THE BRAILLE FORUM is available in braille, large print, half-
speed four-track cassette tape, computer disk and via e-mail.
Subscription requests, address changes, and items intended for
publication should be sent to:
Penny Reeder,
THE BRAILLE FORUM,
1155 15th St. NW,
Suite 1004,
Washington, DC 20005,
or via e-mail.
E-mail the Editor of the Braille Forum
Submission deadlines are the first of the month.
The American Council of the Blind is a membership organization made up of more than 70 state and special-interest affiliates. To join, visit the ACB web site and fill out the application form, or contact the national office at the number listed above.
Those much-needed contributions, which are tax-deductible, can be sent to Ardis Bazyn at the above mailing address. If you wish to remember a relative or friend by sharing in the council's continuing work, the national office makes printed cards available to acknowledge contributions made by loved ones in memory of deceased friends or relatives.
Anyone wishing to remember the American Council of the Blind in his/her Last Will and Testament may do so by including a special paragraph for that purpose. If your wishes are complex, contact the ACB National Office.
To make a contribution to ACB via the Combined Federal Campaign, use this number: 2802.
For the latest in legislative and governmental news, call the "Washington Connection" toll-free at (800) 424-8666, 5 p.m. to midnight Eastern time, or visit the Washington Connection online.
Houston in July. "It's gonna be hot!," we heard from more than one person as we made preparations for the 41st annual national convention of the ACB.
And it was hot in Texas, but not nearly as hot as it was in Washington, D.C., where temperatures were so high and air quality so poor that, for the first time in any of our collective memories, there was a Code Purple in effect during the days we were basking in the comparatively comfortable temperatures and the exuberant camaraderie of the convention in Houston.
The Adam's Mark Hotel was perfect, with air conditioning turned down -- but not to the meat-locker temperatures one sometimes finds in the country's warmer climes -- and absolutely flawless service!
There were "Howdy's" a-plenty, and more than a few big Texas hats. There were marble slabs slathered with delicious ice cream, chicken-fried steak, Shiner Bock beer, and a real Texas barbecue! (Who knew that among her many talents, Margarine Beaman can count cattle -- and people -- roping!)
The Exhibit Hall was bustling, with high tech and low tech items designed to make our lives easier. There was even a talking Bank of America ATM to help out those folks who didn't bring along quite enough cash.
There were city bus-tours of Houston, an extended trip to the gulf-shore of Galveston, and tours of the Houston Space Center for all the space-junkies among us.
And what of the convention program? There were demonstrations of a Sound Alert system which allows people to escape from emergency situations twice as fast as conventional fire and smoke alarms. There was a doc who offered advice for the many blind people who find that they just can't sleep. There were briefings from the ACB IDEA Task Force, and updates on our progress toward accessible voting. Chris Gray was in fine form as he presided over his first convention assemblage, and Charlie Crawford updated the convention on all the comings and goings on at the national office in D.C.
There were elections! Three new members, Billie Jean Keith, Carla Ruschival and Patrick Sheehan, were elected to the ACB board of directors, and Alan Beatty and Brian Charlson were unanimously returned to the board to continue their much- appreciated service. Ken Stewart was elected as a new representative on the board of publications, and Winifred Downing and Mike Duke were returned to the BOP to continue their distinguished service there. Charlie Hodge was appointed chair of the board of publications.
There was an award for excellence in writing for Barry Levine; for effective presentation of blindness issues via the media for Matt Lane of WGBH for writing an episode of Arthur; for Jim Fruchterman who has converted "Napster" into a legal way of sharing books in audio and braille formats; and for Fox television for initiating and promoting video description on its most popular prime-time shows even before the FCC mandate went into effect. Paul Sauerland was honored for many years of service to people who are blind, and Jenine Stanley was honored for her excellent Canine Connections show on ACB Radio which featured guide dogs and rescue dogs in the aftermath of September 11.
There were resolutions and constitutional amendments offered for debate and consideration. People shared meals, drinks, hugs, and laughter. There were even massages -- for people as well as dogs!
The convention press room seemed even busier than usual as staff and volunteers kept members informed with the home- delivered daily "Lone Star Ledger" and a dial-in telephone information service dubbed "The Convention Ear."
If you missed the 41st annual convention of the ACB, this issue of "The Braille Forum" will acquaint you with some of the highlights. If you were there, you may find yourself, or your friends, among the people featured in Ken Nichols' excellent photographs. If we whet your appetite for presentations that you may have missed, you can visit each day of the convention, still archived by ACB Radio on our web site (http://www.acb.org). Or you can purchase a complete (24-tape) set of the convention tapes, which were so excellently prepared once again by Jay Doudna and Mike Duke. Listening to Jonathan Mosen's excellent convention coverage is free for the surfing, and the convention tapes can be purchased for only $35.
Finally, if you find yourself feeling nostalgic for the exuberant ambiance of an ACB convention, make plans today to attend the 42nd annual convention of the American Council of the Blind, from July 5 through the 12th, in Pittsburgh, Pa. It's going to be great!
The theme of the 2002 ACB convention was "People First," and the entire week was a celebration of people and their accomplishments, contributions, and hopes for today and tomorrow. Everyone who attended the convention came away with his or her own special perception about who were the most interesting presenters during our week together in Houston, Tex.
Certainly, many remember two women who were featured speakers during the week. One was Utah Council of the Blind's President Linda Braithwaite who held the audience spellbound as she told us about her 20 years in the Mormon Tabernacle Choir. Jia Yang was ACB's featured international visitor from the People's Republic of China. In her formal presentation, she described conditions for the blind of China, and later, at an evening dinner, she gave us a glimpse into her world in a relaxed and very personable manner.
Two more women were working tirelessly -- and seemingly non- stop -- behind the scenes to make sure the convention ran smoothly. Cynthia Towers carried through her first year as the ACB convention coordinator. Carla Ruschival, an old hand at conventions, provided support for Cynthia and that extra special pair of hands to lend the assistance ACB needs during convention weeks.
In all these examples and in so many other ways, the "People First" ideal was celebrated and actuated as the week progressed. By focusing on this theme, ACB celebrated its 41st birthday in a caring and vital way. We came together to share our past accomplishments and to walk toward a new year grounded in the knowledge of how much every person, whether known or unknown to many in our organization, contributes to making us all successful. We create our success through a combination of diversity and community; through a constant exchange of varying viewpoints that meld together with particular strength during the convention week; with a mutual respect and caring for one another that can and does transcend momentary strife. Each year, our convention serves as a productive loom for weaving together the "whole cloth" that is ACB. It is a time for reuniting friends and fellow travelers and for reinvigorating our spirits to carry on the work of all our affiliated organizations. When and from where else can we depart exhausted and renewed at the same time? We did so this year by putting "people first:" not ourselves, but some particular people chosen for what they do and as an embodiment and example of what we all hope we can also do in the months and years to come.
The Sunday session opened with a welcome by ACB President Chris Gray. Following the invocation, presentation of the Texas and American flags by a number of local Boy Scouts, and the singing of the national anthem and the ACB Song, ACB of Texas President Chris Prentice officially welcomed everybody to Houston.
After Chris Gray's president's address, Linda Braithwaite had the audience hanging on her every word with descriptions of her time performing with the Mormon Tabernacle Choir.
Immediately following Braithwaite came the awards presentations. And the winners were:
Distinguished Service Awards: David A. Kuemmel, Fox Broadcasting Network (accepted by Carolyn White), and Guide Dog Users, Inc. for the September 11 edition of "Canine Connections" (accepted by Jenine Stanley)
Vernon Henley Media Award: "Prunella's Special Edition" executive producer Carol Greenwald and writer Mathayu Lane
Ned E. Freeman Award: Barry Levine
Robert S. Bray Award: Jim Fruchterman, Bookshare.org
Durward K. McDaniel Ambassador Award: Paul Sauerland (accepted by Mike Godino)
Affiliate Growth Award: ACB of New Mexico
After the awards came life membership presentations (see "ACB Honors New Class of Life Members" elsewhere in this issue).
The session finished up with the credentials committee report and the roll call.
For most blind folks, the roll call of affiliates at the opening session of the national convention was always a highlight. Each affiliate announced its presence along with its official delegate, alternate delegate and representative to the nominating committee. This information was also repeated back by the national secretary. In this way, an attendee could get a pretty good idea of who was in attendance as well as whether certain individuals still held leadership positions of trust within their respective affiliates. This year, the roll call was done at the very end of a long opening night's agenda, and our newly elected national secretary, Donna Seliger, was calling the roll call for her very first time. With a number of affiliates being unexpectedly absent, thus holding up the progress of the roll call, and with the new national secretary being very thorough, cautious and precise in order to get things right, the roll call did drag on interminably. ... If the roll call were done as the first order of business rather than the final order of business at the opening session, I believe that it could be accomplished much quicker and could still be an informative and interesting highlight of the opening session of the ACB national convention.
Captions
Chris Gray gives the welcoming speech, standing behind a microphone on stage.
Jenine Stanley of Guide Dog Users, Inc. accepts the Distinguished Service Award from Penny Reeder.
Jim Fruchterman thanks the awards committee for choosing Bookshare.org for the Robert S. Bray Award.
A highlight of the day was hearing from Jia Yang, vice president of the China Association of the Blind in Beijing. She described services for the blind in China, jobs that blind people hold, and contrasted that with the United States.
The convention also heard from Frank Kurt Cylke and Michael Moodie of the National Library Service for the Blind and Physically Handicapped.
Each year, a different affiliate gets a chance to shine in the spotlight. This year's affiliate was the Council of Citizens with Low Vision International, featuring a presentation by Pat Beattie.
The convention also heard from Steven Lockley of Harvard University, who spoke on the impact of blindness on sleep disturbance (see excerpts, this issue).
Caption
Pat Beattie describes herself as not really blind, not really sighted.
The convention began with the nominating committee report by Oral Miller, an introduction of Fundflow by Dodge Fielding, and presentation of constitution and bylaws amendments by Ray Campbell, chair of the committee.
Dr. Philip Hatlen, superintendent of the Texas School for the Blind and Visually Impaired, outlined his vision of a system in which separate schools for the blind and local education authorities share with parents the best methods and placements for educating their blind and visually impaired children. (For more details, see "Change Is Hard: You Go First," September 2002.)
Melanie Brunson presented an update on a collaborative effort among blindness organizations and textbook publishers to improve timely access to textbooks and instructional materials.
A majority of Tuesday was taken up by the scholarship presentations (see "And This Year's Scholarship Winners Are ..." in this issue). But the convention did get to hear from Joanne Wilson, commissioner of the Rehabilitation Services Administration, on her perception of the state of vocational rehabilitation today.
"Empowerment is taking choice to the next level," Wilson said.
"This morning you have given us some new principles to think about, and at least included within those principles is the idea of equality," ACB President Gray told Wilson. "I would like to suggest to you that the stand that the Rehabilitation Services Administration has taken in the last couple of years with regard to those blind people who choose to work in non-integrated settings is not a stand that fosters equality in any way. I would like to ask you to go back to RSA and give some serious thought to the idea of the continuum of what people can do. It's OK to raise the bar, but the bar has to have legs that go all the way back to the ground. If we're not careful, the integrated and non-integrated setting idea will do nothing more than create a caste system among blind people. We don't want that. I don't think you want that either."
Wilson responded by reminding her listeners that people could still choose to work in sheltered workshops. "Look around the room here for a minute," she said. "If you were really given the opportunity to know that there was something else out there for you, and given the training and the tools in order to obtain a different kind of goal, I wonder how many people would choose sheltered employment if they're given some viable options and the ability to get to those options. We're trying to stretch -- so that providers will start moving ahead and creating other kinds of options for people who are blind."
Sandra Cammaroto from the Transportation Security Administration discussed passenger screenings and air travel safety and responsibilities. "Now I know most of you probably got here by plane and had to go through security checkpoints," she said. "... I bet everybody in this room can tell me they've had at least one bad experience at security checkpoints in the past. We're trying to prevent that in the future."
Captions
Melanie Brunson presents a report on progress in obtaining accessible textbooks.
Joanne Wilson shares her views on the state of rehabilitation today.
Wednesday dealt with access: access to the built environment, to telecommunications equipment, televisions and much more.
Dr. Beezy Bentzen discussed audible pedestrian signals, and the benefits and pitfalls of speech versus other kinds of sounds from pedestrian signals. "Five companies manufacture audible pedestrian signals with speech: Polara, Novax, Prisma, Panich, and Dick Campbell." There are two different kinds of speech messages you can get from a signal, she said; one is the message that tells you when the walk sign is on, and the other is the kind that gives you more information about the intersection when you press the push button. (For more details on audible pedestrian signalization, see "What Should the APS Messages Say?" in the April 2002 issue.)
Deborah Withington of Leeds University in the United Kingdom discussed sound alert locator systems, and how to get out of a building safely. Her first example drew the audience right in: "The worst case situation is the fire alarm sounds, you respond eventually, you get up off your seat and the real question is, 'where are the exits?' In the worst case, when there's a real fire and the place fills up with smoke, all the exit signs in the world won't help anybody get out of the building. ... What I will describe to you today is something that will help everybody, whether they're blind, partially sighted, or sighted and in a fire. The idea is we need to get out of the building, the airplane, the ship, as fast as we possibly can." She talked about what sorts of sounds the brain instantly responds to: a crack of a twig, rustling leaves, running water, sounds essential for survival. These are "broadband sound[s], multiple frequency," she said. "To pinpoint a sound, there are three pieces of information our brain must have. It must have some of the low frequency sounds, sounds below 1,000 Hz.; sounds above 3,000 Hz. and sounds above 5,000 Hz. If the sound contains all those frequencies, then we call it a broadband sound, and we can pinpoint it really accurately." Human voices do not fall into this range, she noted. "I have a dream: that all buildings one day will have these [broadband] sounds wherever the exits are, to enable anybody to actually evacuate in an emergency." There are buildings in the United Kingdom that have such systems, including businesses and homes. Withington demonstrated several broadband sounds, and played a tape detailing research with a group required to evacuate a smoke-filled ship, first with just the conventional exit locators, then with a little extra help from the directional sound exit locators. (Please note: if you have purchased the convention tapes, this section begins with the sound of a fire alarm. Do not panic.)
Then Jenifer Simpson of the Federal Communications Commission addressed the issues of video description and updated listeners on Section 255 of the Telecommunications Act. Section 255 "requires the manufacturers of telecommunications equipment, that's the guys who make the phones, and the providers of telecommunications services, that's the guys who sell you services, to make their products and services accessible to people with disabilities," she said. And that law only affects equipment manufactured after the law took effect on February 8, 1996. "So if you've got old phones out there, you can't complain and we can't do anything about it."
Informal complaints may be filed with the FCC by letter, fax, call-in, TTY, e-mail, audio cassette recording or in braille; there is no time limit for complaints, but consumers should file shortly after they discover the access problem.
Simpson recommended the informal over the formal complaint process; the formal complaint costs money (about $165), and requires certification of good faith effort and extremely detailed information. You can e-mail your complaint to [email protected].
Robin Short, assistant administrator of elections in Harris County, Texas, spoke about the process which led to that county's being among the first to acquire accessible voting equipment.
A highlight of the day was hearing from Erik Sandvold about his experiences as a narrator for the NLS talking book program. He's read all four Harry Potter books aloud, as well as "Chicken Soup for the Kid's Soul," "Men Are from Mars, Women Are from Venus," and many more. "It's really a unique pleasure for us to get a chance to meet you readers," he said. "It happens all too infrequently, and it really means a lot to us. What we do is a fairly solitary thing when we're actually doing the work, and to get out and get to see the very people we do the work for is very meaningful and much appreciated." Sandvold read aloud from "Harry Potter and the Sorcerer's Stone."
Captions
Cynthia Towers, convention coordinator, gave her listeners a look ahead to Pittsburgh. (For more details on next year's convention, watch upcoming issues of the Forum.)
Susan Crawford and the IDEA task force presented the report on what ACB needs to do to help build a better future for blind children. (For more details, see "Our Future Depends on a Better IDEA," October 2002.)
Captions
ACB Executive Director Charlie Crawford presented his report to the convention. (See excerpts, this issue.)
Following Crawford's report, the convention moved on to elections. After elections came resolutions and other ACB business.
After going to conventions since 1995, this was the largest showing I have seen on the last day of business. Usually, it is just us old diehards that are on the convention floor. Good job and way to go!
The convention wrapped up its business for the week and members left the hall with a sense of accomplishment and excitement as they prepared for "The Weakest Blink" and other enjoyable diversions at the Friday evening banquet.
Captions
Pat Beattie and Kim Charlson have a conversation while waiting for The Weakest Blink to begin.
I listened to most of the proceedings on ACB Radio and wished I had been there in person. But listening was the next best thing to being there. The audio quality was excellent!!! Keep up the good work, Jonathan!!! You did a splendid job with the audio portion. Hats off to ACB Radio.
Another year, another successful ACB convention completed. The ACB of Texas, the national office staff and everyone else involved with putting together the convention did an excellent job. We really enjoyed ourselves this year, significant because due to my unemployment we had to work a little harder to get the money together to go to convention. Thanks to the Illinois Council of the Blind for some help as I was one of their delegates.
1. By far my favorite event was the employment issues task force program on Sunday, June 30. I was quite disappointed that more people didn't show up, but those who did I believe gained a lot from this activity. It was a great way to spend four hours learning and reinforcing all kinds of things we need to know about seeking employment, ADA and on the job expectations. The best part for me was the mock interviewing where I was the interviewee and received some very honest, necessary feedback.
2. The presentation during the Sunday evening session by Linda Braithwaite on her experiences with the Mormon Tabernacle Choir. It just goes to prove that if we as people who are blind take the initiative and get out there, we can do whatever we set our minds to.
3. The presentation and demonstration of sound devices which could someday aid people who are blind in evacuating buildings, aircraft and/or passenger vessels. While I feel more research is needed, these devices offer great potential to improve safety.
4. The "Dine Around" activity hosted by people on ACB's
membership committee. We went with a group hosted by Terri Lynne
Pomeroy of Utah to Chili's. No, the highlight of the evening
wasn't Terri Lynne and I splitting an Awesome Blossom, although
that was very good. The best part of that evening was meeting
some of the folks I hear from regularly on the ACB list,
associating faces with e-mail as it were. Terri Lynne, I'll
split an onion with you anytime
5. The ACB Legislative Seminar. There are a lot of issues on our plate that we need to follow and Melanie and Krista did a nice job of summarizing them with enough detail so we could understand them and really advocate on them.
6. Chairing ACB's Constitution and Bylaws Committee. I love governance and internal issues and it was great to work with a fine committee and put forth amendments that the convention saw fit to pass. These amendments have improved our structure in some good ways.
(Editor's Note: The updated constitution is available at www.acb.org.)
7. The Braille Note User's Group. The Braille Note is constantly improving and we had a great opportunity to ask questions about current and soon-to-come features of the product and get answers from people who know what they are talking about.
8. The Friday night banquet. For the future, dispense with the guest speakers and just have entertainment like this. It's fun and a part of a true celebration of the completion of our convention.
9. Of course, the best highlight was meeting all of the people I met. It was great to meet people like Jo Taliaferro, Robyn Wallen, Jeff Frye and others. Again, that face/e-mail association thing.
Overall, again, great job on this year's ACB convention by everyone involved. I'm looking forward to Pittsburgh next year.
Houston was awesome! We had a super time and it was great to see some old friends and meet some new ones. The saddest part of any convention is having to leave. I was talking to Mark the other night and we decided why we like convention week so much. You see, for that one week of the year, the world is our way, the way the world should always be: large print and braille at every turn and people there to assist when you need help. It is just awesome to function so normally. Then you add in seeing old friends and making new ones. Not to mention the awesome Indian cuisine, Mexican cooking, and seafood we managed to devour.
All in all this was one of the best conventions ever.
We need a resolution to allow us to extend our days to 48 hours, so one can do everything they want to do and still not be too tired.
1. In previous years many people attended OpenBook user group meetings. This year, the list of user group meetings was expanded to include Kurzweil 1000, BrailleNote and perhaps others I was unaware of. Since I work for Kurzweil, I'm glad that we finally managed to have a user group meeting and equally glad so many people attended. That aside, I think expanding the list of user group meetings is a great idea! People use these products and developers need to know what people are thinking as much as people need to know what developers are working on.
2. The audible pedestrian signal on the corner near the hotel was terrific! It made the walk between the hotels easy, safe and quite pleasant. I've got a relatively inexperienced dog and giving him a good, simple walk after all the stresses of convention travel was highly beneficial.
3. Break-out sessions are a terrific idea! Let's face it, like it or not, we just don't have enough time to do everything. Getting people together who have particular interest in a subject is probably better than making everyone sit through long presentations they don't care about or understand.
4. As an exhibitor, I probably had a schedule that was different enough from most people's schedules that I missed the worst of the traffic. Having said that, I thought the hotel was terrific! Easy to get around! Decent restaurant service! Very helpful staff!
5. Although I never had a chance to read a single convention newspaper (sorry Penny) circumstances (and people who call themselves my friends) conspired to get me into the press room collating newspapers for a couple of hours. Since my so-called friends have spent long hours working in the press room for many years, I had some idea of what goes on in there. Living it for a little while has given me a bit more of a perspective though. Perhaps if more people committed a couple of hours of convention week to assisting ACB run the operation, fewer people would have to commit their entire week! Oops, this isn't supposed to be the "needs improvement" section.
6. This year VIDPI hosted a programmer's forum and a trainer's forum. Great idea! Make them longer, provide some demo time, make sure they're advertised! Attendees really liked these sessions.
I have only attended one other convention and that was in
Louisville two years ago. I don't remember there being a daily
paper waiting outside my hotel room each morning at 6 a.m. I
thought the paper was great and it was informative for changes
and news for that day. I looked forward to it. I never thought I
would wake up to a real morning paper and this is close enough.
It was my pleasure to help, albeit in a small way, to assist in the press room again this year, along with Penny, Jim, Sharon, Jean, Judi, Nancy and others. I cannot speak for anyone else, but as for me, I had a terrific time. The paper delivery is a very nice touch. It is good that a group of people from various areas can actually get together and accomplish this project. I hope to be able to participate again and will look forward to that. I liked the particular braille paper we were fortunate to have; the printers were top-notch. The ConventionEar was also a terrific idea -- go Texas Tattletale!
(Editor's Note: Many thanks to braillepaper.com and Enabling Technologies for the braille paper and braille printers that made the paper possible.)
The Texas Tattletale added a fine new feature to the convention. According to that authoritative source, I had left for an alien galaxy but came back when I discovered that the aliens had no five-year plan. (A comment on my rather obsessive and annoying interest in trying to think about and start getting ready for ACB's future.) That shot was right on target and gave me a laugh to rival some of those at the banquet. Well, we in ACB don't really have a five-year plan either. But you guys and gals have the aliens beat pretty handily in a lot of areas, so I guess I'll stick around for a while.
On behalf of the committee of the Durward K. McDaniel Fund, I want to thank everyone for their generosity and participation in making our fundraising effort a great success. We sold 134 tickets and earned $1,233.70.
Of course, we will have to subtract the cost of bringing two deserving first-timers, Eric Frey from Kentucky and Mike Hally from Minnesota, to Houston for this convention. We had some fantastic help getting ready for our party from Linda Bradley from Texas, Bernice Shulman from California and many others.
We are already planning another -- even bigger and better -- Mac-Hatter Party in 2003, so that we can continue bringing first- timers to ACB conventions. Next year in Pittsburgh, we will even have a parade so that people entering their hats can show off their creativity!
The DKM Committee is one of the best I have ever had the opportunity to work with throughout my long-time involvement with committees of every kind. I think this party was just the kind Durward would have enjoyed and I am sure he would have thanked you all for your participation.
I want to introduce my presentation this morning by giving you three snapshots to keep in your mind as we go through "The Grueling Report of the Executive Director."
The first snapshot is from a Wednesday night around 8 p.m. I was in a taxi on a cell phone calling Terry Pacheco, who was still hard at work at the national office three hours after most of us had left for the evening. It was two weeks before this convention was scheduled to begin, and I was calling to ask Terry a question about something or other.
Terry answered the phone, and I said, "Terry?" and she said, "I can't deal with it right now."
It seems that her computer had just died and she was worried that everything on it was gone.
The second snapshot is from last night. As I sat there in the audience listening to the Candidates' Forum, I noticed that almost everybody had a hoarse voice. And then I noticed how tired they sounded, and I thought to myself, "Why would anyone put themselves through this kind of grueling work to become a member of the BOP or the board of directors?"
The answer to that question forms the foundation for this report on the national office and why everyone there goes that extra mile to get the job done: If it's that important to our members and to those members who work the long hours on committees and on our boards of directors and publications, then it has to be that important to us as well.
The third picture is this: I have never heard so many "can I help you"s, so many "excuse me"s, so many "I'm sorry for being in your way, let me move this way or that way" as I have heard this week in our convention. And that's something to be very proud of. How often have we been informed by one person or another that blind people have an entitlement attitude and that we expect everything right now and if you're in my way it's because I'm blind and you're discriminating against me. This week proves to me, and proves to all of us, that this organization is filled with people who care enough about others to say "Can I help you?," "I'm sorry," "Excuse me." That's a real tribute to all of us.
The national office of the American Council of the Blind is just one part of a large and growing organization aimed toward a future of benefitting blind people all over this country. When I began working with Chris last summer, one of the first things we talked about was the need to reinvigorate and to expand our committees -- so that people who care enough to get themselves appointed to a committee, to focus in on a particular set of work challenges and to move those through to fruition and success are honored by our committee structure. Those people need to be supported and there is an ongoing partnership between the national office with all of our committees, to get the business of ACB done. I'm proud to say that our national office and our committees are really pumping out the work and we're working on all eight cylinders.
In partnership with the information access committee, we have visited with Microsoft and made some real progress in reconnecting the understandings between the two organizations and crystallizing the work that needs to get done so that blind people have access to the computing environment. In addition, the information access committee has also tackled issues that could be considered somewhat esoteric. For example, have you ever visited a government web site and attempted to access information that is downloadable only in a PDF format -- which turns out to be inaccessible to your screen-reading software. Well, lots of us have had that unfortunate experience, and for some of us, the inability to access critical information that is routinely available to everyone else who can simply read it from the computer screen can threaten our ability to do our jobs. Well, the information access committee has taken on this challenge, and that's the kind of work that only a committee of dedicated people can get done. I'm proud that we were able to support them through the efforts of the national office.
We continue to be proud of the environmental access committee and all the work that it has been able to do for us, especially in the "nuts and bolts" areas, like developing the ANSI standards that address the built environment around us. Because of people like Julie Carroll, Pat Beattie, Krista Merritt and Melanie Brunson, we have been able to influence those codes so that when architects go to build buildings, we don't have to yell at them about inaccessibility after a building has been completed. Because of the grueling work that has gone into writing those ANSI standards, we can celebrate increased accessibility that's included in the codes even before the architects begin to design our built environments.
All of our work can be guided by two rather spiritual concepts that, many of you know, I just love to talk about. Here they are. The first is that we should be doing to others what we want them to do to us. If we want our issues to be considered by others, then we really do need to consider their issues, because we're partners in the equation. It's not a question of one being better than the other, it's a matter of both of us needing to live in the same place. And the second issue is similar to that, and that is the notion of judging not, lest we be judged ourselves. It's so easy to jump to conclusions. It's so easy to blame other people. It's so easy to find an excuse for something's not getting done because somebody else has acted in bad faith. But the reality is that people normally don't act in bad faith. As we learned with the descriptive video victory, there were many people at the FCC, for example, who had a number of things to consider when they heard our petition for help. And through it all, because we were able to articulate the fairness and the rightness and the justness of blind people's having access to television in the same way that other people have access to it, no amount of objections from others, when considered from the perspective of fairness, could rise to the level of denying us our fundamental right to access the entertainment and information on the nation's airways, just like everyone else can.
Fundamental change is what ACB is about. The partnership between ACB and an attorney in Washington, D.C., and yes, even the federal government in terms of the National Science Foundation, all conspired in a positive way to culminate in our suit against the U. S. Department of the Treasury to answer this fundamental question: Why is it that when a cab driver or a clerk in a grocery store check-out line gives us a handful of paper currency, we have to rely on someone else to tell us exactly which bill is which?
Our law suit doesn't really address how the currency might be altered to enable us to know one bill from another, the suit simply says, we have the same right to access our currency as every other American, so do your job, Department of the Treasury, and make our currency accessible. This law suit, and our struggle to get video description on television, are really about our fundamental right to exist as a part of society, so that when we do participate in terms of accessible money, in terms of accessible television, we no longer see ourselves as somebody who has to wait or somebody who has to ask questions or somebody who has to rely upon somebody else to simply do what everybody else does. The most beautiful thing about accessibility is not just giving us what we need, it's empowering us to give back to the society of which we are a part.
So we're asking the U.S. Treasury Department to make the money accessible. We're not telling them how to do it -- because, guess what, it's their job to figure that out! But we will work with them, not as our enemies, but as our partners. We will work together to find ways of doing this that make it good for ACB, good for blind people, good for the vendors, good for the people who worry about cash machines, in effect, good for America, which translates into being good for all of us. We will win, and everybody else will win along with us!
Fundamental change in America's attitudes toward blind people is the guiding expectation of ACB and of all legitimate blindness organizations. Fundamental change means that people will begin to see us in a different way, invite us into their lives in a different way, and give us the opportunity to improve their lives as well as ours simply because we have formed a trusting relationship of equals, not a relationship of masters and slaves. So we in the national office are charged with the important duty of trying to administer and carry out the will of ACB in cooperation with the members individually and through their affiliates, and with the committees, to arrive at a successful completion of our resolutions, our goals, our values and our dreams. ACB is in the business of turning dreams into reality.
As we work toward fundamental changes, how do we measure whether we've been successful? The best measure of success for any organization is when people start coming to you for advice and assistance with the issues that are important to them, because they believe that you have credibility and the strength of conviction to move forward, and they believe that you've been successful enough in the past to predict success in the future. Let me tell you about Visudyne. A law firm in Washington, D.C., the second most prestigious one in the nation's capital, came to us about the Visudyne issue and said to us, and I will quote, "You know, I never really believed that blindness organizations were very effective on the issues of Medicare until I read about you guys." Now that is something that comes from a senior partner in the second most prestigious law firm in Washington, D.C. I call that success!
And as we move forward in partnership with that law firm, what will happen is a landmark change in the way the American government determines how it provides Medicare benefits across the board to all people who receive benefits from that program, because the complaint that it is likely we will file with the court essentially deals with the way Medicare decides if they're going to cover something or if they're not. No longer can we have a small room of bureaucrats deciding health care policy for the United States. No longer can it be a function of numbers, that if there are 10 million people who will be affected then we'll do it, if there are only 100,000 people, well, too bad. No longer will we allow any individual person's health to be held captive by a strategy that only considers dollars instead of people. The American Council of the Blind is pursuing this goal not just for blind people. Remember that our organization from our beginning celebrates the fact that we are part of a nation, we are part of a community, and all we're asking is an opportunity to give back to the community what we have so richly received from it. And we will do that with Visudyne.
We have members of Congress calling us about issues that affect blind people, and wanting to know our opinion. We even have the commissioner of RSA who called me one day and said, "I need to check out with you whether you guys would be offended by this." Now somebody must respect us somewhere to call us up and ask us that. Respect like that doesn't arise out of fear, but rather out of respect for what ACB stands for. We are a determined organization -- determined to uphold the value of blindness and blind people no matter what the consequences.
The national office is in constant contact with people outside the organization to form partnerships, to build strategies and to work with the people who can ensure that our issues are solved and that we move forward. And we've done tremendous work this year -- not just the national office, but ACB as a whole.
Inside the organization there are partnerships as well. It's important that the national office communicate over and over again with all the members of ACB, whether via the Internet, through the pages of "The Braille Forum," or on the telephone, talking to all the people who call us every single day to talk about what's important to them.
"The Braille Forum" is the finest magazine in this country for blind people. I am extremely proud of the work that Penny and Sharon pour into that publication every day and of the support and assistance they get from the board of publications and of all the people who write articles for "the magazine." You guys make it work; you're the ones who put in that information, and we all celebrate what you have to say, so we thank you.
The work of advocacy is never done. Melanie Brunson and Krista and Barbara, they're in there plugging away every day. Look at the legislative agenda for ACB this year. Have you ever seen so many bills out there on so many diverse subjects, whether it's broadband, bridging the digital divide, election reform, Medicaid reform? ACB's voice is in every single piece of legislation, and we're a part of the process. Most of those pieces of legislation that we're supporting will pass. And they will pass not just because of ACB, but because ACB knows that we can't do it alone. Our advocates know how to get the right people with the right hats on to go charging in there and make sure the truth is told and the bills are passed. Thank you to our advocacy people.
For Terry and her new assistant Crystal, a big thanks for all the hard work that they've done on our behalf in this convention.
We've lost people this year. We lost Anne Fesh. She passed away, and that left a big hole in the national office and in this organization, because Anne did so many things we never realized she did, until somebody said, "Where's that?" "Oh, yeah, where is it?" And then we figured out Anne must have done it, and we had to go digging through Anne's 50 million volumes of notes to find what it was that we needed to find. Anne Fesh was a wonderful person, a great contributor to ACB, we miss her and we love her and we know that the work that she did in the national office on behalf of all blind people will never be forgotten. It will always be a remembrance of how good it is to work for an organization such as this.
We also lost Cynthia Lovering, fortunately on a better note: she got a better job -- there's this thing called money, you know ...
I was very fortunate to get Patricia to come work for me and, in fact, I stole her away from Terry right at the time when Terry needed her the most. Patricia's doing a wonderful job with me, and I really do appreciate her work at the national office as well.
We have a new member on the staff, Dalyn Scott, who is our office manager. She's taken on responsibilities for the electronic equipment, the computers, for processing bills and information, for mail, and for a number of other things at the ACB national office. I can tell you that while Dalyn obviously had a lot to learn when she first came in, we are already in good shape in terms of our Internet connectivity -- it is twice as fast at half the cost as when she came in. For those of you who use the telephone system at ACB's national office, you've probably shared the heartburn and heartache of trying to deal with our phone system. We almost had to ask for therapy sessions, but the good news is that we've finally connected up with the people who actually manufactured the phone system and the software and the computer, and they have assured us that installing the appropriate components and then upgrading the software -- and that's being done today -- will fix the problems we had with the system so that by Monday, this coming Monday, not two years from now, you'll be able to call into the national office and things should work. We appreciate that.
Let me wind down this report with a view toward the budgetary situation at the national office and the future of ACB. I talked about fundamental changes in the way that this society relates to blind people as a result of ACB's work this year. That doesn't come cheap. We've been able to leverage a lot of cost savings, we've been able to utilize human resources such as committees and such, we've been able to form partnerships outside the organization, and sometimes those partnerships actually result in financial support as well as human support for the operations of the organization, but our fund-raising efforts at ACB must continue, and as much as I realize that all of us never want to hear, "Umm ... can you guys spare a little more money for this or that project, this or that raffle ticket, whatever?," while we may not want to hear it, we all know in our hearts that what those things really are are donations to the future that reap dividends for our children. That's the important thing to remember. I'm pleased to say that President Gray and the board are working hard to generate new revenues for the organization, and to find ways to secure financial security for the future, and I am appreciative of all that leadership and effort that we've received. So thanks Chris and all of you guys.
We have managed to save lots of money at the national office through management initiatives. I won't go into all of the details, but I can tell you this: we have saved money simply by taking a look at certain things we've used in the past and re- evaluating them, to see how we can get the job done better with less costly equipment and services.
I will end where I started, and that is with the pictures of the people. This convention is about the people first, and that's what we've done. Every time we've said "excuse me" or "can I help you?," every time that we've asked for a donation on behalf of a cause that benefits people, every time that our candidates have gotten up and gone hoarse in front of us trying to just share with us what they want to do for all of us, every time the national office staff lifts up a phone, sends a fax, or an e-mail, works on behalf of the organization, every time that any one of those actions happens, there is something that stands right in front of everything else, and that is the image of the blind person who says, "I can do it. I can do it because we are doing it and because I know I have family to support me and a dream to move me and an organization that can make it come true." Thank you.
Caption
Charlie Crawford presents the grueling report of the executive director to the convention.
At its 41st annual national convention, the American Council of the Blind welcomed and honored more than 30 new life members. A dozen dedicated individual advocates for people who are blind stepped forward to purchase their own ACB life memberships thus joining an ever-growing honor roll of ACB life members. This distinguished group included the following individuals: Roger D. Petersen of Mountain View, Calif., Bernice M. Kandarian of Mountain View, Calif., Jennifer Knight of Lansdowne, Pa., Jo Taliaferro of Grand Rapids, Mich., Barry Levine of Homer Glenn, Ill., Nancy S. Goldsmith of Fort Worth, Tex., Dick Seifert of Little Rock, Ark. (former ACB board member), Frank H. Kells of Phoenix, Ariz., Brian Lingard of Ottawa, Ontario, Canada, Ellen Telker of Milford, Conn., Donna Seliger of Des Moines, Iowa (ACB's national secretary), and Glenn McCully of Auburn, Wash. These stalwart ACB activists were thanked for their continuing commitment to ACB and its goals and objectives by the convention.
A number of individuals also honored spouses or close friends and colleagues by purchasing ACB life memberships on behalf of admired and beloved cohorts. For example, ACB life member Wanda Eller honored three deserving colleagues with life memberships -- Harvey H. Miller of Brevard, N.C., Rob Hill of Tulsa, Okla., and David L. Dowland of Tulsa, Okla. Similarly, Jeannette Gerrard honored her close friend Rita Perry of Beltsville, Md., with her own life membership. Bud Keith honored his wife, Billie Jean Keith of Arlington, Va. (newly elected ACB board member), with her brand-new ACB life membership. Mrs. Mary Ellen Johnson joined with the members of the Little Rock chapter of the Arkansas Council of the Blind to honor her husband and longtime friend and volunteer, Leroy Johnson of Springdale, Ark., by presenting him with a life membership.
In addition, several affiliates and one more local chapter honored special and deserving members by purchasing for those members ACB life memberships. For example, the Virginia Association of the Blind so honored four of its members -- Rick Barry of Newport News, Kenneth Lovern of Roanoke, Jennie McKenzie of Dale City, and Jeff Mikkelson of Virginia Beach. The Mississippi Council of the Blind honored three of its most dedicated members with ACB life membership plaques -- Mike Duke of Jackson, Lavada Caffey of Jackson and Peggy Maddox of Jackson. The American Council of the Blind of Ohio presented brand-new life membership plaques to two of its members -- Ken Marrs of Covington, Ky., and Deborah Kendrick of Cincinnati, Ohio. The California Council of the Blind surprised and honored its outgoing president, Catherine Skivers of Hayward, with her life membership plaque. Similarly, the Missouri Council of the Blind presented its outgoing president, Chip Hailey of Joplin, with his ACB life membership plaque. The Kentucky Council of the Blind presented one of its longtime dedicated activists, Don Franklin of Louisville, with his new ACB life membership. Last but far from least, the Austin chapter of the American Council of the Blind of Texas honored its spark-plug member Edward F. Guerra of Austin with an ACB life membership.
As an ACB life member myself, I could not be happier in congratulating and welcoming this bumper crop of new ACB life members to this growing circle of dedicated ACB supporters. I hope that their example and the example set by their sponsoring affiliates, chapters, friends, spouses and colleagues in arms will serve to inspire more individuals and groups to take similar actions to step forward themselves, or to honor one of their living members with an ACB life membership. ACB life membership dues are $1,000, but this hefty commitment can be payed in up to five annual installments of $200. Interested parties should contact ACB's chief financial officer, Jim Olsen, at ACB's Minneapolis office for additional details concerning ACB's life membership program. He can be reached at 1-800-866-3242 during normal business hours (Central time).
This year, VIDPI had a really good convention experience in Houston. Frank Welte, the vice president and program chair, did a great job with the program. Once again, Rob Hubbard was working hard recording the whole proceeding. We held the usual vendor showcase on Sunday. On Tuesday, we held the in-depth seminar, the first part presented by programmers and application developers and the second part was a panel presented by trainers of specialized and adaptive software. Thursday, we had a luncheon followed by the annual business meeting.
At the annual meeting on Thursday, several items were discussed that should be mentioned here. First, in view of the annual dues increase on the national level, it was felt that the VIDPI dues should be increased. Thus, the bylaws were amended to increase the dues by five dollars per year, not to be prorated; on each of the four membership levels, the dues will be $10, $15, $25, and $30.
Elections: The position of board member having a three-year term, with a maximum of two terms, was up for election. Robert A. Jones, Bob, who held that position, had to step down because of term limits. Milton M. Ota of Honolulu, also the VIDPI web master, was elected to that position. All present at the meeting were witness to Bob's promise, in spite of losing his elected spot, to continue as bartender at the annual VIDPI mixer. Then, he was thanked by all for his years of service as a board member.
VIDPI, an organization promoting the interests of computer users from the humblest to the very expert, seeks more members. We have a tape newsletter, a weekly chat room, an e-mail list, and at the ACB national convention, we award the Kellie Cannon scholarship. Last, but not least, we put on an outstanding convention program. To learn more about VIDPI, visit our web site at www.acb.org/vidpi/.
This year at ACB convention, VIVA held its 24th annual meeting at which time we elected the following officers and board members: president, Brian Higgins; vice president, John Fleming; secretary, Barbara Alexander; treasurer, Charlotte Noddin. In 2003 we invite all veterans and those of you concerned with veterans' issues to join us to celebrate our 25th year as an ACB affiliate.
It was my pleasure and privilege to be elected as President of the American Council of the Blind Government Employees. We welcome blind and visually impaired people who are working in government entities county, state and federal. We also enjoy having retirees from government service of which I happen to be one.
Our dues are $10 per year. They are due by January 1, 2003. Please forward your dues to Skip Hayes, 426 E. Columbia St., Falls Church, VA 22046.
We have a little publication which is called the Bureaucrat . So I hope all of you bureaucrats will come and join us and help this affiliate to grow. If you have any questions, contact me at (510) 357-1986 or write me at Catherine Skivers, 836 Resota Street, Hayward, CA 94545. Hope to hear from you soon.
At the LUA business meeting Monday, July 1, 2002, the following individuals were elected to serve on the board of directors: Rachel Ames of Arkansas, Barry Levine of Illinois and John Taylor of Iowa. Paul Edwards was elected LUA secretary to complete the one remaining year of Terri Lynne Pomeroy's term.
The LUA bylaws were amended to raise the national dues to $12 per year to compensate for the increased per capita dues ACB will be charging in 2003.
All convention events were well attended and the program extremely well received this year. Stay tuned!
This summer in Houston, Guide Dog Users, Inc., celebrated 30 years of proud history serving its membership of nearly 1,200 guide dog handlers. At GDUI's convention, held in conjunction with that of ACB, attendees were treated to a wide variety of activities including everything from doggy massage sessions to an informative panel discussion advising handlers on the serious consequences of loose dog attacks and how to fight back. Humans and canines alike played Jeopardog hosted by Alex Trebark, and round-table discussions explored advocacy issues faced by handlers as well as the top tips and tools for knock-'em-dead dog grooming.
At GDUI's business meeting, Debbie Grubb was unanimously re- elected to serve a second term as president; DeAnna Quietwater Noriega and Sheila Styron were elected first and second vice president, respectively. Rox'e Homstad is GDUI's new secretary; Jane Sheehan continues her services as treasurer and office manager. Board members are Patricia Kepler, Audley Blackburn, Lisa Salinger, Susan Kamrass, Mary Susan Orester, Mitch Pomerantz and Jenine Stanley. Heartfelt thanks go to Sanford Alexander, Ginger Bennett, Judi Cannon and Marlaina Lieberg for all their efforts as past officers and directors working on GDUI's behalf. Very special thanks also go to Ginger Bennett and everyone else who contributed to making GDUI's 30th annual convention celebration in Houston such a success.
This year's luncheon celebration was a true convention highlight, featuring almost all GDUI's presidents from 1972 to 2002, who shared their memories of GDUI from their unique historical perspectives. Cathy Gleitz, GDUI's president in 1972, kicked off our program, and we heard a pre-recorded message from former president George Bush congratulating GDUI on 30 years of service to guide dog handlers. GDUI's luncheon concluded with a song written especially for the occasion.
To hear former president Bush's message, GDUI's 30-year anniversary song and much more, visit the web site at www.gdui.org.
(Reprinted from "The Houston Chronicle," July 3, 2002.)
Massage therapist Carla Campbell worked her way down a client's back Tuesday, pressing on the long muscles that bracket his spine.
After she smoothed out a knot of muscle between his ribs, he yawned loudly -- muzzle agape -- and then licked his lips contentedly. Baxter, a 5-year-old golden retriever, was too relaxed to "woof."
"It's like Prozac for puppies," said Nancy Trzcinski, 45, of North Adams, Mass., laughing at her guide dog. Guide dogs like Baxter are getting some much-needed extra TLC during the American Council of the Blind's annual national convention in Houston this week.
Guide Dog Users, Inc., a non-profit advocacy organization for the blind and guide dogs, turned Room 462 of the Adam's Mark Hotel in west Houston into a pooch pampering palace.
Canine massage brings to mind visions of spoiled lap dogs, pet spas and indulgent owners who set up play dates for Fluffy and friends.
But proponents say it relieves stress, restores mobility and helps maintain fitness and optimum performance in a working animal -- be it a herd dog or a racehorse.
"The gift of touch is a wonderful thing," said Mary Schreiber, founder of Equissage, a leader in canine and equine massage therapy in the Virginia horse country.
Animal massage is not a new idea. "It goes back thousands of years," Schreiber said from her home in Round Hill, Va. "I've heard of a form of sports massage, a stroke called percussion, being done by the Greeks on horses 5,000 years ago."
Alternative, holistic veterinary treatments such as therapeutic massage are catching on with Americans, especially among those with working animals. The search dogs who played such a vital role in the aftermath of the World Trade Center attacks received massages daily.
"As well as causing pain and discomfort, a buildup of muscle tension impacts a dog's ability to concentrate," said therapist Campbell, "causing many to become anxious, hesitant and distractible or to tire easily."
None of which is desirable in a working dog, especially one whose job is to guide the blind and visually impaired around obstacles or across a busy street. But nowhere is a guide dog under more stress than in the fast-paced, chaotic convention environment, which is often crowded with people and other dogs.
Guide dog users say their patient pups are called on to carry more of the load at a convention because the humans are in an unfamiliar place. In a normal environment, it's more of a 50- 50 partnership, they say.
"I work Adrienne harder in an environment like this than I do at home," said Glenda Born, 51, of Austin. Adrienne, an 8- year-old black Labrador retriever with a salt-and-pepper muzzle, needed the massage.
"Right now, I'm going over the muscles that control the ears and eyebrows," said Campbell, moving her healing hands over the dog's head. From the knots of muscle, she could tell Adrienne had been furrowing her brow a lot in near-constant, intense concentration.
Campbell, 31, also certified in equine massage, explained what she was doing as she moved down the dog's body. "I'm working on the wrist because these guys pound the pavement a lot," she said.
Adrienne let out an occasional canine grunt of contentedness, but she didn't wag her tail, an action humans associate with a happy dog. "They don't do a lot of tail-wagging during the massage," said Campbell, who lives in northern California. "Instead, they do a lot of lip-licking and yawning."
Campbell ended the session by pulling gently but steadily on the dog's tail to make sure the bones were in alignment and to stretch the back muscles. The Lab lay like a throw rug until Campbell called her. Then Adrienne got up and sat so close, she nearly ended up in her lap.
"If she sits on you, she's claimed you," Born said before she and Adrienne headed back downstairs to the conference.
Working on the dogs at convention was a truly rewarding experience. I was thrilled to see the care so many handlers put into their guides' grooming, health and mental/emotional well-being. It was also extremely gratifying when people came up to me some time after their dog's massage and told me they had seen improvement -- sometimes rapid and radical improvement -- in their dogs' attitudes, willingness and apparent comfort levels post-massage. I also got to touch a lot of canines over the week, and that, in and of itself, did me a world of good, since I went to the convention sans dog.
Congratulations to each of the 28 ACB scholarship winners for this school year!
Among those students who received scholarships from the Floyd Qualls Endowment Fund were: Greg Aikens, Mariyam Cementwala, Judy Jackson, Rhonda King, Derek Lane, Terese McCabe and Paula Warren. Greg Aikens is a freshman at Wake Forest College, studying music. Mariyam Cementwala, who is majoring in human rights law at the University of California-Berkeley, will be attending college next semester at the National University of Ireland in Galway. Judy Jackson is finishing up her coursework at the International Business Institute in Lubbock, Texas. Rhonda King is majoring in government at California State University-Sacramento. Terese McCabe is majoring in English at the University of California-Los Angeles. Paula Warren is working on her Ph.D. in educational, rehabilitation counseling at Mississippi State University.
Barbara Siple received the William G. Corey Scholarship. She attends the Fielding Institute and is working toward her Ph.D. in clinical psychology. Angela Craddock, who received the Kellie Cannon Scholarship, attends Northern Virginia University, and is majoring in industrial technology and business information systems.
The winner of the Arnold Sadler scholarship is Catherine Armstrong. Catherine attends the University of Pittsburgh, and is working toward her master's degree in rehabilitation counseling. Sue Slater, whom many may know as the coordinator of the first ACB cruise, is the recipient of the John Hebner Memorial Scholarship. She attends the Forest Park Community College where she is majoring in marketing and web design.
Paul Sullivan is the recipient of the Eunice Fiorito Memorial Scholarship. Paul attends Florida State University and majors in political science. Monty Cassellius is the winner of the NIB/Grant M. Mack Scholarship. He is completing a distance learning program from California State University-Dominguez and is working toward a degree in assistive technology.
Jeremy Johansen is the recipient of the Dr. S. Bradley Burson Memorial Science Scholarship. He is a student at California State University-Santa Barbara, majoring in mechanical engineering. And the winner of the Dr. Mae Davidow scholarship is Rhonda Baranowski. She attends Northcentral Technical College, where she is majoring in assistive technology.
Mary Rogers received the Bay State Council of the Blind Scholarship; she attends the University of Massachusetts-Amherst, and is seeking a degree in social work. Paulette Foss and Alyssa Webb were the winners of the ACB of Colorado scholarships. Paulette studies at the University of Colorado-Boulder, working toward a Ph.D. in cultural anthropology; Alyssa attends Graceland University, majoring in elementary education. The Richard Bennet of Maine Scholarship was awarded to Sherry Belka, who attends the University of Maine, majoring in business.
Linda Bolle received the Alma Murphey Memorial Scholarship. She attends Antioch New England Graduate School, majoring in psychology. Chris Cooke and Erin Lauridsen received scholarships from the Oregon Council of the Blind. Chris, who is majoring in naturopathic medicine, attends college at the University of Oregon at Portland, and Erin majors in English and psychology at Pacific University in Seattle. Jamie Heatwole received the ACB of Maryland Scholarship. She is a student at Western Maryland College, majoring in philosophy and religious studies.
The Dr. Nicholas DiCaprio Memorial Scholarship was awarded to Mark Kueffler for the second year. He attends the University of Wisconsin-Menomonie, and majors in vocational rehabilitation counseling. Louis Marquez received the Buckley Memorial Scholarship; he is a student at Bridgewater State University, majoring in social work.
Cathy Schmitt-Whitaker and Deb Marinos received scholarships from the Ross N. and Patricia Pangere Foundation for the Visually Impaired. Cathy Schmitt-Whitaker is working toward a Ph.D. in educational organization and organizational leadership at the University of LaVerne. Deb Marinos is another individual completing university work through distance learning. She attends George Fox University in Newberg, Ore., and is majoring in management and organizational leadership.
In addition to their scholarships, each winner received a software package from Kurzweil Educational System; nine of the winners also received vouchers from Freedom Scientific.
Many thanks to all of you who help in this worthwhile effort.
The editorial staff reserves the right to edit letters for clarity, style and space available. Opinions expressed are those of the authors, not those of the American Council of the Blind, its staff or elected officials. "The Braille Forum" is not responsible for the opinions expressed herein. We will not print letters unless you sign your name and give us your address.
I would like to express my appreciation to the American Council of the Blind and the Floyd Qualls family for awarding me the 2002 Floyd Qualls Memorial Scholarship. I am so pleased and happy that your committee selected me to receive this award! I would also like to extend my gratitude to all members and friends of the American Council of the Blind. It is quite an honor to be included in the list of scholarship awardees. I hope to continue the tradition of academic excellence established by previous recipients of the Floyd Qualls Memorial Scholarship.
In addition, special thanks to the American Council of the Blind for inviting and including me in the ACB 2002 national convention. I enjoyed meeting with ACB members and other scholarship winners. I hope to continue the new friendships that were made during my convention experience.
The support your organization has expressed by this award goes further than mere financial aid. It is encouraging to me as a doctoral student to have such a distinguished organization as the American Council of the Blind show faith and confidence in my abilities. Thank you for giving me the opportunity to represent the American Council of the Blind and the memory of Floyd Qualls through this honor.
Good morning, ladies and gentlemen. I am honored to be here today and to talk to you about the relationship between vision loss and body rhythm disorders -- particularly those involving sleep. My investigations into this topic have taken place primarily since 1992, at the University of Surrey in England.
As you all know, sleep plays a very important role in the quality of our day-to-day lives. It's interesting that one doesn't really notice how important sleep is until things start to go wrong. Your inability to sleep can dominate your nights, causing frustration if you're lying awake and can't get to sleep, or you get to sleep and then wake up shortly afterwards. It can affect your relationships severely if you're tired and irritable during the day, or you're continually awake at night and your partner isn't. Getting good sleep is vital to our well-being and quality of life.
Because the medical community has started to recognize that the study of sleep deserves its own medical specialty, departments of sleep medicine seem to be springing up all over the country nowadays.
There are dozens of different sleep disorders. One that most people have heard of is really a breathing disorder. Sleep apnea is characterized by frequent awakenings at night because a person's airway becomes temporarily blocked as he or she falls asleep. There's also insomnia, caused by a variety of different disorders, including stress and just coping with life's events. Insomniacs can have trouble getting to sleep or staying asleep during those nighttime hours when everyone else finds it convenient to sleep. There are also age-related sleep disorders. People notice as they get older that they start to want to go to bed earlier, and to wake up earlier, and they don't sleep as long at night. There's also a whole series of disorders such as sleepwalking, nightmares or night terrors, which are often observed in children but also occur in adults. There's a whole range of different sleep disorders, all of which are found in people across the whole population. They're not necessarily restricted to people without sight; they happen to everyone equally. However, there is a group of disorders which occurs mainly in people with total blindness, and these are the disorders that I want to talk to you about today.
This set of disorders, which affects the majority of people with total loss of light perception, particularly affects the timing of sleep.
All of our daily body rhythms are controlled by the so- called body clock; its proper name is the circadian system. "Circadian" comes from the Latin "circa," which means about, and "deas" for a day, so a circadian rhythm is a rhythm which happens once a day, i.e., a 24-hour rhythm. For example, your natural body temperature fluctuation is characterized by a 24-hour rhythm. Your body temperature reaches its lowest level around 6 a.m. and then it gradually rises through the day and peaks about 12 hours later. Many hormones also exhibit variations throughout the cycle of a day. There's a hormone called cortisol which increases just before you wake up in the morning to help you prepare your body for the day and then it gradually falls through the day to reach its minimum just before you go to sleep. There's another hormone which many of you may have heard about called melatonin. Melatonin is a natural hormone produced by the pineal gland which is in the brain, and melatonin is only produced in the dark. Its release is the body's signal to tell it when night is beginning and then when to start sleeping. So usually melatonin is produced at night and light in fact stops the production of melatonin. If you shine a light at someone when their body is producing melatonin at night, melatonin production ceases. Because of this, it's often called the hormone of darkness or sometimes the Dracula hormone, and it's the body's internal time cue to tell it when night's happening and it's no longer daytime.
There are many other functions that are controlled by the body's clock. You'll notice that your digestive system changes across the day. If you eat a large meal just before you go to bed, you're much more likely to have heartburn or to have problems after that meal than if you eat the same meal in the middle of the day. The digestive system is controlled by this clock to time how well we can digest food after a meal. How alert you feel and how well you can perform are also affected by your body clock. And of course, sleep is very well controlled by this body clock.
We know that your body's clock is, in fact, situated in the brain from a variety of different animal studies. If you take parts of the brain out where the clock is situated, the animal loses its rhythmicity. And if you take that bit of the brain out and put it into a dish on a bench, it keeps on ticking. These cells have an innate ability to keep on ticking even if they have been removed from the animal.
So we have these many thousands of individual clock cells which come together to control the timing of our body rhythms. These clocks, however, don't work on an exactly 24-hour cycle. When you take these cells out and look at the timing of their rhythms, they're not exactly 24 hours, and they need to be reset so that the internal body clock interacts properly with the outside world. We know, from a variety of sources and experiments, that light is the most important time cue to reset body rhythms.
Some of the earliest studies done on body rhythms and sleep involved putting someone in a cave for several months without any information about light or time of day. These studies were first done in France, then repeated later in Mammoth Caves, Ky. The researchers lived in the caves for several weeks at a time, and they found, without any intrusion of light, that their sleep patterns and body rhythms were running slightly longer than 24 hours each day. Their body clocks were actually running on a 24.5 to 25-hour day. In other studies, we put people in a laboratory in either very dim light or complete darkness for several weeks at a time and we have found exactly the same phenomenon: If you take away that light information from the body clock, then subjects start to run on a day that's slightly longer than 24 hours.
There are other situations where the importance of light is apparent, including jet lag and having to cope with shift work. When people rapidly change their light-dark information, they develop sleep disorders and body rhythm disorders because their bodies can't keep up with the rapid changes in their light-dark cycles. If light is the most important time cue in keeping our body rhythms on a 24-hour day, then the obvious question is, what happens if people lose their sight and if they lose their ability to perceive light.
This question was first explored shortly after the conclusion of the Second World War by a German scientist called Ramlesh. He noticed differences in the body temperature, the heart rate, and the blood pressure rhythms of different types of blind people when he compared them to sighted control subjects. He didn't really know what might be causing these differences, but, since then, many studies have been done to investigate the effects of different types of blindness and loss of vision on sleep and circadian rhythms. I'm going to summarize some of these studies for you today.
First of all, there have been many surveys done concerning sleep disorders in the visually impaired population, and all the studies show that blind people have a higher incidence of sleep disorders than the sighted population. Now, depending on where the studies were done and the techniques used, it turns out that somewhere between 20 and 80 percent of blind people have been shown to have some type of sleep disorder. We did a study with the Moorefields Eye Hospital in London of 400 people who had been registered as blind with different types of visual loss, and we found that 50 percent of people who had some degree of blindness had a sleep disorder, whereas only 16 percent of the sighted controls had a sleep disorder. And then when we examine people who had no perception of light, nearly two-thirds of them had a sleep disorder. There was a greater incidence of sleep disorders in people with total blindness compared to other types of blindness. And not only was the incidence of sleep disorders greater, but the severity was too, i.e., when we rated their sleep disorders, people with no light perception had worse sleep disorders than those registered by people with some degree of light perception.
However, these kinds of surveys don't prove a link between blindness and sleep disorders per se, because, as I explained before, there are many different types of sleep disorders and there are many reasons why people might have developed a sleep problem. So we needed to do some more detailed research to really assess whether circadian sleep disorders were related to different types of blindness. Over the past eight years we've studied more than 80 blind people for a month each. We asked them to keep daily sleep and nap diaries. We also asked them to wear a simple watch-like device which measured their activity rhythms, and from that we could assess quite well whether they were asleep or awake. We asked people to rate their moods on a scale from 1 to 9 on how alert they felt, and to perform a simple auditory performance test. We also asked them to collect urine samples for two days a week, so we could measure the hormones melatonin and cortisol. With these objective techniques, we have been able to work out the timing of our subjects' body clocks. From our studies of these 80 subjects, we have found very striking differences between people who have some degree of light perception and those with no light perception. About three- fourths of people with some degree of light perception have normal sleep patterns and normal circadian rhythms. So although these people may indeed have sleep disorders, their disorders are caused by something other than a problem with their circadian rhythms.
However, we found that three-fourths of people with total sight loss had a circadian or body clock disorder. We have found that body-clock problems are even worse for people whose eyes have been removed. One hundred percent of people we've studied who don't have eyes have this circadian sleep-wake disorder.
The types of altered circadian patterns that we have observed are the same free-running rhythms that other scientists observed in those people who spent time, without light, in caves.
We find that totally blind people who live on a day-length which they think is 24 hours, actually live on a day which is a little longer than that, and that their body clocks actually tend to send them to sleep about a half hour later each night. So, for example, say you went to bed at midnight last night; then, tonight your body clock will send you to bed about 12:30, and tomorrow, it will be 1 a.m., and the day after that, it will be 1:30, and so on, and so on. And that goes on and on and on continually. The types of symptoms that people experience are cyclic sleep disorders. So, you might be in a good sleep phase, where your body clock's in a normal position at a normal time and you have no problem sleeping and feel great all day. But, then, you gradually slip into a bad sleep phase where you start to have trouble sleeping at night and then feel very tired during the day -- and maybe you'll take daytime naps, a lot of daytime naps, even if you don't want to. And then you'll gradually start to slip out of that bad phase again and start to get into a good phase, and continually cycle on this good-bad, good-bad cycle. You'll actually feel exactly the same as you would if you were experiencing jet lag. A cyclical sleep disorder is exactly comparable to continually flying round and round the world but never quite catching up with the local time.
There is another type of sleep disorder which we observe in totally blind people, and this is an extreme version of whether people are owls or larks. Most of you probably have a preference about whether you want to go to bed early (in which case you're a lark) or whether you want to go to bed late (in which case you're an owl). When we have surveyed blind people and asked them their preferences, we have found a wide range of morning-vs.-evening people across the population as a whole. But in totally blind people we find extremes of these very normal tendencies to be larks or owls. We find people who want to go to sleep at 4 or 5 o'clock in the afternoon and then wake up at 2 o'clock in the morning. These people have something called advanced sleep phase syndrome. There's also an extreme delayed sleep phase syndrome, where people want to go to bed very late, around 4 or 5 o'clock in the morning, and not wake up until midday or 1 o'clock. These conditions do happen in the sighted population but in much lower numbers than in the totally blind people that we've studied.
There are probably some of you thinking, "Well, I have no problems. I can sleep perfectly well." And that's true in about 20 percent of the people we've studied. So 20 percent of the people with no light perception have no problems at all.
So why do some people have disorders and some do not? Well, first of all, it seems that a very small amount of light perception appears to be enough to keep the body entrained to a 24-hour day. The amount of light perception that is required to keep people on a 24-hour daily rhythm is different from the amount of light perception that is necessary for vision. The circadian system has a different threshold for light than we use for vision. This is why most of the people with some degree of light perception in our study had normal rhythms, even though they were registered as blind.
But then, there are also those people with no light perception at all who sleep on a 24-hour schedule with no problems. In 1995 at Harvard, people who had no light perception and no sleep problems were studied. We found that even though they had no positive results for any of the ophthalmologic tests that were administered, they still responded to light with normal melatonin rhythms. When light was shone at their eyes, they stopped producing melatonin. So the light was getting to the brain and it was affecting the body clock even though they weren't able to perceive the light visually.
We know the perception was taking place through their eyes, because, when we repeated the study and covered the subjects' eyes, the melatonin rhythm wasn't affected at all. So there's a small number of people who have so-called subconscious or hyperthalamic light perception, which is light perception which is being used for the body clock but isn't being used for vision.
We think that there may be specific photoreceptors in the eye which are different from rods and cones which are used for seeing light for the body's clock. We also think that blue light in particular is the best type of light to reset the body's clock, and that these photoreceptor systems are perceiving blue light preferentially.
Our studies lead us to believe that there is a potentially serious problem in terms of body rhythm disorders for people whose eyes have been removed for cosmetic or other medical reasons. We believe that people's eyes, even though they are not being used for vision, may still be fulfilling a role in perceiving light for the body clock.
We have also examined different types of blindness to see whether there's any particular relationship between a particular condition and sleep disorders, but we still haven't been able to conduct a large enough study to arrive at definitive answers. We studied about 20 people with retinitis pigmentosa, and most of those people had normal rhythms, so we don't think that RP greatly affects one's ability to perceive light for the clock. But there is a higher incidence of disorders in people with glaucoma and people with retinal detachments. Although we don't know why that is yet, we'd like to study that further to see if we can find the link between those conditions and sleep disorders.
People often ask us whether there are differences between people who were blind from birth or people who became blind later in life. Once again, all our studies have been too small to draw definitive conclusions. At this point, there don't appear to be any differences between people who are blind from birth and people who became blind later in life.
So we've established that these disorders exist, but what can we do about it? Well, if we were trying to cure jet lag or shift-work disorder, the first treatment we would ordinarily think of would be light. We'll use light to reset their rhythms to the 24-hour day. But of course this isn't an option for most people who are totally blind.
Most of you have probably heard of melatonin pills. Melatonin has been available in health food shops for many years now, and many claims have been made about melatonin as some sort of a wonder drug. I'm afraid I'm here to tell you that it will not make you live longer, it will not cure cancer, it will not make you look younger, and it will certainly not improve your sex life. All of these claims have been made for melatonin, and they are not true.
However, melatonin does have some good uses. It does two things if you take it: melatonin helps you fall asleep. It isn't a sleeping drug; it doesn't knock you out, it doesn't make you sleep, but if the conditions are right -- if you're lying down and quiet and trying to sleep, if you take melatonin about an hour or two before going to bed, it will help you go to sleep. But the more important property of melatonin is that melatonin can shift your body clock to a different time of day. So depending on the time that you take melatonin, it can either shift your clock forward to an earlier time or shift it back to a later time.
It isn't really the clock time of day that's important when you are taking melatonin, it's your own internal body clock time that's important. In order to shift your clock forward or backward, you have to take it at the right time according to your own individual body clock. If you take it at the wrong time, melatonin could make your sleep problem worse. The way to take melatonin to make sure you time it right is to check your body rhythms first. One way to do this is to keep sleep diaries over several weeks or several months, and to use these to try and work out the timing of your body clock. Another -- and better - - way to do it would be to collect urine samples and then to consult with your physician to try and work out the exact timing of some of your hormones, and then from that to predict the best day to start the melatonin treatment to give you the best chance of resetting your clock.
As a rough rule, if you are taking melatonin of your own accord, you would want to start the melatonin treatment when you were just going into a bad phase. You would start melatonin treatment about bedtime or an hour or so before you wanted to go to bed, just as you were starting to go into a bad sleep phase. If you were to take it at another time of day, or if you were to take it at a different phase of your sleep cycle, it might not work at all and you might just carry on with the sleep disorder, or it might even re-set your rhythms to the wrong time of day. So it is important that you try to time the introduction of melatonin correctly.
The dosage that people tend to use varies between 0.5 milligrams and 5 milligrams. There's some very recent research which is not yet published which suggests that low doses of melatonin may be better than higher doses at resetting the clock. Furthermore, I do not recommend that you take melatonin from health food shops. Melatonin should only be taken under medical supervision. It should be prescribed by a physician. It should be taken in a controlled way. As I said before, it can shift your rhythms in the wrong direction, and there are no long-term safety data for the use of melatonin. There are side effects. Some of the side effects are sleepiness, which may be desired if you take it near bedtime, but often headaches happen, and people report nausea after taking melatonin. And there may be some groups of people who are more at risk from the side effects of melatonin, such as people with heart conditions, people who suffer from migraines, people with a family history of mental illness, pregnant or lactating women, and particularly children. I'd be happy to advise physicians in how to give melatonin, and how to time melatonin properly, but it really should be taken in a controlled way.
There are other therapies which people are trying to develop. Some people find it very easy to stay on a 24-hour day, for example, by keeping very strict schedules and very strict regimes. There may be other strategies, like timed exercise, or the time caffeine is ingested, or mealtimes are scheduled, which are also able to provide the body clock with a time cue to replace the lack of light. But these potential treatments are not yet well enough understood. We really need to do more research to ascertain whether they're capable of shifting your clocks enough to get you back onto a 24-hour day.
In the last 20 minutes I've covered about 20 years of research. I'm so sorry if I've gone too quickly but, as well as the Harvard group up in Boston, there are two other groups in the world which are doing a great deal of research in this area. The first is the University of Surrey in the UK which is where I did my original work, but there's also a laboratory in Portland, Ore., which has been doing similar work for about 20-25 years. These researchers are willing to provide information particularly to physicians to treat the types of sleep disorders I've talked about.
I'm just going to summarize with the take-home points, and the take-home points are these: Blind people have more sleep disorders than sighted people. That's absolutely true. People with no light perception have a higher incidence and a greater severity of sleep disorders than blind people with some degree of light perception. In the majority of totally blind people, these sleep disorders are due to a body clock disorder because of a lack of light perception reaching the brain. The symptoms of the so-called non-24-hour-sleep-wake disorder are cyclic sleep patterns, excessive daytime sleepiness, very extreme tiredness and lots of daytime naps in the bad phases of sleep. These body clock disorders can be treated with artificial melatonin if taken at the correct time according to one's own individual body clock.
I'd like to end by thanking Mr. Crawford and the ACB for the invitation to speak to you today. I'd be happy to talk to anybody individually by telephone or e-mail about our research program.
(You may reach Dr. Steven Lockley by phone at (617) 732- 4977, or by e-mail at [email protected].)
CAPTION
SEATTLE, October 15, 2002 -- I did not realize that getting appointed to this position meant that I would be working on three conventions at once. I have visited and remain in contact with our 2004 site in Birmingham, Ala. I have visited Pittsburgh twice and contact them even now on a weekly basis and just this past weekend I have been in communication with both the ACB Minneapolis and D.C. offices with unfinished business with regard to Houston. This is a many-faceted position and I am ever so proud to be able to serve ACB in this manner.
Well, that Houston convention was something else. From our earlier convention there in 1997, it was clear that we had grown in affiliates and events since then -- even the ballroom where the general session was held seemed smaller. So many of you were so patient when room changes needed to be made at the last minute or when the set-up you had requested was not quite right. Most of you know that for a duck to glide smoothly on the water it is paddling like crazy underneath. Well, that is my job: to make things look easy while frantically rallying the appropriate troops to get the job done.
With almost 1,100 attendees, two hotels, over 800 rooms booked, nearly 80 exhibit booths, including a talking ATM that dispensed real money, some 200 different events scheduled, numerous tours and one hilarious banquet -- who can ever forget the Weakest Blink? -- the Houston convention will go down in the history books as one of the best ACB has had.
Once again ACB streamed its general sessions to listeners around the world. Those in cyberspace were even given the opportunity to win a door prize; how do you like that? Some said that doing such streaming would make people not want to come to convention. I think streaming has done just the opposite. It has made people want to be "a part of the action." Reservations have begun to pour into Pittsburgh and show no signs of slowing down.
The best thing about the Houston convention was the manner in which the hotel staff went the extra mile to make our stay the best it could be. The staff, as they did in 1997, volunteered and was a visible presence in assisting our attendees. Their flexibility and quick response to our needs was impressive. Another bright spot was the great people I had on my team. If it were not for them, many of the aspects of convention that we all take for granted would not have happened. They, too, worked tireless hours to ensure that their domain was intact and running like a well-oiled machine.
But no ACB convention can be successful if it were not for its membership. You put together great programming, assist at the information desk, press room or the convention office, keep yourself informed and adaptable during the long week and most of all stay upbeat and united in the principle for which we all come together -- that is to stay informed on the issues, to make life better for those blind and visually impaired people who will come after us and most of all to have fun and celebrate this fine organization called the American Council of the Blind.
(Editor's Note: To reserve a room in Pittsburgh, call the Westin Convention Center Hotel at (412) 281-3700. Room rates at the Westin are $85 per night plus tax. More details will follow in future issues.)
PRESIDENT
CHRISTOPHER GRAY
94 RAMONA AVE.
SAN FRANCISCO, CA 94103
FIRST VICE PRESIDENT
STEPHEN SPEICHER
825 M ST., SUITE 216
LINCOLN, NE 68508
SECOND VICE PRESIDENT
M.J. SCHMITT
1027 DUNLOP AVE
FOREST PARK, IL 60130
SECRETARY
DONNA SELIGER
3912 SE 5TH ST
DES MOINES, IA 50315
TREASURER
ARDIS BAZYN
500 S. 3RD ST. #H
BURBANK, CA 91502
IMMEDIATE PAST PRESIDENT
Paul Edwards
20330 NE 20th Ct.
Miami, FL 33179