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 website and complete an 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.
October 15 is doubly important this year. Long celebrated by ACB members and the blindness community, worldwide, as International White Cane Safety Day, this year, October 15 also coincides with Disability Mentoring Day (DMD), a day for young people with disabilities to check out the world of work and careers by accompanying people who work at jobs they love to their work places. DMD is a partnership between the American Association of People with Disabilities (AAPD) and the U.S. Department of Labor, Office of Disability Employment Policy. We urge all our readers to honor the convergence of these two important events. Take white cane or harness in hand, and celebrate independence and involvement in the real world of work and community.
*****Since humans gazed upon the first forests and found the tall trees towering in majesty and beauty above them, we have always revered and taken a degree of comfort from their reassuring presence. Our poetry, our music and our legends are filled with allusions to the graceful giants of the woods, and in their essence lies a powerful lesson for all of us in ACB.
Just as the mighty oak grows strong and tall with its roots planted in fertile ground, so too has ACB reached skyward, stretching its branches to all from a foundation nourished by our democracy, our values and our ideals. Like the mighty oaks, so too have we become a symbol of strength and reassurance for those who seek shelter from the storms of injustice and marginalization.
Truly our founders gave of themselves when they broke the ground and with loving hands planted the seeds of what we would become. Even though they could not be with us as we turn toward the half-century of our growth, we treasure their courageous dedication to freedom and democracy and their belief in the value of every member's contribution, as we struggle to spread our roots and uplift the spirit of our community as high as our talents and dreams could go.
For whom does the tall oak stand? It is for us and all who treasure liberty and justice. It is for the most humble and for the greatest among us. For we are the organization that has emerged from those seeds planted so long ago, and our challenge is to honor our roots, to live our democracy, and to make sure that all who come to visit this tall oak are welcomed and invited to find rest in our shade, take strength from our presence and know that we are always there for them just as every person knows the tall oak trees of the forest are a place of tranquility and inspiration for all who seek them out and cherish their meaning.
*****Over the Labor Day weekend, ACB was joined at a virtual online card table by 225 enthusiastic participants in our premiere, fun-filled card party, assisted by the great folks over at AllInPlay. For the first 25 hours of the holiday weekend, ACB members and their friends sat together at several online card tables and played some of the finest poker many had enjoyed in years. No real money changes hands in this friendly game, just chips that you receive when you "walk" in the door of the ACB festival hall. There are tables for fast players as well as for those who want to take their time and enjoy a leisurely game. You can "chat" with the other players at your table, and it's a great way to get acquainted while people decide what cards to throw away or what to do next. As many as 60 people gathered at any one time, and we divided into tables of five players. To provide action coverage, ACB Radio was on hand, keeping participants and listeners updated on who was ahead and behind throughout the tournament.
Three prize winners, based on their final point tally, were awarded prizes at the end of the tournament. The grand prize, $200 at the ACB Store, went to player Gucci of Singapore. We haven't quite figured out how to manage exchange rate and shipping details from here to Singapore, but this is a wonderful example of how ACB and technology are expanding the universe of opportunities for blind people, not just in our country, but all around the world. Second and third prizes went to players kena298 of the U.S. and Tom Lorimer (Scottie) of Scotland. Both of these prizes were provided by AllInPlay (http://www.allinplay.com). Finally, and this says something very important about events such as this and about the people who participate in them, several players decided to make their own personal donations of door prizes which were awarded to other players. Several of the donors are weekly broadcasters on ACB Radio Interactive.
Any report involving me and my luck during this tournament would have sounded about as exciting and jubilant as our poor, cracked Liberty Bell. Mercifully, I did not wind up in last place, but only in 136th place and feeling lucky to be there! Fortunately, I can honestly say that for me, winning or losing wasn't as important as participating and being a player in this fun event. Without participation, you have neither the chance to win or to lose. Sometimes, it can be very frustrating to sit down and work hard on something, yet come away from the table with little or nothing to show for the work, despite putting forward the best effort possible. It's felt pretty frustrating at times these past couple of years as we in ACB have worked on issues of concern and interest to our membership. We have had to wait patiently for rehabilitation reauthorization in order to have the chance to put appropriate legislation in place to protect and strengthen the rights of those who choose to work in "non- integrated" settings. In a second round of biased and unfair rule-making, we had to watch the federal government deny significantly effective eye treatment to those who could not afford to pay for it themselves. In a third area, we stood helpless as the judiciary snatched descriptive video from our hands by narrowly interpreting one sentence of the rule which had been passed in order to pilot test and then enable this valuable program.
Despite these disappointments and setbacks, ACB neither left the table nor gave up on these and the many other positions we champion for all blind people. Despite the disdain shown by the RSA commissioner and others in that bureaucracy for the employment choices many blind people wish to make, we remain in dialogue with them while striving in Congress to promote stronger safeguards and guarantees of employment in both integrated and non-integrated settings for people who are blind. As mid-September approaches, it appears very possible that we will achieve victory in amending language of the Rehabilitation Act to promote these safeguards and we will then be well on the way to achieving our goals in this area.
Also in September, we can see great success on the horizon for protecting the rights of any person, regardless of their income, to have the benefit of Visudyne treatment for macular degeneration. We had to go to court and then testify in front of the Medicare advisory committee to get the ball rolling in the right direction, but again, we did not give up, we did not leave the table, and we did not allow federal bureaucracies to place a price on treatment to prevent blindness beyond which medical coverage would not be provided.
In the area of video description, we are also seeing new possibilities and successes. Specifically because of your work and advocacy, pressure has remained focused on cable television providers, local television stations, and satellite broadcasters to carry the described video that does exist today. Despite the unfavorable ruling of the federal courts, descriptive video continues to be produced for videotape, DVD and television broadcasts. Sen. John McCain, a longtime supporter of people with disabilities, is sponsoring a Senate bill to reinstate requirements for providing descriptive video.
These have been hard-won victories for the American Council of the Blind. Today, the victories are only partial and, as is so often the case, much work still needs to be done. You can be certain that as events and actions unfold in each of these areas and in many others as well, your organization will remain active at whatever table we are seated, to achieve what the membership has asked us to do. In essence, we are players, not watchers. We are not afraid to protect the rights of all blind people, whether some of these rights may seem "politically correct" to a minority of blind people. As an organization, we stand for the right to choose and the new-found freedom such choice engenders, as well as the responsibility it requires and the dignity that such freedom and choice imbue.
*****Recently, in an e-mail exchange on ACB's e-mail discussion list (ACB-L), I had the opportunity to outline my thoughts regarding accessible pedestrian signals (APS) and the need to support their use and installation. A number of points typically used by opponents of APS were posed to the list in the form of well-worded questions which invited list members to respond. What follows is the second attempt of this ACB member to address those issues in a Q&A format. I will state from the start that I am a strong supporter of APS, and I do not attempt in this article to find a compromise position. I can find no compelling reason to seek compromise by bartering with access, safety and the lives of people who are blind or visually impaired. Q: What are the reasons why ACB promotes policies in favor of APS? A: We promote policies in favor of APS because we promote equal access. If a community deems it important for safety to install visual signals at an intersection for sighted pedestrians, then pedestrians who are blind should have the same consideration for safety as all other members of that community. My safety is not of less importance than my neighbor's based on the fact of who can see or not. Incidentally, there is research that indicates that all pedestrians cross more quickly at intersections where APS are installed. Q: Statements have been widely circulated that blind and visually impaired people have died or been severely injured due to the lack of APS, and if so, where may one find the official statistics depicting the overwhelming circumstances where the benefits would undeniably outweigh the costs? A: This question truly offends me, but if it needs to be asked, then perhaps I should attempt to answer it. There are several web sites both private and federal which give statistics about pedestrian accidents involving people both with and without disabilities. Just use your favorite search engine and put in the words "pedestrian safety" and sit back and do some reading. You can also check out ACB's web site for the testimonies written by friends and loved ones of blind and visually impaired people who were killed or injured in such accidents.
As for statistics showing the benefits outweighing the cost, what is the number that would satisfy this request? Are we expected to put a price tag on the lives of the people who have died or to estimate the loss to society based on a reasonable projection of what they might have contributed monetarily had they been able to live out a reasonable life span, and then to balance this against the cost of installing APS? Is this how we determine the need for visual signals? I can tell you that the installation of an APS at the major intersection I cross coming home from work has seriously reduced my stress in making that crossing, but I don't know how to put a dollar amount on that, and fortunately Arlington County, Va., didn't ask. All they needed to know was that I cross that street regularly and that installing an APS would afford me the same ease and safety of travel as the existing visual signal affords all other county residents making that crossing -- in a word, accessible. Q: To what extent are the APS going to be implemented? Are we talking every intersection in America, or are we just talking major streets in major cities? A: The Access Board is proposing that where it is determined that new pedestrian signals are needed, accessible pedestrian signals shall be installed. There is no recommended template for retrofitting existing signalized intersections with APS. There are materials that give guidance on how to determine at which intersections APS would prove most useful, but mostly their installation is accomplished because a local resident in the community requests it. Such requests constitute reasonable accommodation under the Americans with Disabilities Act (ADA).
In no discussion made up of any group of reasonable people have I ever heard it proposed that every intersection should have an APS. For more information about what is actually proposed, check out the full PROWAAC report and the proposed guidelines on the Access Board's web site. (See resources at end of article.) Q: What is the projected cost to undertake the installation of APS, and which resources are tapped for the necessary funding? A: The average cost of adding APS to the installation of a new visual signal is $4,000. Let's put this in perspective. The overall cost of signalizing a four-legged intersection is around $200,000. The cost of the visual pedestrian signal is about $50,000 or 25 percent of the overall cost. To make that visual signal accessible is $4,000 or 2 percent of the overall cost. If the signal is a fixed-time signal, meaning that the walk cycle is activated by a push-button, then the cost of making it accessible is even less. Another comparison to consider is that the cost of the new countdown signals, the signals that give a visual display of the time remaining to cross the intersection, is around $43,000 and that's using existing equipment already in place at the signalized intersection, and the cost of adding voice message APS is about $12,000.
The general answer to the question about where the funding comes from is that it comes from the source that funds the visual signals. In addition, there are federal funds available to help a municipality increase the accessibility of the pedestrian environment and particularly so if modifications increase access to public transportation. Q: What has ACB done over the years to promote the use and installation of APS? A: Much has been done at the national level by ACB to promote awareness of the need for APS. Information about such activities can be found in "The Braille Forum," "News Notes from the National Office," "The Washington Connection," and in resolutions from many years past. ACB has also written the "Pedestrian Safety Handbook" which is an excellent resource document on the topic, and has created a web page with links to pertinent information on other sites. The ACB environmental access committee has been very proactive in seeking access to information which is provided visually to pedestrians, and the ACB transportation task force has recognized accessible environments including accessible intersections as a key factor in blind pedestrians' utilization of public and private transportation. Still more has been done by special-interest affiliates and state and local chapters of ACB to promote APS, and these efforts are documented in their board/business meeting minutes, resolutions and newsletters. Q: Who has worked with the ACB to change the regulations and increase awareness of this issue? A: The Association for Education and Rehabilitation of the Blind and Visually Impaired (AER), especially the division for orientation and mobility professionals, the American Foundation for the Blind (AFB), and a number of local agencies and organizations including an increasing number representing seniors and parents. Several organizations have taken a proactive position toward access to information on the streets, including The Seeing Eye and other guide dog schools. Q: Who, aside from the NFB, are its most adamant opponents, and why? A: I can't think of any group other than NFB who has openly opposed the use of APS. As for why they oppose it, I can't think of any rational answer. I think that's a very good question. Why would anyone want to make it more difficult for a person who is blind to cross an intersection? Why would anyone want to jeopardize the safety of any person who is blind by openly fighting against access? It's beyond me to answer such questions. Q: Would one go so far as to say that crossing signalized intersections without APS is impossible? A: This is similar to the question regarding should there be an APS at every intersection in America, in that it attempts to diminish the importance of the issue by posing an extreme interpretation of what's been discussed. Generally statements like this are thrown out in an attempt to make people feel ridiculous for supporting APS. Again, no one in any group I've ever heard or read about has suggested that people who are blind can't cross lighted intersections unless there is an APS. No one is suggesting that making an APS available is the only tool or skill a blind or visually impaired person needs to make a safe crossing. In the example I gave above about the intersection I cross coming home from work, I made that crossing for a year before the installation of the APS. Some days I misjudged it and had to turn around and go back to the sidewalk and try again. Some days I had to wait through a couple of cycles before feeling comfortable enough to make the crossing. Some days the light at the next intersection a block away kept traffic going in one direction so backed up that it was not possible to tell whether traffic on the parallel street was stopped because it was time to cross my intersection or just because of the backed-up traffic conditions. And some days I came very close to being hit by turning traffic from the far lane that I couldn't hear over other traffic noise. So could I cross it? Yes. Did I cross it? Yes. Can I cross it with greater ease and certainty now that the APS is available? Yes. Have I discarded all my other training regarding traveling independently just because this signal makes a noise when it's flashing the walk sign? No. Q: Assuming that blind people have been able to travel through lighted intersections up to this point, would APS not serve as a blow to the image of independence the ACB claims to uphold? A: Do I feel less independent because I just paid my bills online rather than by using the Optacon and a check-writing guide? Would I have wanted to use that web site for paying my bills if it had not been made accessible by its developers? Do I feel less independent because I needed them to make it accessible? If they refused to make it accessible, would I have still paid my bills? How is the accessibility of the online bill-paying environment different from the accessible pedestrian environments I travel through each day? Q: How has the blind population been able to largely cope without APS? A: How did we cope before any assistive technology? Years ago as a state employee I used to handle large volumes of print paperwork without a scanner or a computer, but do I want to give away my computer or scanner now? I don't think so. The intersections of my youth were plus sign structures with predictable and static control lights, and the cars were rumbling on eight loud gas- combusted cylinders. Today, many intersections are variable and dynamic, controlled via computer in accordance with real-time traffic flow. Add to this today's silent, stealthy cars, and one might reasonably wonder how anybody is expected to cross safely under such conditions. Q: The ACB's web site indicates that: "The American Council of the Blind (ACB) is a national organization of blind, visually impaired and sighted individuals whose purpose is to work toward independence, security, equality of opportunity, and improved quality of life for all blind and visually impaired people." This said, could it not be argued that by implementing truncated domes on every street corner as well as audible signals we are feeding the stereotype that blind people cannot be as competent when they travel as their sighted counterparts? A: No. And no one's advocating for detectable warnings on every street corner either. Do yellow warning strips on train platforms feed the stereotype that sighted travelers are not as competent as their blind counterparts? Q: Could it not be further asserted that taking such steps is in direct violation of the goals guaranteed by the objectives listed above? A: Not by any rational person. Q: Will the ACB negate the fact that pedestrian accidents can happen anywhere and may involve anyone? A: Certainly not. Again, this is an example of using the most extreme point of view possible to interpret what's being promoted. We're proposing that all reasonable effort be made to limit accidents, that if society considers that the presence of visual signals helps to minimize accidents for people who can see them, then it is reasonable to assume and only fair to promote the tenet that audible signals will do the same for people who can't see the visual ones, and vibrotactile ones will do the same for people who can't use the visual or audible ones. Q: If the problem of pedestrian safety is as astronomical as the ACB claims, would it not be the teaching methods of the orientation and mobility instructor which should be called into question? A: It is not the teaching methods of my O&M instructor from 28 years ago that are at issue when I'm trying to hear whether there is traffic turning from four lanes over, while the sound of idling vehicles some of which have music playing at volumes which would accommodate the fans at a rock and roll concert intrude upon my ability to hear. It's not the teaching methods of my O&M instructor that are in question when traffic flow sounds are masked by the delivery truck idling at the curb. It's not the teaching methods of my O&M instructor in question when I'm trying to judge when exactly my 11 seconds to cross at a traffic circle begin. Do we have visual signals because parents weren't good enough at teaching their children to look both ways before crossing the street?
In summary, good travel skills are crucial to everything we do and so is making our environment accessible. Many people have excellent travel skills and put them to the test every day, but I for the life of me can't understand anyone opposing the provision of basic equal access in the built environment that would create a safer travel environment for people with disabilities. What about the differences that exist between individuals? What about the fact that some people are just more timid than others? What about the fact that some people have additional disabilities other than blindness? What about the fast-growing senior population and the fact that seniors are twice as likely to be killed by an automobile as younger members of the general public? What about the fact that the real skill comes from repeated practice, which puts newly blinded people at an automatic disadvantage? What about factoring in being tired or distracted? What about factoring in loud noises? And why on Earth would anybody advocate for less than equal access?
The concept of the congenitally blind, 20-something, exquisitely trained individual, able to leap complex intersections in a single bound, is much more theoretical than real. There are very real, very average, very alive people who are blind, who will not remain so alive unless we all wake up to what all pedestrians need from their environments in order that they might traverse them safely. The technology is here. The legislation is here and the guidelines have been written and proposed. I could accept it, if not really understand it, if the NFB chooses based on their philosophy to not make environmental access one of their priorities, but that they actively advocate against it is unconscionable in my opinion!
When I walk out my front door, I don't feel the need to prove anything to anybody. I have work to do, business to transact, errands to run, and when I stand at the corner waiting to cross the street, there's no one standing in judgment of my skill at traveling independently. It's just me and all those cars. I'm not diminished at all by the fact that the signal now makes a sound that lets me know the walk sign is on. It's just one more piece of information helping me to make the best judgment I can about putting my body in front of all those cars. Similarly, it doesn't diminish my independence to use a talking alarm clock that I can set for myself, a color detector to match my socks, screen reading software to use my computer, braille to read and write, little stick-on dots to label my washing machine or sighted assistance in the store to find just the right shampoo. Can I use an elevator that doesn't give an audible signal when it passes a floor? Can I improvise a method of finding my hotel room when there is no braille signage? Can I eat in a restaurant if there is no braille menu? Is it possible for me to figure out where to get off the bus if the operator won't call the stops? It's not a giant test of how well I can pass when access doesn't exist. It's not about one-upmanship between me and the sighted world. It's about equal access. It's about upholding my civil rights as an American citizen. It's about being one nation under God, indivisible, with liberty and justice for all. Resources Pedestrian Safety Information American Council of the Blind http://www.acb.org/pedestrian/index.html Draft Guidelines for Public Rights of Way and Public Comments The U.S. Access Board http://www.access-board.gov/news/prowupdate.htm Technical Report on APS The U.S. Access Board http://www.access-board.gov/news/aps-report.htm Synthesis on APS Ped/Bike Information Center funded by the U.S. Department of Transportation http://www.walkinginfo.org/aps/home.cfm
*****At the very heart of the disability rights movement is the notion that it is society that creates disability by the barriers it places in the path of people with disabilities. A great deal has always been made of the intransigence of the country at large and of the widespread acceptance of what disability rights activists have dubbed the "medical" model. Under this rubric of disability, people so "afflicted" are perceived as inherently inferior. Their disabilities must be "fixed" or "cured" if they are to be made better. Emphasis is laid on lessening the disability and thereby making the disabled person more "normal."
It isn't my intention to spend a lot of time on this model but rather to suggest that it seriously distorts the reality in which disabled people must live. You see, I believe that it is not from doctors that the notion of people with disabilities as inherently inferior comes. I argue, perhaps controversially, that this notion comes instead from religion and that the medical model is far better understood if we take the doctors out of the middle and put religion at the center where it actually exists.
Neither doctors nor medicine have the power to explain or be held responsible for the pervasiveness of the value system that actually mediates disability attitudes. Instead, they have imbibed the same model from childhood that the rest of society has, and that model is religiously based. There is not a single instance that I know of where Jesus "empowered" a blind man or a lame woman or a deaf child. He cured them instead. I find it hard to imagine a more debilitating attitude toward disabilities than the one contained in the book of Job in the Old Testament! One "affliction" after another is piled on poor Job and he is expected to passively accept and endure but never to adjust. For Job, the isolation, pain and incompetence are all God's will and must be accepted joyfully. During a large part of the book of Job, he just sits there as a passive witness to his body's changes.
Our notion of what is "good" and what is "evil" comes directly from the values that we imbibe from earliest childhood in Sunday school. If we as disabled people are not "cured," we do not have enough faith; we haven't prayed hard enough. We are sometimes taught that disability doesn't happen in a vacuum. It is a punishment for someone's or the world's sins. Every religion demands that its adherents provide charity to those less fortunate than they and folks with disabilities certainly are that. There is an inherent recognition of the inferiority of those with disabilities and a concomitant duty on any good religious person to provide those "afflicted" people with "help."
The very word "handicapped" has nothing to do with medicine but rather comes from the practice in medieval churches of allowing the halt and the blind to stand outside churches with cap in hand. Judaism and Islam are as ability-centered as is Christianity, though Islam, far earlier than any of the other religions, identified "charity" as an absolutely central tenet of each man's responsibility. If anything, Eastern religions encourage even more passivity than do the others. The notion that, with patience and acceptance of one's karma one can gradually aspire to a higher plane, is surely as stultifying a position as one can imagine. It is possible for one's actions to influence future karma, though, and that is to the good. Unfortunately, disability is right at the bottom of the caste system along with untouchability.
Do I intentionally demean all the good that is done for people with disabilities by religious institutions or by the people who are a part of them? Of course I don't. Indeed, it is absolutely crucial to an understanding of disability history that we recognize that private philanthropy specifically encouraged by all religions was the source of the only assistance available to people with disabilities throughout most of history. The notion that the government or the society had any responsibility for assuaging the suffering of the downtrodden and disabled can be traced back, at the earliest, only to the 19th century. Without the ongoing efforts of churches, people with disabilities would be far worse off. Indeed, the contributions that ACB can glean from the larger society are probably most often given out of a value system that is explicitly and repeatedly sanctioned by cultural values that have their roots in the philosophy of whatever religious institution the giver is a part of. It is also true that people with disabilities are more accepted in churches than we are in most other areas of our society. Indeed, it is specifically because there is a place for us within the community of religion that I suggest we need to examine what that place is and what it could be.
The real point of this article is to suggest that the adoption of the "medical" model misrepresents what we are truly required to change. It is the very moral center of our society that we must impact. The disability movement may point as often as it likes to fundamentalist and right wing agitators as our public enemy; but all that does is obscure the real issue. The fact is that all organized religions, with the best intentions in this world and the next if they believe there is one, operate with an entrenched set of values that we must explicitly recognize and validate. Only then can we hope to understand just how much we have to do.
The attitudes of virtually everyone in our society toward disability, including us, are built from earliest childhood. The very bedrock of all that we are taught to believe is "good" creates a value system that reinforces the inferiority of people who are disabled and promotes charity and lower expectation as positive religious values. If we could devise a theology of disability, what would it look like? Just as important, how can we hope to change institutions that are so inherently grounded in the moral certainty that we need help and are worthy of charity?
My next article will at least explore some options that we can try. It will not be easy and, if we are honest with ourselves, it may not even be desirable. Civil rights are things that churches can understand. True equality is a horse of an entirely different color. Our quest for civil rights has already eroded the impulse to charity of many in our country. What will happen if we truly seek to disassemble the web of inferiority in which we are cocooned? Are we truly ready to stand exposed to the world without the anchor of a place in the moral hierarchy from which we reap considerable benefit? These are hard questions. Stay tuned. We have to face them or we will forfeit the chance to ever be all that we have the potential to be!
*****The Old Dominion Council of the Blind and Visually Impaired invites you to historic Fairfax City, Va. for our 2003 annual state convention October 24-26, 2003. Convention speakers include Joseph A. Bowman, Commissioner of the Virginia Department for the Blind and Vision Impaired; Ed Walker, radio announcer; and Anna Swenson, author of "Beginning with Braille," "The Braille Trail" and "The Braille Bug." There will also be a panel of students and faculty from a local resource room for the blind, a legislative panel, exhibitors and recreational activities that should guarantee a great time for all. Convention festivities will be held at the University Center Comfort Inn, 11180 Main Street, Fairfax, VA 22030. For reservations, call 1-800-223-1223. Rates are $79 plus tax per night. Visit www.acb.org/olddominion for more information.
At its fourth annual meeting on September 10, the Shenandoah Valley Chapter of the Virginia Association of the Blind designated VAB executive director Alice Malbone as the first recipient of the newly created, annual Alice Malbone Award! Special community service awards were distributed to six members, and, in addition, Richard Decker received the chapter's prestigious Nelson Malbone Award. The chapter congratulates and extends their collective gratitude to all award winners.
Oct. 3-5: ACB of Maryland, Holiday Inn, Cumberland.
Oct. 9-11: Alaska Independent Blind, West Coast International Inn, 3333 International Airport Rd., Anchorage.
Oct. 10-12: Illinois Council of the Blind, Radisson Chicago Northshore Hotel, 4500 W. Touhey Ave., Lincolnwood. For more information, call the Illinois Council office at (888) 698-1862, or via e-mail, [email protected].
Oct. 10-12: ACB of Minnesota, Doubletree Park Place, St. Louis Park. Contact Linda Oliva, [email protected], or Jim Olsen at (612) 332-3242.
Oct. 10-11: Nevada Council of the Blind, East Las Vegas Community/Senior Center, 250 N. Eastern Ave. For details, call (702) 383-0600.
Oct. 10-12: ACB of Ohio, Holiday Inn on the Lane, 328 Lane Ave., Columbus. Contact Arlene Cohen, [email protected].
Oct. 10-12: ACB of South Carolina, Best Western Charleston Airport Hotel, Charleston.
Oct. 10-12: South Dakota Association of the Blind, First Gold Hotel, Deadwood.
Oct. 16-19: California Council of the Blind, Crowne Plaza Los Angeles Airport Hotel, 5985 W. Century Blvd., Los Angeles.
Oct. 17-18: ACB of Oregon, Ramada Inn, 225 Coburg Rd., Eugene. Contact Bev Rushing at (503) 362-4151 for more information.
Oct. 17-19: ACB of New York, Inc., Crowne Plaza Downtown, Rochester. Contact John Farina at (518) 449-1581 for more information.
Oct. 24-25: Utah Council of the Blind. Contact Janis Stanger or Linda Braithwaite at (801) 685-0950.
Oct. 24-26: ACB of Maine, Holiday Inn, Waterville. Contact Carson Wood at (207) 856-7368 or via e-mail, [email protected], for more information.
Oct. 25: New Jersey Council of the Blind, Ramada Inn, 1083 Rt. 206, Bordentown. Contact Ottillie Lucas at (609) 882-2446 for more information.
Oct. 31-Nov. 2: Pennsylvania Council of the Blind, Adam's Mark Hotel, City Ave. and Monument Rd. in Philadelphia. For more information, call John Horst at 1-800-736-1410.
Nov. 6-8: Washington Council of the Blind, Downtown Doubletree Inn, Spokane. Contact Cindy Burgett at (360) 698-0827 for more information.
Nov. 14-16: Michigan Council of the Blind and Visually Impaired, Southfield Marriott, 27033 Northwestern Hwy., Southfield. Contact Joy Francis at (313) 537-7172 for more information.
Nov. 15: D.C. Council of the Blind convention. For more details, contact Oral Miller at (202) 363-8334.
*****FundFlow LLC, the Washington, D.C.-based company working with ACB's leaders and staff to develop strategic fundraising initiatives, is about to launch the ACB Affiliate Fundraising Network (AFN).
AFN is a membership-based electronic network linking affiliates to support and strengthen their fundraising programs on an individual and collective basis. The goal is to provide an accessible forum for ideas, an educational platform for best practices, a showcase for successful projects and a clearinghouse for opportunities and resources. AFN is an online workshop available to AFN members 24 hours a day, seven days a week.
The Affiliate Fundraising Survey conducted and distributed by FundFlow at February's mid-year meeting in Pittsburgh elicited participation from 86 percent of the state affiliates and 95 percent of the special-interest affiliates. When asked to identify their major challenges in implementing their fundraising programs, affiliates cited the following:
1. Lack of knowledge, experience and training in fundraising.
2. Lack of ideas.
3. Lack of resources, and
4. Lack of visibility and recognition of ACB at the state and local levels.
When asked how ACB's national office could most effectively support their current fundraising initiatives, affiliates' most frequent responses were:
1. Share information and training about fundraising in the form of accessible toolkits and other material.
2. Establish an on-line support service with how-to information that is relevant to the situation of each affiliate.
3. Create and manage a way to identify and track potential donors with a centralized database, with each affiliate's entries kept separately and confidentially.
4. Establish or support regional conferences to share fundraising knowledge, training, resources and experience, and
5. Ensure that the ACB national office complements but does not compete with any of the affiliates' current programs (such as the vehicle donation program). In other words, promote collaboration and enhance communication between the national office and the affiliates.
The Affiliate Fundraising Network offers the following benefits to its members:
1. A fundraising audit of each member, complete with six- month and 12-month recommendations
2. A monthly report of fundraising news-you-can-use, best practices, how-to feature of the month, announcements and Ask AFN Q & A's
3. Biweekly group conference calls, open to all AFN members for open discussions and about topics of interest
4. A toll-free fundraising hotline with voice mail, and
5. Preferred consulting rates from FundFlow, reduced as much as 40 percent.
Initially, AFN's reports will be available through a closed listserv on the ACB web site. A members-only toll-free telephone line will be set up as part of AFN's service, attended to by the fundraising professionals at FundFlow, as will be the biweekly conference calls open to all members.
AFN fundraising audits and other correspondence will also be generated from FundFlow's office. On request (for a nominal charge), reports and other documents can be produced in braille and floppy-disk formats.
Membership in the Affiliate Fundraising Network is for six months, renewable every six months. There is a one-time setup fee and a monthly subscription charge, both of which will be driven by the number of affiliates that choose to participate in the network. The minimum number of affiliates needed to launch AFN is 10.
Affiliates with well-established fundraising programs that are already financially strong can join AFN and choose to sponsor the AFN membership of sister affiliates as a form of fundraising mentorship. Under that circumstance, the sponsoring affiliate would join AFN and receive a "mentor discount" on the membership fees of the affiliate(s) it is sponsoring.
For further information, call FundFlow at (202) 223-3503, or contact Dodge Fielding at [email protected].
*****(Editor's Note: When I first met Harry Herzek a couple of years ago, he had just recovered from the most frightening medical crisis of his life. "No kidding," he told me, "I was really convinced, and so was everyone else, all the doctors, all the nurses, that I was going to die."
Thank God, the crisis abated, Harry survived, got on a new treatment regimen, took back his life, and became active once again in his community.
He has been thinking about writing for "The Braille Forum" for a while now. We are so glad he summoned the energy and the resolve and took keyboard in hand to send a message of realistic hope about HIV and AIDS for our readers.)
In recent months, I read two "Braille Forum" articles which were written by brave women who are survivors. One woman has survived a life-threatening cancer, and the other has fought and won a battle with addiction. I, too, have a story of survival to tell, and motivated by these women's honesty and courage, I have decided to share my own story of a struggle with HIV and AIDS.
During October 1988, my employer hosted a blood donation drive sponsored by the American Red Cross. When I discovered that employees who participated would be given two hours off, I got involved. Prior to consenting to having my blood drawn, I told the nurse about my gay lifestyle and urged her not to use my blood. A few weeks later, I received a letter from the American Red Cross, asking me to contact them about a very important matter. When I called, the Red Cross representative said that the matter couldn't be addressed over the phone, so I agreed to meet with him on my birthday, December 26, 1988.
At the meeting, I was informed that my blood had tested positive for HIV. A second blood test confirmed the result. I wasn't completely surprised.
In 1988, prior to the development of some of the protease inhibitors and other newer medication regimens, the majority of people diagnosed with full-blown HIV/AIDS weren't expected to live for very long. Once people received a positive diagnosis, there were few antiviral drugs available to fight off the opportunistic infections which attacked their weakened immune systems, and, often within just a few months, they died. At that time, there were few infectious disease specialists and other physicians engaged in research or caring for people with AIDS.
With very few viable medication options for patients, and a rapidly spreading progressive disease on the rise, the nation's health care system was in crisis. The relatively new drugs that were just beginning to be used hadn't been around long enough for people to learn about side effects or to investigate dosages, and managing side effects and symptoms was difficult at best. Today, many researchers believe that high dosages which were routinely prescribed back at the beginning of the epidemic may have actually caused toxicity and accelerated physical deterioration. To make matters worse, the whole topic of HIV and AIDS was shrouded in societal ignorance and an associated stigma against people who had the disease.
It was a scary time. Added to the circumstances of my diagnosis and poor health prognosis was my blindness. The health-care system could barely accommodate the needs and concerns of people with AIDS. Even printed information on the virus was limited, and finding someone who would respect my confidentiality was difficult. I didn't feel comfortable giving the available information about HIV to a blindness agency and asking them to braille it for me or to find someone who could read it aloud.
Sometimes chaos and crisis occurred simultaneously. As my December interview with the Red Cross representative concluded, I was asked if I would agree to share information about my blindness on a questionnaire. At that time, I thought I was probably the only visually impaired person in my city with AIDS, and I declined.
As time passed, I began to realize that I wasn't likely to experience symptoms for some time. I continued working at my job and stayed involved with the other activities of my life as normally as possible. Although things were difficult early in the AIDS epidemic, that time was also exciting. Efforts to sensitize and destigmatize the community were beginning. During the late 1980s, budget cutting and the conflicts over allocating public resources emerged. In Philadelphia where I live, non-violent actions, civil disobedience demonstrations and uprisings by AIDS activists at city council meetings were commonplace. It appeared to be one of those times where citizens and government were re-examining priorities. Lobbying for city, state and federal funds, as well as efforts to secure medical and legal protections mounted. I engaged in the struggle, almost getting arrested by Philly's finest.
Instead of ending up in jail, I became a person whom the Philadelphia media sought out when they needed quotes from an actual person infected with the virus.
Toward the end of 1989, I began a relationship that lasted until June 1994. Randy, my partner, had a full-blown case of AIDS, which resulted in his death from neurological complications. The virus attacked at his brain stem. With my own precarious health situation, and limited sight, I took care of his needs. Randy's father had become blind later in life, so Randy was someone who understood and was sensitive to the ramifications of my lack of sight. As Randy's illness progressed, so did his medication regimen, and the news about his medical condition worsened. Consoling him, caring for him, and attempting to address perplexing issues and questions about his care, and how to pay for it, intensified up to and after his death. His Medicaid benefits were frequently terminated without notice. My prior employment with the Pennsylvania Department of Public Welfare gave me some leverage as we confronted countless occasions when his medical benefits were denied. Frequent benefits terminations resulted in dangerous gaps in the continuity of his treatment and care. My attempts to contact elected officials for help or intervention were fruitless, and it wasn't easy to address these matters with family or friends.
After Randy's death, while dealing with loss and grief, I continued to try to learn as much as possible about HIV and AIDS. I became an active participant in local community advisory committee activities, hosted by area medical and social services organizations. I attended biannual conferences conducted by the American Foundation on AIDS Research. Not being well versed in technical or medical issues, I did my best to make use of the limited information about medical findings that was available to me. I found almost nothing in accessible formats, and when the American Foundation on AIDS Research was unwilling to make their materials available in alternative formats, I discontinued my involvement with the group. I found that some AIDS groups lacked any real consumer input and some actively discouraged people with HIV and AIDS from becoming involved. The result of this was that only formal agencies were acting as advocates for people living with AIDS.
Eventually, the physical and emotional stress took their toll on my mental and physical health, and in January 2001, I left my job. After three inpatient hospital stays, I finally decided to address my other physical ailments. During a meeting with an infectious disease doctor, I was encouraged to have my blood analyzed so that doctors could learn how much damage had already been done to my immune system and whether my body's defense system was strong enough to fight off opportunistic infections. The analysis showed that my viral load was extremely high, and my T-cell count very low, and I began to take an array of antiviral medications to prevent infections.
Today, I continue to request HIV/AIDS information in braille or other alternative formats. I have become a strong advocate for "language equity," which means that the medical system needs to present information in formats that are accessible by all individuals. I've had resource and service provider information brailled, and I use the New Mexico Fact Sheets to research medications and disease symptoms associated with HIV and AIDS. Unfortunately, the handouts which are distributed along with most pharmaceutical prescriptions aren't yet available in braille, and this is an important issue which I work with others to change.
I've also had to make changes to diet and lifestyle, to help manage medication side effects. During October 2002, I enrolled in the Americorps program at the Philadelphia AIDS Consortium as a volunteer team leader. I assist other Americorps volunteers by providing disability sensitivity trainings to help familiarize the workers with some of the issues and needs of people with disabilities. As a result of my work there, the Philadelphia AIDS Consortium funded my trip to Pittsburgh, so that I could attend the 2003 annual ACB convention.
Because of continued advances in medicine, and other emotional and social supports, my health has dramatically improved. I feel strong enough to jump back into life, now that I can see things from a different perspective. I've been with my present partner, who is not HIV-positive, since 1995. Our policy is to be entirely open and honest with one another, and to make every opportunity in life count.
If you have the virus, I hope by now you don't feel alone. If you're someone who knows someone with HIV or AIDS, I urge you to make sure they don't feel alone. I hope I have conveyed hope and encouragement by sharing my story. Coping with HIV and AIDS can be difficult, but I haven't given up the fight. Join me if you can.
You can contact Harry E. Herzek at the Philadelphia AIDS Consortium, 112 N. Broad Street, 11th floor, Philadelphia, PA 19103; phone (215) 988-9970.
*****There are now two talking detectors on the market that will announce the color of your clothing, food and many other items. This review describes each device and attempts to make a fair comparison of both from a totally blind person's perspective. The ColorTest 150
The ColorTest 150 is a small pocket-size device that is rectangular in shape and fits quite comfortably in the hand. On the front are two round buttons, quite distinguishable from each other because one is slightly indented. At one end is a sensor that must be firmly pressed against the item you wish to examine. The sensor will translate the data it sees into speech, which then tells you what color it has just detected. To use the ColorTest, simply press the sensor end of the device against an object, and hold down the left of the two buttons on the front of the unit for a couple of seconds.
When you release the button, the ColorTest's excellent female speech will tell you the color of that object. If you want further information such as brightness and saturation of the color, you must press the right button of the two within a few seconds of testing the object. If you don't do this quickly enough, the unit will automatically shut off, and you will need to start the procedure all over again. When determining the color of an object, it is best to lay the item down on a flat surface so that when you use the detector, its sensor is properly shielded from any light. This will give you a better chance to receive an accurate reading from the ColorTest.
The right button of the two on the ColorTest will also tell you the battery status of your unit because it comes with a rechargeable cell. Simply press the right button twice in quick succession to hear a reading of the current battery status. The charger socket is located on the left-hand side of the unit, and although the ColorTest will not be damaged by leaving it to charge indefinitely, a lengthy charging period will reduce the life of the cell.
The ColorTest 150 comes in a small pouch with print instructions that I found very easy to scan. The instructions also contain a color chart. This comprises six rows of three squares, each of which can be located with your fingers because each is separated by borders of dots. The rows of squares on the chart are divided into sections of bright, strong, and dark colors. If you place the ColorTest firmly in the middle of each square and press the left button on the unit, you can calibrate the ColorTest.
The device also acts as a light probe, a very useful way of determining whether the light has been left on, or the position of a window in the room. To use the light probe section of the device, simply press the left button and hold it down, waving the unit around at the same time. You should hear a buzzing sound which will rise in tone if it detects light, and lower in tone if there is little or none. If used carefully and with some perseverance, the light probe can detect whether your paper has type or writing on it, very useful if you drop a sheet on the floor and need to know which side is right-side-up.
This device is quite a complex beast, perhaps one reason why it is so expensive for a user of modest means. In fact, I would compare it to a scientific calculator, such are the complexities of the unit. Not only does the ColorTest have the ability to tell you the color of a garment or other object, it tries to measure the brightness, hue and saturation of the color. This might be very significant to people who have had sight, and are familiar with different shades of green, blue, purple, red etc. The device emits several types of tone, which can be determined once used frequently to indicate shades of color measured. But if you're someone who simply wants to know the color of your jumper, or whether your socks match, then the sophistication and price of this unit are frankly prohibitive. Cobolt Colour Detector
Cobolt Systems recently released its talking color detector. It is a rectangular device, and is slightly larger than the ColorTest described above. On the front of the unit is a speaker grill and battery compartment which houses a PP3 cell. If you run your fingers along the right side of the detector, you will find a switch. If this is pressed down, the unit is turned off. Slide it up one notch, and the volume of the device is at its maximum. Push the switch another notch up, and the volume decreases. By pushing the switch up again once more you can make the speech even quieter.
On the top of the unit is a removable white cap. There is an indentation at the rear of the cap where you position your fingers when gently applying pressure to pull it off the color detector. If the unit is switched on, and you remove the cap, you will hear the male voice of the unit say "white." The white cap is designed not only to protect the unit's sensor, but also to calibrate it for giving a good color reading.
To use the detector, switch on the unit and remove the white cap. Now hold the unit against the color you wish to determine. Wait for a few seconds and you should hear the voice tell you what it has seen. The detector will repeat the color it has found until you turn off the device, or find something else to examine.
It is important to stress that you must try to cover the whole of the sensor if possible when detecting colors. The sensor area is surrounded by a rubberized edge to help you line up an object with the color detector. The device comes with large print and taped instructions that are very comprehensive. It is extremely straightforward and uncomplicated to use, and does not require a knowledge of rocket science to operate.
The Cobolt Colour Detector also contains a light probe. With the cap removed and your unit switched on, simply wave the sensor in the direction of a window or light bulb, and it will give intermittent beeps to indicate that it has detected light. It will not, however, vary in pitch or intensity as you get nearer to the source of light, but stops beeping when there is no light to be seen. Comparisons
The ColorTest and Cobolt device have been designed to do the same job, but are quite different animals at achieving their goals. The ColorTest is a very sophisticated device and does need some patience to determine the color of clothing, food or liquid. The Cobolt unit is ideal for anyone who wants to get an idea of the color of something quickly and with no fuss. It is also a good deal cheaper on the pocket too, priced at 49.99 pounds (which is equivalent to about $80). I have used both devices to determine a range of colors in all shapes and sizes. The ColorTest has a smaller sensor, and lends itself better to tiny items, such as phone plugs and buttons. The Cobolt Colour Detector has a wider sensor area, and is excellent for reporting the color of clothing and larger items. The Cobolt device is also fitted with an earphone jack, a very useful addition for those who might want to attach the unit to an external speaker for increased volume output, or wish to use the separate earpiece supplied for private listening. Both products also have excellent quality English speech fitted in them.
There is clearly a market for both devices, depending on what you want to use them for. If you are technically minded and have perhaps had sight in the past, the ColorTest 150 is worth the outlay for its complicated range of features. But if you just want to find out the color of something you wish to wear, or check out a roll of wallpaper in B&Q, then the Cobolt device will suffice nicely at a fraction of the price of its rival. Contact Details
The ColorTest 150 is priced at $450 and can be purchased from a number of vendors in the United States, or from Vis- Ability DK, http://ourworld.compuserve.com/homepages/Vis_Ability/homepage.htm .
The Cobolt Colour Detector is priced at 49.99 pounds (approximately $80) and may be purchased from Cobolt Systems, www.cobolt.co.uk. Shipping to people who are blind or visually impaired is free of charge. The web site is user-friendly, and one can hear a demo of the unit's speech. Telephone: 01493- 700172.
*****Ever since the mid-'90s, the company Virtouch Ltd. has been engaged in an ongoing effort to make computer screens more accessible to people who are blind and visually impaired. At the heart of this effort is a technology which can be described as a kind of tactile mouse. This device, when moved across a flat surface, can reproduce tactile representations of graphics on finger-sized displays.
The concepts behind Virtouch are largely the brain child of one man, Dr. Roman Gouzman. A cognitive psychologist and an immigrant from the former Soviet Union to Israel, Gouzman established Virtouch Ltd. and sought out software and hardware developers and business and marketing strategists. And, equally important, he sought out the views of blind people themselves for whom the product is intended. This is not a common practice in Israel. Many blind children, a crucial target group, have spent many hours playing with the device and rendering feedback. As a blind person myself who is professionally involved in the education of blind children, I have also endeavored to assist with the product's development.
The first-generation Virtouch product, called the VTMouse, was quite a bit larger and more complex than it is today. It certainly was larger than the average mouse. It had three tactile displays on top. Each display, which was designed to have a finger placed upon it, contained 32 vibrating rods or pins. These pins were similar to those found in most current braille displays. In fact, the device could not only reproduce simulated graphics, but braille as well. Gouzman hoped that the product might evolve into a low-cost braille display. In addition, audio feedback was provided.
What could one do with it? First, it could reproduce tactile simulations of images and figures. For instance, it could reproduce images of facial expressions, human organs, graphs and charts. Second, it could reproduce geographical maps, both physical and political. Third, it could add a tactile dimension to already-available computer games which featured audio output. Fourth, the device could provide an dimension to information delivered by existing computer applications such as Microsoft Office, and especially to Internet browsing.
Unfortunately, the full potential of the original VTMouse has not been realized to date and the project had to be put on hold, because the development of a dynamic braille display was more complicated than anticipated. And while the device was less expensive than any other braille display or tactile mouse, it was still expensive enough to prohibit mass sales. Accordingly a reassessment of the product was undertaken and the concepts and design were modified.
At present, the product is called the Virtouch VTPlayer. It was launched onto the market on January 15, 2003 at the ATIA Exhibition in Orlando, Fla. As the name implies, this version is somewhat scaled down. This is true of both the concept and design. The current product looks almost exactly like the average computer mouse. It has two tactile displays on top, each consisting of 16 vibrating pins. There are four controls or buttons, two on each side. In fact, it includes all of the functions of a regular Windows mouse in addition to its unique capabilities as a tactile, immersive, multimedia device. Thus, whatever else might be said of this new mouse, it is more maneuverable than its predecessor.
At the heart of the software currently available is a series of games which I suspect will keep the children enthralled for hours upon hours, and might well get the parents hooked too. These include, but are not limited to, racing a motorcycle over an obstacle course, a shooting gallery where you have to knock off ducks and wolves of various types (but not the technician), a hide-and-seek game where you have to locate friendly and other animals in the fields, a space war game where you have to shoot down your constantly moving opponent, and a mine-sweeping game. All these games have the aforementioned verbal and audio clues, as well as tactile and graphic representations of the action. There are extensive online help files and various levels of increasing complexity and difficulty. Some of these games can be played by two players, such as by blind and sighted siblings. To me this represents a significant leveling of the playing field of which I hope to see more.
The last item I was shown was the tactile maps. These were carried over from the previous Virtouch machine. By moving the device across the map one can keep track of land masses, seas, and political boundaries. For instance, you can move up and down the east coast of the United States and identify which states have coastlines. You can move across the country and check out the size and shape of the various states. You can push one of the buttons on the mouse and get audio information about the various states, such as population and capital city. These maps have yet to be further developed so that they can also display the locations of various cities, mountains and rivers, as was the case with the previous product.
What then is the bottom line? This product is certainly much more affordable than the original VTMouse, costing much less than many common play stations on the market. A nice switch! Even individual families can buy it and not have to go without lunch.
The device is easy to install. You plug it into a USB port, install the software and away you go. The various applications and games are not difficult to learn but they are challenging enough to keep the user busy for some time, while he/she hurls various invectives at the computer. Finally, the software appears to be open-ended, which is to say that more should be coming down the pike in the months to come.
In short, schools and educational facilities serving blind kids should seriously consider purchasing the Virtouch VTPlayer. All of the games are designed from the ground up to serve a "cognitive" role. In playing them, the child gains skills, in terms of understanding spatial relationships, tactile differentiation, a sense of relative direction, comprehension of braille symbols, developing a mental "picture" of complexity and so on.
If you are a parent (or grandparent) of a blind child and the child is nagging you to get a computer game or play station, this is it.
The company management tells me that in addition to the current child-oriented focus, plans are in the works to develop the VTPlayer as a platform for a whole variety of applications, such as software for the reproduction of mathematical equations, graphs, software programming, modeling language skills, and much more.
It would appear that adults and blind professionals should keep informed. For more information, to find a local distributor, or to purchase the VTPlayer directly from the manufacturer, visit www.virtouch.com. The device sells for $695.
*****On April 10-11, I was privileged to represent ACB at a symposium entitled "Students with Disabilities: Nursing Education and Practice." It was planned and sponsored by Rush University College of Nursing in Chicago.
This day-and-a-half seminar was attended by a genuinely august body, including professionals from the nursing community as well as people with whom we are far more familiar from the disabled community: for example, Andy Imparato, president and chief executive officer, American Association of People with Disabilities; Robert Silverstein, Director, Center for Study and Advancement of Disability Policy; Karen Wolffe and her assistant from the American Foundation for the Blind's Careers and Technology Center; Marca Bristow, president and chief executive officer of Access Living; David K. Hanson, Commissioner, Mayor's Office for People with Disabilities; and our own Illinois Council of the Blind president, Ray Campbell.
A personal high point of the conference for me was the panel of nursing students and graduates with disabilities whose presentation followed the keynote address by Marca Bristow. It was inspiring to listen to the real-life stories of nursing students who refuse to let their disabilities get in the way of their passion for succeeding in the health care profession. Two members of the nursing student panel have completed their education and are employed; one is obtaining her Ph.D., and another has graduated from Loyola University and is seeking employment. The theme that emerged from the panel presentation and which remained prevalent throughout the conference was that nursing involves much more than just direct patient care. In instances where a nurse is required to provide direct care, sharing responsibilities with other nursing professionals and making use of state-of-the-art technology can allow a nurse with a disability to provide the same standard of care as his or her peers. The panel presentations were nothing short of terrific, and their enthusiasm was contagious.
Other conference presentations on pertinent subjects included legal accommodations, educational curricula, employment and regulations, licensure and policy.
On Friday morning, we rolled up our collective sleeves and divided into three break-out groups, as follows: employment, education and regulations, and licensure and policy. I participated in the employment group's discussions, and I understand that group no. 3, which dealt with many important issues concerning certification and policy, held by far the most animated discussions.
During the conference wrap-up, the overall consensus seemed to be that this topic was one whose time has finally come. The underlying concern expressed by virtually every participant was for safety, not only for patients, but also for nurses and medical professionals as well. Many expressed the hope that some group will find a way to continue formal discussions of the issues which the conference had raised. It just wasn't possible to explore some of the topics which had been raised with the kind of depth that all of the participants wished.
It's just about time that I told you about my friend Karen McCulloh, a Chicago-based registered nurse whose disability was discovered 30 years ago and who has been visually impaired for the past 15 years. When Karen was unable to obtain employment or to receive cooperation from her professional peers, she started her own business because she was determined to work in her chosen field. Since 1990, she has worked in the area of professional development and implementation for state and non-profit organizations, providing in-service educational seminars for departments of nursing, among other clients.
During the evening of April 10, the National Organization of Nurses with Disabilities was formed, with Karen as its president. At this point, the organization is still in its infancy and not yet ready to accept applications for membership, but it soon will be. Its executive committee is comprised totally of nurses with disabilities, and the remainder of its board is made up of outstanding personnel both from the medical and disability communities.
If you are a nurse, or if you are interested in entering that profession, you should know that this association is interested in getting to know you. You can contact Karen McCulloh either by phone, (847) 583-8569, or via e-mail, [email protected].
In summary, I came away from the conference with a feeling of guarded optimism about the future for nurses with disabilities. While there were certainly some nay-sayers among conference participants, including those responsible for certification and licensure standards, at least they were there, I trust, to learn and, despite their quiet skepticism, they were exposed to the tremendous enthusiasm and hope supported by facts which came out of this conference. Will there be enough interest to hold future conferences? I, and so many others, certainly hope so.
*****(Editor's Note: Thank you to Donna Seliger and Winifred Downing for sharing this tribute to a man many in ACB know of, John Taylor of Des Moines, Iowa.)
Hand in hand we walk, talking about everything along the way, people we know, what we have been doing, and how we feel about all of it. We have taken many journeys like this, my Papa and I, sometimes with a mission, like to get an ice cream cone or to visit the shore of a lake. Other times, we just walk to be together. From the time I was very little, I would look up at him and think, "He is so strong and brave, he can go anywhere." Papa is my hero.
Papa is my mother's father, but when I started talking, I couldn't say Grandpa. It always came out Papa. After awhile, everybody just gave up, and he became Papa, even after I learned to speak properly. As soon as I could walk, Papa would take my hand and we would go places. He would ask me to describe what I saw and what I thought. He listened and never rushed me. With Papa's hand in mine, I felt safe and loved.
Papa has led an interesting life. He grew up on a farm in Tennessee, and tells funny stories about it, like the horse they had that they put a ladder against to get on, and even put a rocking chair on his back. He can recite poetry that he learned years ago in school. He has traveled all over and met many fascinating people along the way. He makes friends wherever he goes, and has always been willing to lend a hand where needed.
Papa has had many jobs, including working in a factory, being a teacher, working as a lobbyist in Washington, D.C. and heading a state government agency. He has been the guest speaker at everything from local Boy Scout meetings to national conventions. He serves on boards, scholarship committees, and is active in community service. Despite his busy schedule, he has always made time for me.
My Papa knows so much about so many different subjects that he is never boring to talk to. He can fix just about anything. He has rewired his house, grown a garden, built furniture, done plumbing and changed the oil in his car. He has been to almost every state, as well to other countries, and he can tell about the history of all of them. His friends call him for advice on all kinds of issues. Walking and talking with Papa, I have learned more than I can even begin to tell.
There are people that might be thinking that some of these accomplishments aren't really that big of a deal. Maybe for some people they aren't. But many years ago, my Papa began a journey full of struggles, where a simple walk on his own was a challenge. Before he went to college, got married, had kids and did most of the things I already mentioned, Papa lost all of his sight. He has been totally blind for most of his life.
Knowing that he is blind, most people would say he is a hero. A champion for people with disabilities, a shining example of how one can overcome barriers in life, a person who takes what life throws at him and makes good of it, he is a man to be admired. Papa walks proud and brave into every situation, with a strength most people are never challenged to show.
A hero is defined as a man distinguished for valor, fortitude, or bold enterprise; anyone regarded as having displayed great courage or exceptionally noble or manly qualities, or who has done a deed or deeds showing him to possess such qualities. I believe that Papa has done what it takes to be considered a hero. I think that there are many people who know him that would agree. All my life, I have been told how truly amazing my grandfather is. But, in truth, that is not what makes him my hero. For me, he is my Papa, a person who loves me totally and unconditionally. He is someone who consistently encourages me, who is never disappointed or mad at me, who is unfailingly interested in what I say and do. Papa knows how to make me feel like I am the most important person in the world. For those reasons, he is my personal hero. He may be a hero to other people for different reasons, but to me it is just a matter of his always being there for me.
My Papa has recently begun another journey, a walk where I can only take his hand for part of the way. Papa has been diagnosed with acute myelogenous leukemia. The doctors say there is nothing they can do. This time, when he goes away, he won't come back. It is no surprise to anyone that he has shown the same courage now as he has so many times before in his life. I can only look at him and think, "He is so strong and brave, he can go anywhere." Papa is, and will always be, my hero.
*****The contents of this column are a reflection of the letters we had received at the time of publication, September 15, 2003, and reflect all of the mail we received this month. "The Braille Forum" is not responsible for the opinions expressed herein. Opinions expressed are those of the authors, not those of the American Council of the Blind, its staff or elected officials. The editorial staff reserves the right to edit letters for clarity, style and space available. We can print your letters only if you sign your name and give us your address.
Regarding Ken Lovern's Article in June "Braille Forum"
I would like to comment on the article written by Ken Lovern entitled "My Computer: An Appreciation from a Guy with Bad Vision," which appeared in the June "Braille Forum." The article was well-written, and it captured feelings which many of us share.
I got my first personal computer as a high-school graduation gift several years ago. That computer was a Pentium, running DOS. I could type documents on it using WordPerfect 5.1, and I could have them read aloud to me. I could edit what I wrote; if I found a mistake I could correct it on the spot. The only drawback to that computer was that it did not have online access. My parents wanted me to upgrade to Windows, so my father took that computer to a recycling facility.
Then my parents contacted a place here in the Chicago area that sells and distributes hardware and software to people with disabilities. They ordered me a brand-new Gateway equipped with JAWS. The computer was delivered to my house, and a representative even set it up for me. Then somebody else from the company started training me on the Gateway. It wasn't long before I could prepare and edit documents in Microsoft Word.
There were several delays in getting me online, but my Internet access problems were solved when an instructor from the Hadley School for the Blind came to my home and showed me how to access the internet with JAWS for Windows. Now I am happily surfing the world wide web, and I get reliable output from the Eloquence speech synthesizer. I have thought about getting a braille display in addition to my screen reader, but that costs money which I don't have right now.
I think computers are cool, especially today because assistive technology for people who are blind and disabled has advanced so much. Some day I would like to take a tour of Bill Gates' house.
The announcement of products and services in this column is not an endorsement by the American Council of the Blind, its staff, or elected officials. Products and services are listed free of charge for the benefit of our readers. "The Braille Forum" cannot be held responsible for the reliability of products and services mentioned. To submit items for this column, you may e-mail Sarah Blake at [email protected], or call ACB at 1- 800-424-8666 and leave a message in mailbox 26. Please remember that postal regulations prohibit us from including advertisements, and that we need information two months ahead of actual publication dates.
I am very pleased to have the opportunity to edit this column. I have been active in the ACB since 1992 and have served as editor for both the National Alliance of Blind Students and the National Association of Blind Teachers. I am self-employed as a freelance writer and am delighted to find a way to use my skills to benefit the ACB and its members once again.
The Rehabilitation Engineering Research Center (RERC) on Workplace Accommodations is researching the technology needs of people with visual impairments. To ensure people who are blind or visually impaired are well represented in the survey population, join our consumer advisory network by signing up on our web site, http://www.workrerc.org/Contact/advisorylist.cfm. The survey will be sent to all those signed up for the network. Our first survey will ask about problems which people with disabilities have encountered finding and maintaining employment and about barriers they may have encountered. Interviews to gather more details about specific problems are also being planned.
If you have difficulty filling out the form on the web site, send an e-mail message to [email protected] to request a text copy.
The International Council on English Braille (ICEB) is accepting papers for the Third General Assembly, to be held from March 29 to April 2, 2004 in Toronto, Canada. Your paper must be related to the Unified English Braille Code Research Project (UEBC) or relevant ICEB work. All papers intended for presentation at the 2004 conference must be received by November 15, 2003. Send them to: Darleen Bogart, CNIB Library for the Blind, 1929 Bayview Avenue, Toronto, Ontario Canada M4G 3E8; phone (416) 480-7530 (work), fax (416) 480-7700, e-mail [email protected]. Include your name, address, telephone and e-mail address with each paper you submit.
For further information on the conference, or to discuss specific guidelines for papers, contact: Raeleen Smith, Secretary, ICEB, Royal New Zealand Foundation of the Blind, PO Box 2237, South Dunedin, New Zealand; phone 6434664244; fax: 6434554319; e-mail [email protected].
The 2004 International VSA Arts Festival to be held June 9 through 12, 2004 will be unlike any other festival! VSA Arts will have a presence in some of Washington, D.C.'s premiere and exciting locations. Opening ceremonies will be held in the Concert Hall of the John F. Kennedy Center for the Performing Arts, which has the capacity to seat an audience of over 2,000. Union Station, a historical landmark visited by over 70,000 people daily, will exhibit and stage some of our finest visual artists and performers. The Smithsonian Institution, one of the nation's most significant art venues, will host some of our master artist workshops and demonstrations. In addition, The Millennium Arts Center, Washington, D.C.'s seven-wing, 150,000 square foot facility, has committed to exhibiting our artwork, particularly installation art.
VSA Arts is currently conducting an open call to artists (literary, media, performing, and visual) to participate in the festival. You can download, complete, and submit the application form at the web site, http://www.vsartsfestival.org/.
Many ACB members will remember Connie Weadon, a visually impaired cook and teacher who wrote for "Dialogue." Blindskills, Inc., in partnership with the Washington Council of the Blind, has released a cookbook called "Connie's Kitchen: A Compilation of Recipes and Tips from the Pages of Dialogue." Recipes range from healthful main and side dishes to rich desserts; there are even recipes for use in the microwave oven. The book is available in braille and large print for $20 per copy. Call (800) 860-4224 to order. MasterCard and Visa are accepted.
Members of the American Association of People with Disabilities (AAPD) can join the Digital Federal Credit Union (DCU) to take advantage of access loans, which are now available for any product, device, or building modification designed to assist someone with a disability. Borrow from $1,500 to $25,000 or more for up to 72 months with no down payment required. The borrower need not be the beneficiary of the purchase. Qualified purchases include, but are not limited to: assistive technology, durable medical equipment, housing modifications, and rehabilitative equipment. DCU offers convenient repayment methods, including electronically, at a DCU ATM, at any DCU branch, or by mail with a loan payment coupon. If you direct deposit your net pay, Social Security, or pension into your DCU checking account and make electronic payments for the full term of your loan, your interest rate will be one-half percent below that for other payment methods. Rates are also based on your personal credit history.
There is no fee to join the credit union; all you have to do is open a savings or checking account for as little as $5. If you are already an AAPD member, or if you would like to join AAPD and DCU at the same time, you can call DCU directly for further information and an application at (800) 328-8797 (800-395-5146 TTY). Or visit DCU's web site at www.dcu.org.
The Hadley School for the Blind's course, "Access Technology: Beginnings," can provide the information to decide which hardware, software and access technology best meet your requirements. Anyone interested in helping a visually impaired family member, client or student select a computer system would also benefit from enrolling. This tuition-free distance education course enables you to learn at your own pace in the comfort of your home.
The four lessons in this course enable you to select a personal computer (PC) that meets your needs. After presenting a brief history of computers, the course describes the components of a typical PC system. It not only explains how computers are used today, but also how visually impaired people access computers. Steps for selecting a PC and appropriate access technology are listed, and alternatives for financing the purchase are suggested. A Technology List includes companies and organizations that provide computer equipment and services to people who are visually impaired.
To enroll, call Student Services at (800) 526-9909 or visit us on the web at www.hadleyschool.org.
The AT Connection is a new web-based forum where users of assistive technology can confidentially post product reviews and exchange information about their experiences with assistive technology products. There is no cost or commitment for use of this resource. Visit www.techconnections.org/forum.cfm. Call the AT Network information and referral hotline at 1-800-390-2699, Monday through Friday between 8:30 a.m. and 5 p.m., for assistance with finding the products that meet your needs.
Mobile Accessibility software makes your cell phone talk. With Mobile Accessibility you can create and edit your contact list; create, edit, send and read text messages; use audible caller ID; and much more. Contact Tom Rash via e-mail at [email protected] for more information.
WB-View, NLS's new Web-Braille viewer, a software program designed specifically to read electronic braille books on the PC, is now available. The program allows users to flip through the pages of a book by braille page. Additional features include: automatic return to the last line read when a volume is reopened; support for up to 10 bookmarks to be saved when a volume is closed; the ability to open all volumes of a book by opening any one of its volumes; a unique autoread function that allows a user to set the speed at which the braille display will advance, depending on the length of the line; automatic launch of WB-View in association with .brf and .brl Windows files; and support for find and find again commands, which will leave the braille display ready for reading at the found position. WB-View also provides a similar reading experience with plain text files.
WB-View's development was funded by the National Library Service for the Blind and Physically Handicapped to facilitate access to its own electronic braille book collection, known as WebBraille. WB-View, which is designed to work with all popular screen readers and refreshable braille displays, sells for $69. To order, contact Computers & Assistive Technologies, Inc. at (772) 546-8950 or (772) 546-2473 Monday through Friday, 9 a.m. to 6 p.m. Eastern time; or send e-mail to [email protected].
Recording for the Blind & Dyslexic has gone digital! Last September, we launched RFB&D's Audio Plus (TM) digitally recorded textbooks on CD. A single RFB&D's AudioPlus CD (developed adhering to DAISY format standards) holds the equivalent of 10 to12 four-track cassettes! Call RFB&D to learn about our special offers for existing members. If you haven't borrowed a book since you were a student, call our toll-free number below and ask about renewal options.
To see which books in RFB&D's extensive library are currently available on CD, visit www.rfbd.org/catalog and look for book titles with the designation AD or DT. Or, call toll- free, (800) 221-4792, from 8:30 a.m. to 4:45 p.m. Eastern.
Book Port (TM) is a flexible book reading device that consists of a small, portable unit with a keypad and earbuds, plus accompanying software. It features both text-to-speech capabilities for electronic text or braille format files and digital audio support for electronic audio books. The unit contains a universal serial bus (USB) connector and a CompactFlash card slot for removable mass storage. The device works only with computers with a Windows 2000 or later operating system. Book Port also acts as a recorder, letting you take audio notes on the material you read.
The included software and cable lets you use your PC to transfer material to Book Port. You can then disconnect Book Port and take it anywhere you go. The Book Port is available from the American Printing House for the Blind for $395. To order, call 1- 800-223-1839.
Planning for Elders publishes a monthly newsletter, Long Term Care News and Views, available at www.planningforelders.org in PDF or text format or by mail. Topics include funding and legislative issues, programs, features about items of interest to people with disabilities, and more.
T-shirts and sweatshirts now available starting at $16.95 plus shipping. Slogans include: "I See With My Heart," "I Don't Miss the Ugly Stuff," "Long Time No See," and "Hound Sight is 20/20." Visit Blind-Novel-Tees online at www.bntonline.com.
The Pennsylvania College of Optometry, Department of Graduate Studies in Vision Impairment, is seeking people who are blind or visually impaired and interested in receiving a master's degree or certification in education of children and youth with visual and multiple impairments, rehabilitation teaching, orientation and mobility, or low vision rehabilitation. The programs encompass a mixture of classroom, laboratory, clinical, research and field-based learning geared toward meeting professional preparation needs in the field of vision impairment. Rolling admissions and scholarships are available. For more information, contact Sharon Jackson at (215) 780-1363 or [email protected]. You may also visit www.pco.edu and select "academic programs."
"Eazy" Braille Transcription Service is offering new prices. Non-bound documents are transcribed from print to braille, or from braille to print, in English or Spanish. Most projects take between one and three hours. The cost is $8 per hour at a minimum of one hour. Contact Meagan Green, P.O. Box 18696, Salem, OR 97305, by phone at (503) 581-3948, or by e-mail at [email protected].
The 2004 Ann Morris Enterprises product catalog is now available in large print or four-track cassette free of charge. Braille costs $12. Downloads are available from www.annmorris.com or at [email protected]. New items include a talking TV remote, talking sign, light gathering magnifier, two color identifiers, and much more. Contact us at 551 Hosner Mountain Rd., Stormville, NY 12582 or call 1-800-454-3175.
For information about our braille cards in English, French, German, Spanish, Dutch, Portuguese, Italian, Norwegian, and Japanese (coming soon), visit the web site at www.shadowsinthedark.com. Or write to Shadows in the Dark, 4600 Pine Hill Rd., Shreveport, LA 71107-2716. Call (318) 459-1256 or send e-mail to [email protected].
*****FOR SALE: Braille 'n Speak 2000. Includes disk drive, all cables and manuals. Asking $1,300 or best offer. Contact Priscilla McCree at (503) 257-7498.
FOR SALE: Thermoform unit, set up to emboss two 8.5 x 11 sheets simultaneously. Hardly used; has been in storage. Includes 37 boxes of thermoform paper, 500 sheets to a box, which sell for $39 a box. Total value of the machine and paper is $3,338. Asking $2,500. Please contact Nancy at [email protected]. Shipping is negotiable.
FOR SALE: Type 'n Speak. Asking $700. Contact Bob Clayton at (319) 277-8290 or via mail (cassette or braille) 715 W. 11th St., Cedar Falls, IA 50613.
FOR SALE: Type 'n Speak. Asking $750. Serious inquiries only. Contact Paul Anderson, 220 E. Vinita Rd., Nowata, OK 74048; phone (918) 273-9173 after 6 p.m. Central.
FOR SALE: IBM Thinkpad with 64 MB RAM, Windows 98 first edition, Open Book. Asking $2,500. Contact Roger Acuna at (925) 969-9744 or e-mail [email protected].
FOR SALE: Brand-new Voice Note QT. This unit was won last July at our national convention and I would rather see it in the hands of someone who really wants and needs it. I would like to get about $1,300, but make an offer. Contact Frank Cuta at (509) 967-2658 or e-mail [email protected].
FOR SALE: IBM electronic braille typewriter. Especially good for those who do not know braille and want to communicate with braille users. The machine has normal key settings like a regular typewriter but produces materials in braille. Recently refurbished, $300 or best offer. For more information contact (Mr.) Vileen Shah at (847) 647-6677 after 6 p.m. and anytime during weekends or preferably via e-mail at [email protected].
FOR SALE: Alva satellite 40-cell braille display. This display is in very good condition. Includes power cable, USB cable, and serial cable as well as a carrying case. This unit can run on either AC power or rechargeable batteries. Asking $2,995. If interested, please e-mail: [email protected] or call Mike at (415) 474-7006.
FOR SALE: Smart View Magnifier by Pulse Data. Purchased for more than $3,000; will sell for $1,000 (negotiable). Call (912) 897-9778 anytime.
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