
November 11 as Veterans Day, and he called for Americans everywhere
to rededicate themselves to the cause of peace.
On May 30, 1958, two more unidentified American war dead were
brought to Arlington Cemetery from overseas and interred in the
plaza beside their Comrade of World War I. One was killed in World
War II, the other in Korea. A law passed in 1973 provided for the
interment of an unknown American who lost his life in Southeast
Asia during the Vietnam era. For several years no qualifying
remains were discovered so a memorial plaque was placed in the
Amphitheater's Memorial Display Room. On Memorial Day 1984,
however, the Unknown Serviceman from that conflict was placed "In
Honored Glory" alongside his fellow countrymen.
To honor these men, symbolic of all Americans who gave their
lives in all wars, an Army honor guard, The 3d United States
Infantry (The Old Guard), keeps day and night vigil.
"Date Too Significant to Change"
A law passed in 1968 changed the national commemoration of
Veterans Day to the fourth Monday in October. It soon became
apparent, however, that November 11 was a matter of historic and
patriotic significance to a great number of our citizens.
Congress, therefore, enacted legislation (Public Law 94-97) which
returned the observance of this special day to its tradional date
beginning in 1978.
"Once Belonged to Robert E. Lee"
Focal point for ceremonies conducted by the Veterans Day
National Committee continues to be the Arlington Memorial
Amphitheater built around the Tomb of the Unknowns at Arlington
National Cemetery. The site, established in 1864 and now operated
by the Department of Defense, lies on property that once belonged
to General Robert E. Lee.
At 11 a.m. on Veterans Day a combined color guard representing
all military services honors the Unknowns by executing "Present
Arms" at the Tomb. The Nation's tribute to its war dead is
symbolized by the laying of a Presidential wreath. The bugler
sounds "Taps." The balance of the ceremony, which includes a brief
address, takes place at the Amphitheater.
Veterans Day ceremonies at Arlington and elsewhere in the Nation
are coordinated by the President's Veterans Day National Committee.
Charied by the Secretary, Department of Veterans Affairs, the
group has an executive committee which includes representatives of
eighteen national veterans organizations chartered by Congress.
The remaining members represent other national veterans service
associations.
The governor of each State and the U.S. Territories appoints a
Veterans Day chairperson who, in cooperation with the National
Committee, plans, arranges and promotes appropriate ceremonies
within his or her jurisdiction.
* * * * *
Input at VETLink #1 for the benefit of ALL America's Proud Soldiers
and their families
posted on:
VETLink #1 - Home of NamVet (413) 443-6313 (1:321/203.0)
(39) Sat 6 Nov 93 12:50a
By: Earl Appleby
To: Gjoseph Peck
Re: A Grateful Nation Remembers
Thanks for posting that moving tribute to our veterans, Gjoe.
Grateful is as grateful does and ABLEnews, as well as CURE, wants
to do whatever we can to stand in solidarity with our veterans
and their families...as well as active duty soldiers and
dependents (like my brother Sgt. Dwight David Appleby, a veteran
of Dessert Storm, now serving our country in Italy, his wife
Krista, their daughter Jocelyn, 4, and their unborn baby, due in
March).
We are proud to count VETLink 1--other VETLink boards like Jeff
Patterson's Falcons Nest (VETLink 47)--as cherished members of
our ABLEnews network. (We hope other vet-related boards will join
us here.)
Let us work together to ensure the remembrance of our Nation is
more than merely rhetorical.
In admiration and friendship,
Earl
posted on:
ABLEnews: Justice Delayed = Justice Denied! (1:262/4)
(41) Sat 6 Nov 93 12:53a
By: Earl Appleby
To: All
Re: More V.A. Victims
ABLEnews Extra
One of the best ways we can honor our veterans--living
and dead--is to care for their comrades who need our
concern today. CURE is committed to fighting for the
rights of all veterans to quality medical care, a
practice all too often denied those treated in V.A.
Medical Centers. Last May, we reported on the deaths of
Stephen Smolenski, 80, and Thomas Riggins, 70, of
insulin shock after what the V.A. called "accidental
medication error." (If anyone missed that item or would
care to see it again, I'd be pleased to repost my
story: "Deja Vu at Cleveland V.A." upon request.)
Today's account continues our chronicle of the body
count of American veterans in V.A. "care." --ABLEnews
Editor
More V.A. Victims
Omaha, Nebraska--The toll from a mixup in medication for four
veterans hospital patients stands at one dead, another in a coma,
and two still recovering.
The drug maker admits it warned other hospitals that similarly
packaged medicines could be mixed up, but initially didn't
include Veterans Administration hospitals.
All four patients were given muscle relaxer instead of an
antibiotic July 8 at the Omaha Veterans Administration Medical
Center and had to be resuscitated.
A 72-year-old woman died two days later.
And on Sunday, the wife of a 76-year-old man said he was in a
coma and might not survive.
Leland Goodnight is a World War II veteran from Stanton, Iowa,
who was in the hospital for treatment of a broken hip and
subsequent infection, said Mrs. Goodnight, 73.
Hospital director John Phillips confirmed Goodnight was in a
coma. He declined to speculate whether the wrong medication was
related to his condition and whether Goodnight had brain damage.
A pharmacist, pharmacy technician, and three nurses were
transferred to administrative duties pending the outcome of
investigations, Phillips said.
Phillips has said that errors apparently occurred during the
process of preparing and labeling doses of the post-surgical
antibiotic, metronidazole and sending them to the patients'
floors.
Labels on the medication bags indicated that they contained the
prescribed antibiotics when in fact they contained the muscle
relaxant, mivacurium chloride, he said.
The manufacturer's packaging of the two drugs was similar, but
that doesn't absolve the V.A. from the responsibility of double-
checking labels, V.A. spokeswoman Margaret Keel said.
Pharmaceutical manufacturer Burroughs Wellcome hired a company to
alert hospitals nationwide about the possible problem in June
following a fatal drug mixup in Illinois in April, but
accidentally omitted V.A. hospitals, said spokeswoman Mari Toth.
Warnings were issued to V.A. hospitals on Friday.
The alerts included fluorescent red stickers that could be placed
on bags containing the muscle relaxant to further differentiate
the products, she said, adding that the company also plans to
recontact hospitals and to change its packaging. CURE Comment:
Which it apparently did not do after the death in Illinois.
[Medication Mixup at V.A. Hospital Leaves 1 Dead, 1 in Coma,
Martinsburg Journal, 7/19/93]
Editor's Note: Ellipses omitted to facilitate reading.
...For further information, contact CURE, 812 Stephen Street,
Berkeley Springs, West Virginia 25411. (304-258-LIFE/258-5433).
posted on:
ABLEnews...beyond the headlines. (1:262/4)
(52) Thu 4 Nov 93 10:10a
By: Warren King
To: ALL
Re: COLA passed for disAbled Vets
Hello ALL!
From the VIRGINIAN-PILOT/LEDGER-STAR 11/3/93
House OKs disAbled vets' cost-of-living increase
WASHINGTON - The House approved a 2.6 percent cost-of-living raise
Tuesday for the 2.2 million veterans receiving compensation for
disabilities resulting from military service.
The bill, supported by the president, now must go back to the
Senate, which had passed a version without some amendments attached
by the House.
The bill provides a cost-of-living adjustment, or COLA, based on
the estimated rate of inflation. The new payment rates would go
into effect Dec. 1. It also raises compensation rates for widows
and children of veterans who died of service-connected causes by
2.6 percent.
Regards,
Warren
posted on:
HandiNet B B S Virginia Beach, VA (804)496-3320 (1:275/429)
(74) Thu 11 Nov 93 12:37a
By: Earl Appleby
To: All
Re: God Bless the Vet!
ABLEnews Mail Bag
Dear ABLEnews Friend,
As previously noted in this conference, ABLEnews (as its
sponsor CURE) believes our Nation should salute our veterans,
past and future, 365 days a year with deeds--not merely words.
Nonetheless, Veterans Day calls for a special public witness to
the appreciation America owes our vets.
Not long ago, I was privileged to attend an international
seminar in our Nation's capital, during which Admiral Thomas
Mohrer related a story of how some scalliwag had asked
Congressman Mendell Rivers with dripping sarcasm: "What has the
veteran ever done for you?" To which impertinence the South
Carolina Democrat simply replied: "Why absolutely nothing, sir .
. . except die."
As I told the press during CURE's campaign to defend Sgt. Arnold
Shumosic against the V.A.'s drive to starve him to death (a crime
that was punished by hanging at Nuremberg), "It is an honor for a
soldier to die on the battle field for his country, but for his
country to kill him in his hospital bed is a disgrace."
Let's truly honor our veterans by combating this disgrace with
the courage and determination the field of honor always demands.
I wish every veteran, every service man and woman, their
families, and friends a Veterans Day that honors the highest
ideals of our Republic--the very ideals which it has so
tragically abandoned along with the veterans who have sacrificed
so dearly in their defense.
God bless you all!
In solidarity,
Earl
ABLEnews Moderator
posted on:
ABLEnews...Dare to care! (1:262/4)
(159) Thu 11 Nov 93 5:16p
By: Patrick Ivey
To: All
Re: Vets
Thanks! And I hope you never have to work again.
posted on:
Pat's House - Coos Bay, OR USA (1:356/3.21)
(262) Thu 25 Nov 93 10:46a
By: Earl Appleby
To: All
Re: Not the Best
ABLEnews Mail Bag
"Veterans Do Not Receive the Best Medical Care"
I would like to comment on a letter which appeared in The Sun
(October 14) from Jesse Brown, secretary of the Department of
Veterans Affairs.
Secretary Brown's letter concerns me because of some assertions
that he makes and gives the reader the impression that everything
is 'bright and sunny' in the Veterans Administration medical
system.
Mr. Brown believes that the VA medical system can deliver timely
and accurate medical treatment and actually compete with other
medical providers. This cannot be further from the truth, as most
veterans will admit.
One of the most important criteria in assessing medical providers
is customer satisfaction. I suspect that Mr. Brown only goes into
a VA Medical Center with a large entourage after the medical
center director has had an opportunity to put his or her best
foot forward advise all staff to be ready for the visit.
I, for one, would be delighted to hear about any "patient
satisfaction" studies that the VA has done. If the VA cannot on a
consistent basis provide superior service, why should anyone
seriously consider selecting it as a health provider?
I am afraid there is too much anecdotal evidence from those who
have used VA medical facilities that supports the contention that
veterans do not receive the best medical care.
Ask a veteran if he or she would rather be treated at John
Hopkins Hospital or a VA medical center, and the answer will be
anywhere but a VA medical center.
I have had my fill of having to wait weeks or months to be seen
in a clinic by a third-year resident who will be gone in a few
weeks.
I'll stick with my health care provider, who requires board-
certified or eligible physicians who treat me as an individual
rather than just as something to learn from during residency.
Robert L. Polinsky
Columbia, MD
[Inadequate Care, Polinsky, letter-editor, Baltimore Sun,
10/29/93]
CURE Comment: My father, Earl Appleby, Sr., whose courage
inspired the creation of CURE, was a VA outpatient during the
decade he lived in coma. There is a great deal I shall be forever
grateful for, particularly, his physician, Dr. Eugene Cohen,
chief of medicine, of the Newton Baker VA Medical Center, in
Martinsburg, WV, now retired. But CURE could add many pages to
the "evidence" Mr. Polinsky cites from my Dad's case and from
those of many other vets that CURE has been privileged to defend.
Mr. Polinksky's question: "Why us the VA?" begs the question of
whether all veterans have the choice he is able to exercise. CURE
believes the VA medical system must be upgraded NOT abandoned. At
the same time, we believe it provides an example of the danger of
any health reform that would deny patients the right to exercise
the choice Mr. Polinsky rightly reveres.
...For further information, contact CURE, 812 Stephen Street,
Berkeley Springs, West Virginia 25411 (304-258-LIFE/258-5433).
posted on:
ABLEnews...beyond the headlines. (1:262/4)
(388) Mon 29 Nov 93 12:36p Rcvd: Wed 1 Dec 8:29a
By: Rev. Dave
To: Earl Appleby
Re: Not the Best
Re: Not the Best
I recall, once when a PATIENT in a V.A. psyche ward a business
man who had been in a car accident & had broken some bones. After
his surgery they put him up on the psyche floor because there
were NO BEDS available elsewhere. THEN someone lost his
records!!!!! It took MONTHS for his family to convince the V.A.
that he was NOT nuts and to get him released from the hospital.
This was in St. Louis, John Cochran V.A. Hosp. 1967.
Then in 1971 ( I was heavily involved in the hippy/drug thing
after NAM) I was in the V.A. hosp. in Miami. When I was being
transfered to the hosp. in Augusta, Georgia....I was put in
CHAINS, ankle, waist & wrist type, during the transfer process.
Mind you I had been (formerly) charged with NO CRIME nor did I
have ANY RECORD OF VIOLENCE. I then spent the first 30 days in
Augusta in CHAINS as that was the COMMON treatment of NEW
arrivals. We were led everywhere in these CHAINS by club welding
morons who regulary hit us just for GRINS.
Today I am the Director of a school and service center for adult
disabled. I have clients who are in the V.A. hospital in La Jolla
(San Diego). It seems that ALL PSYCHE patients are still (like 25
years ago) medicated with Thorazine, Stellizine, Haladol &
Melliril REGARDLESS of WHY they are there in the first place. I
also will mention the scandal of a few years back where THAT
hosp. was BUSTED for SELLING BODY PARTS! And our govt. complains
about HUMAN RIGHTS abuses in RUSSIAN Psyche hospitals!!!!
Rev. Dave
posted on:
THE CHURCH I R H P BBS (1:202/1709)
ABLEnews Review is published by CURE Ltd. For further information,
contact CURE, 812 Stephen Street, Berkeley Springs, West Virginia
25411 (304-258-LIFE/258-5433).
Comments
Post a Comment