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* Inside This Issue:

• Editor's Note -John Pistorius

• Money For Support Groups in PA

• Seeing Million Dollar Baby From My Wheelchair-Diane Coleman, J.D.

• Modern Crusader Lyrics-by Enigma

• Using Your Head -What's Inside Your Bubble?-by Jeff Keller

• The Dollar Stretcher -Gary Foreman

• "Medicaid: A Time to Act" -Call Toll Free March 8, 2005

• Computer Tip of the Day -Bob Osgoodby

• Disability & The Social Security Debate

• COLLECTIVE ADVOCACY WORKSHOPS

• Support Group Development Tools -Free help for starting or running peer support groups

• Upcoming Support Group Meetings

• Thank You!

• B-NEWS Subscriber Policy

• Subscribe/Unsubscribe Instructions

• ETC.

* Editor's Note

 

Hi Folks,

 

Just a short note this time. This edition has taken some time to pull together because of the volume of material available. I've gone through as much as possible and present my picks for your consideration.

 

I have more Cognitive Dissonance material to finish. With so many different things gnawing away at my time, it has become difficult to sit and finish editing the next essay in the series.

 

I'm a bit 'under the weather' right now which has delayed this edition. Please accept my apologies.

 

Till next time-
John

* Seeing Million Dollar Baby From My Wheelchair

By Diane Coleman, J.D.

 

Many people have told me that they don't think they could "stand to live" if they needed a wheelchair like me. That's why I felt a little queasy about going to see Million Dollar Baby. But helping plan the first disability protest of the movie, in Chicago, I had a duty to see it.

 

I thought I was emotionally well-prepared. I already knew many details about the last half hour - the injury, hospital, nursing home and killing scenes - from disabled colleagues.

 

But my preparation was more than that. When I grew up, through braces and surgeries, my elementary school teachers called me "Mary Sunshine." When I completed UCLA law school from a motorized wheelchair, I was called "inspirational." I took it as the highest complement to be told by some non-disabled person that they "didn't think of" me as "handicapped." When I was excluded or rejected in my work or social life, I could always understand the other's perspective.

 

Even the few times someone would actually say they would rather be dead than be like me, I would just politely forge on.

 

In my early thirties, sharing experiences with disabled friends, I finally learned how to recognize and constructively resist discrimination. The connection and insights we shared gave me a new lens through which to view my life. Most importantly, I learned to look more clearly at the ways I had internalized the stigma and shame of disability, and began the lifelong struggle to undo the damage done by growing up in isolation from a true sense of community and mutual respect.

 

In short, a "Jerry's Kid" became a "telethon protester." Over the last two decades of involvement in the disability rights movement, I have faced arrest many times in non-violent protest to help win the right to ride the bus, and the right to not be forced into a nursing home because of the need for assistance to live. During Kevorkian's heyday in assisting the suicides of middle-aged disabled women, I founded a national disability rights group called Not Dead Yet. Using a ventilator at night since 2002, it's become
even more personal.

 

I came into the theater, wanting to flee quickly when Million Dollar Baby was over. I sat through the whole movie without removing my coat, scarf, hat or gloves.

 

Queasy stomach, wish to flee - not typical for me anymore. Moreover, the threat of assisted suicide and euthanasia are daily fare for Not Dead Yet. We fight to be heard over the loud voices of players on both sides whose interests should be readily seen as, at best, secondary to the organized voice of those society says are "better off dead." So many of us have died too young, never getting a real chance to live.

 

In the midst of all that reality, what makes a fictional movie like Million Dollar Baby so disturbing that I want to flee?

 

As the movie unfolded to its star-powered conclusion, audience members sniffled in pitiful admiration of Maggie's determination to die rather than move on and leave her non-disabled life behind. They were deeply moved by Frankie's redemption through fatherly love, his wish to help her live and his profound sacrifice in giving up everything he had to free her from her "frozen" body. This is the bittersweet ending that inspires so much acclaim.

 

As I watched, I thought about the impact the movie would have on severely disabled people surrounded only by doctors, nurses and mixed up, grieving family and friends.

 

Swept along in the emotion, could any audience member imagine a happy and meaningful life for Maggie as a quad? For him or herself as a quad?

 

It took me another week to get in touch with my deeper personal discomfort.

 

Could people imagine a happy and meaningful life for me? Could they see that I am not living a fate worse than death?

 

I've always felt a tension between how others see me and how I see myself. By now, that tension, and my coping mechanisms, are way below the surface. Denial, the fantasy of acceptance, I have used whatever I could to endure and manage over 50 years of those looks, and looks away, to be who I am out in the world everyday.

 

But now I am forced to see how critics and audiences love this movie, resent our anger, and extol the virtues of open public discussion of euthanasia based on disability. My fantasy is ripped away.

 

If I'd been truly prepared, I'd have brought a sign to hold up, saying, "I Am Not Better Off Dead." I would have looked into every face exiting the theater, insisting that they see me, and this simple yet apparently incomprehensible message.

 

 

Diane Coleman, J.D. is President of Not Dead Yet and Executive Director of Progress Center for Independent Living, in Forest Park, Illinois.
 

* MODERN CRUSADERS LYRICS

By ENIGMA

Don't look back
The time has come
All the pain turns into love

We're not submissive, we're not aggressive
But they think we can't defend

Stand up, join us, modern crusaders alive
We have the power
to face the future
Cause we are the fighters
Just fighting for our rights

They're accusing, like always without knowing
What is just fiction or what is the truth
They have no mission, they have no passion
But they dare to tell us what's bad and what's good!

Stand up, join us, modern crusaders alive
We have the power
who'll face the future
Cause we are the fighters
Just fighting for our rights

Est affectus
Et defectus
Semper in angaria.

Quod per sortem
Sternit fortem,
Mecum omnes plangite!

Nunc obdurat
Et tunc curat
Ludo mentis aciem,
Egestatem,
Potestatem
 

(translation: Drive on
And weighted down,
Always enslaved.

Since fate
Strikes down the strong man,
Everyone weep with me!

First oppresses
And then soothes
As fancy takes it;
Poverty, Power )

Stand up, join us, modern crusaders alive
We have the power who'll face the future
Cause we are the fighters
Just fighting for our rights

Stand up, join us, modern crusaders alive!

(Editor's note: Lyrics originally published on a CD called The Screen Behind The Mirror. It is also known as Enigma 4. Originally published by Virgin Records in 2000."

* Using Your Head

 

What's Inside Your Bubble?

by Jeff Keller

Have you ever seen the television movie, "The Boy in the Plastic Bubble?" Released in 1976 and starring John Travolta, the movie was based on the true story of a teenage boy whose immune system did not function. As a result, he was vulnerable to the most common germs that all of us come in contact with every day.

Since the boy could die from exposure to germs, he had to live inside a plastic bubble, which served as a sterile environment to protect him.

There's a connection here to our lives. In a way, we all live inside a "bubble," an environment we create, consisting of the influences we allow into our lives. These influences include the people we interact with, the materials we read, the things we watch on TV and so on. We can allow positive influences into our bubble, negative influences, or a mixture of the two.

The influences that you allow into your environment have access to something very precious - your mind! What you invite into your mind affects what you think about and how you feel. This, in turn, shapes your attitude, your beliefs and your behaviors ... and ultimately your results.

Now and again, it's a good idea to re-evaluate what you've allowed into your bubble. Here are some suggestions for making your bubble more positive so you can lead a happier, more productive life:

* Limit your exposure to the television news. We're now being bombarded with negativity on the so-called news reports. I call it "Media Madness." Terror attacks, crimes, and other tragedies dominate. You rarely hear any uplifting stories. Instead, the news anchors focus on violence and destruction, and you often get graphic pictures to cement the horror even further in your brain.

But why stop there? Most news reports now have a "runner" that goes along the bottom of the screen so you can get additional negative news in print while you're hearing about the other catastrophes. If you continue to view these programs for hours on end, you're allowing an avalanche of gloom into your mind.

You can keep up with current events by watching the news for about 10 minutes. Don't let this poisonous material into your bubble for too long or the negativity will take its toll on your success and well-being.

* Maintain relationships that are uplifting. I'm referring here to your discretionary relationships, where you have a choice whether to spend time with the other person. This includes your friends and also people you spend time with at work.

For instance, you might have a habit of hanging around with negative people at lunch, listening to them complain about this or that, or even engaging in "water cooler gossip" yourself. This is your choice, and you could choose to be with more positive people or to simply eat lunch alone.

When you invite negative people into your bubble, they will constantly pour their negative comments into your mind. This helps to kill your attitude and your dreams.

Think about it - how do you feel when you're around these prophets of doom? You're drained because these people take energy from you. Positive, supportive people, on the other hand, provide an infusion of energy and help to boost your attitude. Consider the people in your bubble and whether you need to make some adjustments.

* Program your mind with positive materials. If I were to say that your attitude and your beliefs are dictating the course of your life, many of you would nod your head in agreement. But let me ask you this: How much time did you spend today monitoring your attitude? How much time did you spend today concentrating on your beliefs? How much time did you spend today considering your enormous potential? Chances are you didn't spend any time thinking about these vital subjects.

Whether or not you care to admit it, you're programming your mind every day. It's just a matter of whether you choose positive programming or negative programming. Positive programming improves your attitude and encourages you to take constructive action.

Negative inputs weaken your attitude and discourage you from moving forward. To improve the quality of your bubble, make sure to get positive messages into your mind every day. Spend 15-30 minutes each morning reading something positive, whether from a book, a magazine or online. Spend 15-30 minutes listening to positive audio programs every day.

In the very first week, you're going to see results in the way you think and act. Your bubble is going to be a lot more positive and supportive than ever before.

* Set the mood with music. What's your favorite song? Maybe you have a few songs that bring up positive memories, make you smile or give you a burst of energy. If I played your favorite songs for you right now, you'd instantly feel better.

As I see it, people don't use music often enough to create a positive mood. Whether in your car, at home, or while exercising, play music that will help you create the mood you want. If you want energy, play music that invigorates you (the theme from the movie, "Rocky," might be one example).

If you want to relax after a stressful day, play music that calms you or helps you think about peaceful, serene experiences in your life. As someone who enjoys aerobics classes, I know first-hand about the power of music. When the music is un-inspiring, I feel like my legs weigh a ton and it's a struggle to stay interested. When the music is more upbeat and to my liking, I feel like a different person - full of energy and enjoying every second of the class!

Music has a profound effect on your mood. Make sure that your bubble is filled with music that works for you.

Just as the teenage "boy in the bubble" took control of his environment, you too have this ability. Make the commitment to carefully examine every influence that you invite into your environment. Your success and your happiness depend on the choices you make.

-- Jeff Keller
(c) Attitude is Everything, Inc.

Jeff Keller is the President of Attitude is Everything, Inc. For more than 17 years, Jeff has delivered presentations on attitude and motivation to businesses, groups and trade associations throughout the United States and abroad. Jeff is also the author of the highly acclaimed book, Attitude is Everything. For more information, go to http://www.attitudeiseverything.com

* "Medicaid: A Time to Act"

The Opportunity For All Campaign

What: Call Your Senators: Tell Them, Don't Cut the Basics!

When: Tuesday, March 8

Call Your Senators at 1-800-247-2971 on March 8th during the business day.

Tell them to protect children, older people, and families by opposing cuts in nutrition, health care, education, and other vital services.

Tell them to oppose any budget that cuts basic services now or sets rigid caps that cut more and more each year.

Use this toll-free number, 1-800-247-2971, to be connected to your Senators or directly call the U.S. Capitol Switchboard at (202) 224-3121.  The toll-free number is provided courtesy of the American Friends Service Committee which has launched a new budget campaign, www.saveourservices.org. Don't be discouraged if the lines are busy -- we want calls to pour into the Senate offices!  You can also find your Senators' direct lines at www.senate.gov.  

House and Senate Budget Committees will be working on the budget the week of March 7 -- Your calls are urgently needed!

Spread the word to your networks today!

For more information, contact Steve Wamhoff at the Coalition on Human Needs, (202) 223-2532; swamhoff@chn.org Find lots of facts about threatened cuts at www.chn.org
 

Information Bulletin 83, 3/05

A few weeks ago, we tried to raise the issue of what would happen to persons with disabilities who receive Social Security Disability Insurance (SSDI) benefits with the proposed Social Security changes being floated
around.. See "Social Security Debate and PWD" Information Bulletin #77 at www.stevegoldada.com, on 1/20/05.
   
We reminded folks that there are three different beneficiary groups that make up the Social Security Insurance program - persons who are retired, persons who are survivors of workers who deceased, and persons who are
disabled.  We asked how changing the retirement insurance program would affect the disability insurance program.

Nationally, there are 7.6 million persons who receive Social Security Disability Insurance benefits (this includes spouses and children of disabled workers); they are 16% of the entire Social Security program.

We recently found the Economic Policy Institute's web site (www.epinet.org/social security) that broke down the 7.6 million by States.  It is important for disability advocates to be aware of how many people in your State who will be affected by the various proposed Congressional changes.

What will happen to these 7.6 million persons with disabilities?  Where is the "Beneficiary Impact Statement" analyzing how the proposed changes will impact on these 7.6 million persons?

Here is a breakdown by State. The first number is the total number of people in your State who receive Social Security Disability Insurance (SSDI) benefits.  The second number is the percentage of Social Security
beneficiaries who receive Disability Insurance benefits.

Nationwide: 7.6 million receive SSDI and they comprise 16% of ALL Social Security beneficiaries.

Alabama has 196,077 people who receive SSDI; they are 23% of ALL Social Security beneficiaries in the state;

Alaska has 11,529 people who receive SSDI;  they are 19% of ALL Social Security beneficiaries in the state;
Arizona - 136,623; 16%;
Arkansas -   119,173; 22%;  
California  - 637,612; 15%;
Colorado - 88,834; 15%;  
Connecticut - 77,700;13%;  
Delaware - 22,832; 16%; 
D.C. - 10,492;15%;   
Florida - 459,679; 14%;
Georgia - 232,384;20%; 
Hawaii - 21,536; 11%;
Idaho -33,303; 16%;
Illinois - 260,919; 14%;
Indiana -165,512; 16%; 
Iowa  - 68,755; 13%;
Kansas - 61,031; 14%;
Kentucky -191,194; 25%; 
Louisiana - 143,414; 20%;
Maine - 54,806;21%; 
Maryland -101,754; 14%; 
Massachusetts -180,296; 17%; 
Michigan -281,690;17%;
Minnesota -101,681; 13%;
Mississippi - 131,789; 25%; 
Missouri - 185,308;18%; 
Montana - 24,208; 15%;
Nebraska 38,358;13%; 
Nevada -50,488;15%;
New Hampshire -37,390;18%; 
New Jersey - 180,976;13%;
New Mexico -50,054; 17%;
New York - 483,959; 16%; 
North Carolina - 285,915;20%;
North Dakota -12,652; 11%; 
Ohio - 278,951;14%;
Oklahoma - 99,753;16%; 
Oregon -83,439;14%;
Pennsylvania - 336,062; 14%; 
Rhode Island -33,864;18%; 
South Carolina - 151,828;21%; 
South Dakota -17,020;12%;
Tennessee - 210,619;20%; 
Texas - 425,510; 15%;
Utah -34,359; 13%; 
Vermont -18,419;17%; 
Virginia -191,526;18%;
Washington -134,988;15%; 
West Virginia -94,928; 23%;
Wisconsin -152,182;13%: 
Wyoming -10,923;14%.                         
At the least, disability advocates should ask their Senators and Congressional representatives how any proposed change will affect those people in your State who receive SSDI.

Steve Gold, The Disability Odyssey continues

Back issues of other Information Bulletins are available online at  http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects. 

To contact Steve Gold directly, write to stevegoldada@cs.com    
 

* COLLECTIVE ADVOCACY WORKSHOPS

FOR PERSONS WITH DISABILITIES, THEIR FAMILY MEMBERS,
AND MEMBERS OF DISABILITY ORGANIZATIONS

Location:
UCP Community Service Center
4638 Center Avenue, Pittsburgh
412-683-7100

Workshop  #1 Planning for Success 

Date-April 11, 2005

Time-10 am – noon

Understand why effective planning is necessary! Learn how to put a plan together and think through all of the right steps, including mission statement, goals/objectives and action plans.

Workshop #2 Deciding Which Advocacy Actions to Take

Date-April 11, 2005

Time-1 pm – 3 pm

Understand what you should have decided before you determine which advocacy approaches to use. Learn what the difference is between direct and indirect advocacy approaches. Discuss the advantages and disadvantages regarding all types of advocacy approaches.

ENROLL NOW TO ATTEND WORKSHOPS 1 and 2 !!!

*How To Enroll – Call George Taylor toll free at 1-800-684-3695 OR email taylor.taylor@verizon.net  (Deadline for registration is Monday, April 4, 2005)

No charge for Workshops or materials ($6.00 fee to defray lunch costs). Special Assistance, such as interpreters and attendants, is available upon request. Workshop material is available in alternate format such as large print, disk or Braille if requested.

**Please post and circulate this flyer in your office, as well as send it to as many individuals and families as possible. Also, please include the flyer in any newsletters that you may publish. Our workshops are dependent on your generous and effective outreach. Thank you!

All Workshops are funded by The Pennsylvania Developmental Disabilities Council.

* Upcoming Peer-Support Meetings and Social Events

 

Please visit http://www.pabia.org for a complete listing of Pittsburgh Area Peer Support group meetings. Please mark your 2005 calendar for each month in advance as an ongoing reminder.

 

We do not have any control over the people who are responsible for directing these meetings. Therefore, if you are interested in attending any of the meetings, please contact the person listed for that meeting to confirm the date, meeting place and time.

For more complete information please visit the directory of meetings at http://www.pabia.org/Support%20Groups/Support%20Groups.htm

 

For a list of State Brain Injury Associations and the groups in those states, please visit:  http://www.biausa.org/Pages/state_contacts.html

 

Brainstormers International Email Support Group

 

We have two email support groups you can join. One is through Denise Patterson. Contact Denise at deenomad@aol.com to be added.

 

The other is through Yahoo Groups. You can join at http://health.groups.yahoo.com/group/Brainstormers101/

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It recently occurred to me that Love is action that improves another person's life. Not just words, but action. Doing something, anything, that positively impacts other people's lives and leaves them even just a little bit better off physically, emotionally, psychologically or spiritually, that's love. -John Pistorius

Do something to leave someone a little better off today.