This editor is located in Pittsburgh, and assists local support groups. The following area meeting reminders are provided for local subscribers' convenience. 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 Pittsburgh Support Group meetings, please visit the directory of meetings on the www.pabia.org website and 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

Pittsburgh- first Tuesday -February 1, 2005

Monroeville-second Thursday -February 10, 2005

Indiana Twp.-second Tuesday -February 8, 2005

Indiana County-third Thursday -February 17, 2005

Bowling Event- fourth Monday -February 28, 2005

Brainstormers Email Support Group-24 hours a day, 7 days a week!

To locate a directory of Brain Injury Support Organizations affiliated with the BIA-USA, please visit their state affiliate directory at http://www.biausa.org/Pages/state_contacts.html

or CALL: 1-800-444-6443.

Supreme Court Hearing Case Number 03-1388

Spector et. al. vs. Norwegian Cruise Line

On February 28th, 2005, the United States Supreme Court in Washington DC will hear Case No. 03-1388. (Spector, et. al. vs. Norwegian Cruise Line) This discrimination case was filed (2000) in behalf of the five Plaintiffs, entered the United States Court system in 2001, and worked its way to the highest court in the United States of America. We need to have a show of support for People with Disabilities on the day of the hearing. 

This case is an important one because it will impact transportation issues and it will set a precedent in regard to accessibility on Cruise Ships.

(PWD =Persons With Disabilities, W/C =Wheelchair)

Consider the following points :

Write to Julia Hollenbeck at wheelme@wheelmeon.org and join the cause by inserting "Cruises" in the subject line of your E-mail. Even your words of encouragement will be appreciated and helpful.

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PA SILC BOARD MEETING Adventure

January 19, 20 2005

by John Pistorius

The Pennsylvania Statewide Independent Living Council held its quarterly Board of Directors meeting January 19th and 20th. The meeting was held in Harrisburg, which is about 206 miles from where I live. Usually the trip by motor vehicle takes about four hours. This time it took 13.

I'm not complaining here folks, I'm explaining. We left Pittsburgh at 4 am. About half way to Harrisburg, we experienced vehicle failure. At the time of this writing, we are unsure exactly what the nature of the problem is. As we were driving along the PA Turnpike, a toll road, the vehicle suddenly lurched forward as if I had pushed the fuel pedal to the floor. And then, just as quickly, the engine became disengaged from the transmission. That is to say, the power from the engine was no longer being transmitted through the transmission to the rear wheels.

Fortunately, this occurred just as we were approaching a Rest Area and we were on a downgrade. We easily coasted into the rest area where I checked for fluid in the transmission. After finding the fluid level to be OK, I checked the underside of the vehicle to make sure we still had our drive shaft and to check the shifting linkage. Both were intact and operational.

I called our Roadside Assistance (Triple-A) and they dispatched a Flat Bed, Roll-Off type vehicle to haul our Suburban back to Pittsburgh. Unfortunately, due to the fact that it was only 6 am, the driver was the only one in his shop. So he took us there to wait for the change in shift when the daylight crew would arrive. We waited in a  sparsely accommodating 'customer waiting' area until 9 am. The benches were hard and the room was cold and uncomfortable. Again, not complaining-explaining. Bear with me.

The reason that I wanted to attend the meeting was to share my thoughts about some important issues, including cognitive accessibility. The PA SILC was established in 1992, under the Federal Rehabilitation Act Amendments. Though it is a Governor appointed council of Pennsylvanians, the SILC itself is an independent non-profit organization. The SILC's role is to advise the Governor and his administration on the development and implementation of public policies impacting people with disabilities. The focus must be on policies which empower Pennsylvanians with disabilities and their supporters. This role is fulfilled via the State Plan for Independent Living, created by people with disabilities through a series of public hearings. I and others from Western Pennsylvania attended hearings and offered our suggestions for developing the State Plan. My attendance at the Board meeting was to be a follow-up to my participation in the public forums.

On the Road Again

The meeting was scheduled to begin at 9 am and instead of attending, here we sat in a garage in Bedford, PA waiting to be hauled back to Pittsburgh. If my wife had not been with me, I'd have been anxious. But she was there and talking helped keep me calm. I thought that we could get back to Pittsburgh, switch vehicles and start over. Even though we would miss the first day, we could make it for the second. At first I even believed we might make it back early enough to attend part of the afternoon session on the first day. But that was before the snow started falling.

As we began traveling toward Pittsburgh, in this large flat-bed truck, I realized that the roughness of the ride was going to be hard on my body. I wasn't sure that I would want to drive back to Harrisburg after reaching Pittsburgh. As we traveled, the snow began to fall. The closer we got to Pittsburgh, the roads became worse. It took us three hours to make the two hour drive. By the time we unloaded our vehicle from the hauler, I was in serious pain.

And on the Road Again

We arrived home by noon and I had doubts about the road conditions and traffic. Almost to the point of staying home. But instead, we grabbed a quick bite to eat, an aspirin and moved our belongings from the Suburban to my truck. And off we went.

To our pleasant surprise, the snow had been cleared and the roads, while wet, were not slippery at all. Unfortunately, the washer system stopped working. I had to get behind other vehicles to get splashed to clear the windshield frequently. At some points, the road was dry and I had to stop to clean the salty film from the windshield. This gave us a chance to stretch our legs.

This was undoubtedly one of the most difficult journeys I've ever made by motor vehicle. And the unpleasantness of this trip fueled my resolve to address the PA SILC Board of Directors.

Finally-Arrival

We made it to Harrisburg by 5 pm. Too late to attend even a part of the meeting for that day. We checked into the Hotel, freshened up and met with some friends to talk. We learned from them what had occurred during the meeting that day. Their description of the meeting left me feeling pleased that I would be able to address the board the next day.

The next morning, I was terribly fatigued by the trip.  I expected to rest well, but I was unable because the room heater did not work. I felt as if I was catching a cold. The discomfort added to my questioning my logic in attending this meeting. But this discomfort did nothing to stop me from attending the meeting. Instead, I was more determined to address the board.

I wanted to be completely prepared. As I reviewed my notes, I decided to open the Bible. You know, the Gideon's Bible that most hotel rooms have. I unintentionally turned directly to the third chapter of the book of Proverbs and read the following passage:

Trust in the LORD with all your heart; and lean not unto your own understanding.

Seemed like a message to me. What do you think? I stopped studying my notes and ate breakfast instead. And then we went to the meeting.

What I witnessed at this meeting was nothing short of chaos. One man was called out of order at least twice as everyone looked on in disbelief. The chairman of the board was not able to maintain order. Another board member shouted "NO!" to the chairman when he asked her to put her hand down because she was out of order. They got off of the agenda and wasted half the morning debating trivial issues, even as other board members attempted to get the process on track. To his credit, I believe the chairman wants to improve the meetings. I base this on his comments made to me after I spoke to the board. Time will tell.

Time for Public Comment.
I made the journey to this meeting with a specific purpose in mind. The 13 hour trip, the extreme amount of physical pain I was experiencing, the cold room, my sick feeling and the chaotic meeting was as painful as a pair of new shoes can be. This is an unending pain that stays in the forefront of your mind. And on top of my personal discomfort, facing discrimination because of my disability was enough to convince me to point out the inequity.

Instead of speaking as I had prepared, I first commended them for having a Parliamentarian. This is a person who is trained in the proper functioning of a board of directors. (It was clear to me that they needed this person to maintain some semblance of order.) Then I expressed my deep concern for the way in which they permitted the meeting to go off track and get out of control. I told them that if I were on that board, and I've been on a few, I would demand that anyone called out of order more than twice be removed from the room! Now that was some kind of boldness, because I had no authority there. I was almost shocked that the words left my mouth.

I explained how inaccessible the meeting was from a cognitive standpoint. If a person who is experiencing cognitive impairment attends a meeting, disorder and disharmony can be enough to exclude them from the process. If the meeting planner has an agenda, it is critically important for the agenda to be followed. Otherwise, jumping off topic and away from the written agenda can cause people to lose track of what is being talked about. If a person with cognitive disability loses concentration or memory for even a moment, being off topic or outside of the confines of the agenda completely excludes them from the process. And this is not Ok.

Cognitive accessibility is not something many people understand. It was clear to me that some of these people did not have a clue. What is not alright is that they have been told before. Now they must address it.

I cautioned them regarding the civil rights violations of people with cognitive disabilities being violated. And I reminded them of their mission-To advise the Governor and his administration on the development and implementation of public policies impacting people with disabilities. They cannot accomplish anything meaningful when meetings are permitted to go off track like the one that I attended did.

What's the Point?

The point is to affect changes in society to improve lives of people with disabilities, including the elderly and to combat civil rights violations. I reminded the PA SILC board members that the only truly valuable thing they have on earth is their time. Wasting it the way that I witnessed was terrible, especially in light of their mandate. They have an important job to do and they are not doing it as well as it can possibly be done.

I told them that to include people, they need to get a notice of their meetings out in plenty of time for people to make whatever arrangements are needed to attend. Not giving timely notice of meetings is exclusionary. And I pointed out how they are excluding people by the way they conduct themselves and their meetings. (I believe this will change.)

I believe the leadership of the PA SILC understands the importance of including all persons with disabilities in their organization, forums and meetings. They must accommodate all persons with disabilities, including cognitive disabilities. The Chairman of the board came to me after my brief presentation and promised to meet with me and Andrea Williams to help him better understand cognitive accessibility and how they can improve the meetings, their operations and their process.

Some of these board members fought alongside of many others for the Americans with Disabilities Act. They know the law. They know what needs to be done. But others haven't a clue about the ADA or civil rights or violations for that matter. And still others don't care. But that is about to change. At least among the SILC board members. Some people will be leaving the board soon. This will open the board to include more people who will improve their operations and fulfill their purpose.

My comments were well received by most of the members in attendance. Some came to me almost as soon as I was finished, thanking me, congratulating me and asking me for my business card. Some exchanged information with me to insure networking. One member told me that I said exactly what the board needed to hear. Others told me that I said what they had been saying repeatedly. My wife told me that she could see many of the members smiling and nodding their heads as I spoke. It was clear that the message I presented had a powerful effect upon the members of the PA SILC there in that room. It proved to me that they understand that cognitive accessibility is an important concern which must be addressed.

The man that had been repeatedly called out of order quickly left after I finished speaking.

Was It Worthwhile?

Some say that they refuse to waste their time attending meetings and speaking up because we can't make anything change. But that's a selfish lie. No one can convince me that speaking up and speaking out about the issues doesn't help. This is because I know conclusively that it does. I've done it for years and have had a positive effect upon the issues I've addressed. And that's why I encourage others to get involved.

It's time people.

It's time. The only thing we have of any value in this life is the time that is granted to us. The way we spend it is extremely important. Our collective voice can and does make a difference. Together Everyone Achieves More-TEAM. (Thanks to Hillary Hasson for that acronym.) Plan to get involved. Even if getting involved is uncomfortable, it's worth it!

jp

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The New Freedom Initiative

The New Freedom Initiative is a comprehensive plan that represents an important step in working to ensure that all Americans have the opportunity to learn and develop skills, engage in productive work, make choices about their daily lives and participate fully in community life. The Initiative's goals are to:

• Increase access to assistive and universally designed technologies;

• Expand educational opportunities;

• Promote homeownership;

• Integrate Americans with disabilities into the workforce;

• Expand transportation options; and

• Promote full access to community life.

The initiative's specific proposals that directly involve the US Dept. of Health and Human Services (HHS) include: promoting full access to community life through swift implementation of the Olmstead Supreme Court decision; integrating Americans with disabilities into the workforce through swift implementation of the Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA); and the creation of the New Freedom Commission on Mental Health.

Source: http://www.hhs.gov/newfreedom/init.html

For more information please visit the following:
http://www.whitehouse.gov/news/freedominitiative/freedominitiative.html

http://www.cms.hhs.gov/twwiia/default.asp?

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Free Support Group Development Tools

Free Help for anyone Starting or Running Peer Groups

The Ten Insider Tips manual is ready for release. Anyone interested in receiving a copy of the manual and tools can visit www.pabia.org and click on the Support Group Tools link. Write to John Pistorius at jp@pabia.org or call (412) 481-0443 to receive a free CD with the support group tools created so far. This CD is free, however, while not necessary, free-will gifts are accepted and appreciated.

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Book Review-Under Cottonwoods

Stephen Grace

I'm not a survivor, but a relative of mine is. When I was a teenager she sustained a traumatic brain injury in a car accident. In college, a friend of mine died of massive head trauma from a fall while rock climbing. He was in a coma before he died; I've spent a lot of time over the years wondering what his life would have been like if he'd come out of the coma. After college, for six years, I worked with survivors of traumatic brain injury. Many of them had their injuries at a young age, leading to developmental disabilities. My favorite part of the job was finding ways for the people I worked with to participate in outdoor activities. We went skiing and rafting, camping and fishing. My novel, Under Cottonwoods, was inspired by those experiences.

I hope my book helps raise awareness about survivors. I wrote it for the average reader of fiction with little or no background in the fields of traumatic brain injury and developmental disability. I would like readers to come away from the story thinking that someone like Walter--who survives a traumatic brain injury as a boy, leading to a developmental disability--is worth getting to know.

Please feel free to contact me if you have any question or comments about Under Cottonwoods.

Stephen Grace
2458 N. 9th St. #22
Laramie, WY 82072
(307) 742-9198
stevegrace1@juno.com

 

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Thank You!

These are the people that make it possible.

Ed Crinnion (412) 761-9870 for your continuing efforts in keeping the Pittsburgh Area Brain Injury Alliance together, funding the organization's website and supplying refreshments for PABIA meetings.

Becky Myers (724) 349-5934 for your continuing commitment to peer support in Indiana County.

Denise Patterson and Paul Damon (412) 372-2888 for your ongoing coordination of the Monroeville Area Peer Support Group.

Ann Ciotoli, MaryAnn Stritmatter 412-828-1300 and Tom Byrnes (412) 531-0343 for your  commitment to peer support in Indiana Twp.

B-NEWS Contributors- your insight, articles, poems and comments are vital to the success of this publication.

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Till next time, Seek to be and remain Barrier-Free. You have the power.

Thank you for subscribing and reading this newsletter. It is yours. This newsletter may contain articles, news releases and other items of interest supplied by or received from third parties.

Required Disclaimer: Nothing contained herein is intended to be substituted for medical, legal, accounting or other professional advice. The information provided herein should not be taken as a health-care diagnosis, treatment, course of therapy or as any other approved or prescribed health-care advice or instruction. The information is provided with the understanding that the publisher is not engaged in the practice of medicine or any other health-care, legal, accounting or other profession and does not enter into a health-care, legal, accounting or other professional practitioner/patient/client relationship with its readers. The publisher does not advise or recommend to its readers treatment or action with regard to matters relating to their health, legal, accounting or other professional needs or well-being other than to suggest that readers consult appropriate professionals in such matters. The publisher does not recommend or suggest that action should be taken based solely on the content of this publication. The limited information and opinions provided herein are believed to be accurate and sound at the time of publication, based on the best judgment available to the authors. However, readers who rely on information in this publication to replace the advice of health-care, legal, accounting or other professionals, or who fail to consult with health-care, legal, accounting or other professionals, assume all risks of such conduct. The publisher is not responsible for errors or omissions.

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