The Braille Monitor
39, No. 3
Barbara Pierce, Editor
Published in inkprint, in Braille, and on cassette by
The National Federation of the Blind
Marc Maurer, President
1800 Johnson Street
Baltimore, Maryland 21230
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THE NATIONAL FEDERATION
OF THE BLIND IS
NOT AN ORGANIZATION
SPEAKING FOR THE BLIND--IT IS THE BLIND SPEAKING FOR THEMSELVES
Vol. 39, No. 3 March 1996
NURSING HOME ADMINISTRATOR SLAMMED BY NORTH CAROLINA
by Barbara Pierce
WHEELS AND WHITE CANES TIPS FOR HELPING BLIND WHEELCHAIR
by Maureen Pranghofer
THE 1996 WASHINGTON SEMINAR:
BLIND CITIZENS MAKE THEIR VIEWS KNOWN
FOOD AND DRUG ADMINISTRATION HOSTS
MEETING ABOUT INSULIN-VIAL DESIGN
by Ed Bryant
TED HART: HUNTER AND LEADER
by Kenneth Jernigan
CONFIDENCE AND THE CAPRINE EXPERIENCE
by Stephanie Pieck
by John Earl Cheadle
STANDING ON THE SHOULDERS OF GIANTS
by Maria Morais
THE MIND'S EYE CAPTURES WHAT THESE FANS DON'T SEE
by Jim Klobuchar
THE BIG MOMENT OF DECISION
by Angela Howard
MY SURE, STEADY CLIMB TOWARD SELF-CONFIDENCE
by Patrick A. Barrett
WHAT DO YOU THINK YOU ARE DOING?
by Barbara Pierce
NFB CONVENTION TOURS, ANAHEIM 1996
by Jim Willows
Copyright 1996 National Federation of the Blind
#1-The picture shows the west front of the U.S. Capitol. CAPTION: The U.S. Capitol is perhaps the most famous symbol of the political process in the United States. On January 29, 30, and 31, 1996, hundreds of blind Americans hiked up and down Capitol Hill, in and out of Congressional offices, meeting with Senators and Representatives to talk about issues affecting the lives of students and adults who happen to be blind.
#2-Two women using canes walk down a hall. A state flag is visible on the left, and a U.S. flag can be seen on the right. CAPTION: Sheila Koenig (left) and Bonnie Peterson (right), President of the NFB of Wisconsin, walk through the corridors of the Rayburn House Office Building on their way to an appointment.
#3-The picture is of the three doors to a large office building. On the steps leading up to the doors are two people, one using a guide dog. CAPTION: These Federationists are getting ready to enter the Rayburn Building as part of the NFB's 1996 Washington Seminar.
#4-A group of six people, three adults and three children, are shown outside the Holiday Inn, Capitol. All three adults and the two older children are holding canes. Four-year-old Maria is sighted. CAPTION: A group of Federationists stand outside the Holiday Inn, apitol, headquarters hotel of the 1996 Washington Seminar, conducted by the National Federation of the Blind. From left to right they are Tomas Cindron (Puerto Rico), Tom Ley (Maryland), Eileen Rivera and Maria Rivera Foreman (Maryland), Courtney Osolinski (New Jersey), and Claire Westlund (New Jersey).]
NURSING HOME ADMINISTRATOR SLAMMED BY NORTH CAROLINA COMPANY
by Barbara Pierce
In some ways Barbara Kreisberg's story is far from unusual. Eighteen months ago she began losing her sight. She continued to do a superior job as the administrator of a one-hundred-patient nursing home. In fact, three months after her trouble began she actually received a substantial cash bonus from her employer in recognition of the quality of her work. Then her superiors learned about her decreasing visual acuity and abruptly forced her out of her job. As one of their attorneys said in his opening statement during a mandatory mediation session on November 14, 1995: "Even though you blind people can do a lot of jobs, nursing home administrator is not one of them."
The U.S. Department of State told Rami Rabby the same thing before the Congress of the United States forced it to begin hiring blind foreign service officers. Public school administrators used to say it to blind teacher applicants, and some still do. Those who hire factory workers all too often still say it to blind machinists and production line workers. In short, the not-in-my-back-yard argument for keeping the unwanted out (in this case a blind administrator in the nursing home industry) has reared its head again in a particularly arrogant and condescending guise.
The case is far from settled, and there is unfortunately no guarantee that it will be resolved in a way that will give a talented and able blind woman the chance to prove herself. Some people would like to pretend that five and a half years after passage of the Americans with Disabilities Act the U.S. is now the promised land for the disabled. But the ADA does not--and perhaps never will--provide true job protection. At best it offers a larger field on which to conduct the battle for justice. And the Kreisberg case is just one more nasty little skirmish in the battle for equal access to jobs and first-class status for blind people. But also hanging in the balance is the future career of a talented and dedicated medical administrator. Barbara Kreisberg began her professional career as a registered nurse. Later she earned a master's degree in health care administration. In recent years she has held high-level administrative positions in hospitals in Baltimore; Washington, D.C.; and North Carolina. On May 10, 1994, she was hired to administer the Britthaven, Inc., nursing home facility in Wilson, North Carolina. Britthaven operates about fifty nursing homes in North Carolina and Kentucky. According to Ms. Kreisberg, the one in Wilson had 115 employees and more than a hundred residents when she took over.
Kreisberg had been a diabetic for many years when, in the late summer of 1994, she began losing sight because of diabetic retinopathy. As the weeks passed and her vision continued to deteriorate, she recognized that she would have to do something to enable her to do the necessary reading for her job. She consulted the North Carolina vocational rehabilitation agency serving the blind for advice. She then purchased a closed circuit television system (CCTV) and hired a reader. These two accommodations allowed her to do her job completely.
Kreisberg did not mention her medical situation to her regional manager at this time. She says that the Wilson facility had been in turmoil at the time she was hired, and she had her hands full sorting things out during her first few months on the job. It is clear from the hand-written comments in her personnel file that Britthaven officials had been impressed with her credentials when she arrived. Based on the substantial cash bonus she received in November, they continued to be satisfied with her performance after she assumed the reins. There is certainly no evidence that they noticed any diminution in her administrative skills as she began to lose her sight.
In November Kreisberg's physicians recommended that she plan to have laser surgery on her eyes in late December. This would require a few days for recuperation, so Kreisberg was faced with the necessity of filling out medical leave forms for the time she was requesting to be away from her desk. This was the way Britthaven officials learned of her decreasing visual acuity. In late November her regional manager visited her and told her that she could not use a live reader because allowing that person to read charts and records would be a breach of patient confidentiality. On December 10 the regional manager returned to the facility, bringing along other Britthaven officials. According to Kreisberg, they repeated the prohibition against the reader and also said that she could not use the CCTV either, though no clear reason was given for this rule. They then told her that she was being placed on involuntary and indefinite medical leave. Kreisberg says that she tried to explain the ways in which she used the accommodations to complete her duties, but the officials were not interested in information. Instead, they packed up her possessions and escorted her from her office and off the premises.
Kreisberg continued to try to reason with Britthaven officials. Following her surgery she had lunch with Gini Bowling, her regional manager. Bowling asked how her sight was now that she had had the surgery. Kreisberg replied that she was legally blind and that she would require reasonable accommodations such as the reader and CCTV in order to do her job. She then asked when she could return to work from her medical leave. Bowling's reply was that, as soon as her visual acuity was what it had been at the time of her hiring, she could return to work.
It was about this time that Barbara Kreisberg realized that reasoned argument and her demonstrated competence as an administrator were not enough to resolve the situation. She needed help in dealing with Britthaven. She contacted the National Federation of the Blind. Scott LaBarre, an attorney and active member of the National Federation of the Blind of Colorado, was asked to do what he could to get Kreisberg's job back. So in early January of 1995 he contacted Glen Potter, Senior Vice President for Human Resources at Britthaven's headquarters. LaBarre says he kept the conversation low key. He assured Mr. Potter that this problem did not need to become a legal matter. He described the many resources that the Federation could make available to Britthaven and Kreisberg in resolving their differences. According to LaBarre, Potter seemed interested in what he was saying. LaBarre then took the standard ethical step in such matters of pointing out to Potter that the company's lawyers could certainly be brought into these conversations.
About two hours after this conversation, Margie T. Case of the North Carolina law firm of Maupin, Taylor, Ellies, and Adams contacted LaBarre. According to him, she made a number of threats, including accusing him of a breach of legal ethics because he had spoken directly with her client. LaBarre says he responded that he had no interest in such sparring; he wanted to determine whether they could resolve their differences and get Kreisberg back to work.
Case apparently had no interest in learning that blind people can administer medical facilities, that reasonable accommodations can and should be made in such situations, and that the NFB has many resources available to assist employers. Instead she wanted access to Kreisberg's medical records and permission to contact her ophthalmologists. Since at the time Britthaven was still paying Ms. Kreisberg's salary even though she was not permitted to do her job, LaBarre was inclined to be flexible in the hope that good-faith negotiations could begin.
Britthaven immediately wrote to Kreisberg's doctors, asking questions about her ability to perform the duties of a nursing home administrator. This letter was written by Glenn Potter and summarized the skills an administrator should have. Here in relevant part is the letter:
Kinston, North Carolina
January 11, 1995
Dear Dr. Jaffe:
...referring to the attached job description for Ms. Kreisberg's position as Administrator of the facility:
3. Specific requirements
a. Must be able to read, write, and speak the English language.
b. Possess the ability to make independent decisions when circumstances warrant such action.
c. Possess the ability to deal tactfully with personnel, residents, family members, visitors, government agencies/personnel, and the general public.
d. Be a minimum of twenty-one years of age and of good moral character.
e. Must fulfill licensure requirements of this State.
f. Knowledgeable of nursing and medical practices and procedures, as well as laws, regulations, and guidelines pertaining to hospital and nursing home operation.
g. Ability to work harmoniously with and supervise professional and non-professional personnel.
h. Ability to plan, organize, develop, implement, and interpret the programs, goals, objectives, policies, and procedures, etc., that are necessary for providing quality resident care and maintaining a sound operation.
4. Physical Requirements
a. Must be able to move frequently throughout the work day.
b. Must be able to speak the English language in an understandable manner.
c. Must be able to cope with the mental and emotional stress of the position.
d. Must function independently, have flexibility, personal integrity, and the ability to work effectively with residents, personnel, and support agencies.
e. Must be in good general health and demonstrate emotional stability.
f. Must be able to relate to and work with ill, disabled, elderly, emotionally upset, and at times hostile people within the facility.
Very truly yours,
Glenn W. Potter
Vice President, Human Resources
Also enclosed with this letter was a copy of the thirteen-page job description for nursing home administrator. Here is an excerpt taken from the Britthaven Administrative Policy Manual, April 1, 1994:
1. Establish and direct the implementation of written policies and procedures that reflect the goals and objectives of the facility. (Includes personnel policies, resident care policies, procedure manuals, job descriptions, etc.)
2. Assist in the development and implementation of departmental policies and procedures and establish a rapport in and between departments so that each can see the importance of team work.
3. Assure that all personnel, residents, visitors, and the general public follow established policies and procedures.
4. Interpret the facility's policies and procedures to personnel, residents, family members, visitors, etc., as may become necessary.
5. Review policies and procedures periodically, at least annually, and make changes as necessary to assure compliance with current regulations are being continually maintained. [This is the exact text as it appears in the manual.]
6. Ensure that residents' rights to fair and equitable treatment; self-determination; individuality; privacy; and property and civil rights, including the right to make complaints, are well established and maintained at all times.
7. Maintain a good public relations program that serves the best interest of the facility and community alike.
8. Maintain an excellent working relationship with the medical profession and other health-related facilities and organizations through formal working and transfer agreements.
9. Create and maintain an atmosphere of warmth, personal interest, and positive emphasis as well as a calm environment throughout the facility.
10. Recruit, select, and train competent department supervisors and other auxiliary personnel.
11. Meet with department supervisors on a regularly scheduled basis and conduct/participate in in-service classes and supervisory level training programs.
12. Receive advice from department supervisors concerning the operation of their departments and other related areas to assist in eliminating/correcting problem areas, and/or improvement of services.
13. Review and check competence of work force and make necessary adjustments/corrections as required or that may become necessary.
14. Review and interpret monthly financial statements and provide such information to the governing board.
15. Assist in the establishment and maintenance of an adequate accounting system that reflects the operating cost of the facility.
16. Keep abreast of the economic condition/situation and make adjustments as necessary to assure the continued ability to provide quality resident care.
17. Prepare an annual budget for approval by the governing board and allocate the resources to carry out programs and activities of the facility.
18. Assure that adequate financial records and cost reports are submitted to authorized government agencies as required.
19. Represent the facility at and participate in top level meetings.
20. Represent the facility in dealings with outside agencies, including governmental agencies and third party payers, or provide an authorized representative of the facility when unable to attend such meetings.21. Delegate authority, responsibility, and accountability to other persons.
22. Attend and participate in workshops, seminars, etc., to keep abreast of current changes in the health care field, as well as to maintain a professional status.
23. Authorize the purchase of major equipment/supplies as authorized by the governing board.
24. Make written and oral reports/recommendations to the governing board concerning the operation of the facility.
25. Evaluate and implement recommendations from the facility's committees; e.g., utilization review, pharmaceutical, infection control, etc.
26. Assure that the facility is maintained in a clean and safe manner for resident comfort and convenience by assuring that necessary equipment and supplies are maintained to perform such duties/services.
27. Assist in the planning of purposeful in-service training classes and on-the-job training programs that will lead to better understanding of resident needs.
28. Assist in standardizing the methods in which work will be accomplished.
29. Maintain an adequate liaison with families and residents.
30. Other related duties and responsibilities that may become necessary or as directed by the governing board.
After reading Potter's letter and the job description, Barbara Kreisberg's physicians responded that Ms. Kreisberg was legally blind and would certainly require reasonable accommodation to do the reading associated with the job but that in their opinion there was no question that she was able to do the job. This, of course, was not what Britthaven and their attorneys wanted to hear. So Margie Case wrote a letter to the doctors making the company's argument less subtly. Since the job description didn't seem to include responsibilities that absolutely demanded vision be used in their execution, she constructed hypothetical problems that might arise during the day of a nursing home administrator and stipulated the visual solutions for each in the statement of the problem. The following is the text of Case's letter. (Emphasis added.) Here it is:
January 23, 1995
Raleigh, North Carolina
Dr. Glenn Jaffe
Duke Eye Center
Durham, North Carolina
Dear Dr. Jaffe:We understand that Ms. Kreisberg, your patient, has already signed a release for you to supply information to our firm based on a medical inquiry on behalf of our client, Britthaven. You will note that the job description supplied to you is abstract, as all job descriptions are. However, there are countless situations which are specific and which would require an administrator to act based on personal observation. Therefore, we are supplementing our inquiry by presenting additional specific information in this letter. The following situations are among many to be anticipated in the course and scope of day-to-day work place experiences for an administrator. The administrator would be totally responsible for dealing with such situations. These examples are as follows:
1. A person comes into the nursing home who should immediately
be recognized as an intruder. The administrator, upon seeing the individual,
is responsible for taking immediate action to protect the people who live and
work at the nursing home. The administrator must be able to recognize who is
a family member, as opposed to, for example, a former disgruntled employee or
a total stranger.
2. The administrator walks down the hall and notices that there are places at door frames where paint has been chipped or worn away due to collision with wheelchairs or medicine carts. The administrator, who is professionally trained to watch for both aesthetics and health hazards in the building, must immediately notify maintenance to take care of the problem and must follow up to see that the maintenance work is done properly.
3. The administrator walks down the hall and sees a patient who is drooling, unattended in a wheelchair. The administrator, based upon an instant assessment of the situation, orders that a member of the nursing staff attend to the patient immediately and then writes up what was observed. Discipline may be appropriate based upon the observations.
4. The administrator sees that a number of patients do not
have their nails trimmed and cleaned appropriately. She consults with the person
who is in charge of nursing assistants responsible for grooming the patients
and, perhaps, disciplines the person responsible based upon her observations.
5. The administrator notices that a pipe is sweating on the
ceiling in the kitchen, a sanitation violation. She also knows, based upon her
examination of the facility's records, that this has been a problem in the past.
She is authorized to commission an expenditure to correct any plumbing problem
or to call the contractor or to decide whatever else might be appropriate based
upon her investigation. She must follow up.
6. The administrator notices that documents with certain staff
persons' signatures do not match with the times that these people should have
been signing the documents. Further investigation reveals that the signatures
do not match other signature samples. These documents are kept in connection
with shipments of drugs into the facility. The administrator must take immediate
action based upon her observations.
7. The administrator notices that there is a reddened patch
of skin on the buttocks of several patients in a particular area of the facility.
The condition is remarkably similar on all of the patients. The administrator
must take immediate action.
8. Several nursing assistants have decided that "while
the cat is away, the mice can play." At 2:00 a.m., when they are supposed
to be performing their job duties, they are outside smoking cigarettes. The
administrator must perform her job in such a way as to disabuse them of the
idea that they are not being watched.
9. The administrator, who has received specialized training
to be the eyes and ears of the company which owns the nursing home, notices
that there are cookie crumbs on the floor in a recreation area. She also notes
that there are heel marks on the floor at the entrance to the facility. Both
of these are the responsibility of the housekeeping staff, with whom she must
10. The administrator notices that the parking lot at the facility
is not lit well enough at night to promote a safe environment, and the spaces
are not clearly marked for people to park at night. The administrator further
notes that the outside of the facility does not present a clean, inviting appearance.
She has the authority to commission landscaping and whatever else is necessary
so that the outside of the facility is visually acceptable.
11. The bed frames and other flat surfaces in a patient's room
are not dusted properly. (This is a clear sanitation violation.) The administrator
must check such details, make this determination, and take action.
12. The administrator must be personally familiar with the
location and operation of cutoff valves in and out of the facility for water
and gas. In the event of an emergency requiring such utility cutoff, the maintenance
staff might not be present or in proximity. The administrator must handle the
13. The administrator must monitor the attic ductwork, for
example, checking behind the maintenance staff to be certain of proper maintenance.
These and many other examples can be cited which demonstrate that it will not be acceptable for another individual to accompany Ms. Kreisberg to make visual observations on Ms. Kreisberg's behalf. An administrator is trained and educated to perform these observations. Only a trained and educated administrator can make these observations.
Please keep this in mind when answering our questions about
whether Ms. Kreisberg will be able to effectively perform the duties of the
Very truly yours,
Margie T. Case
cc: Scott LaBarre, Esq. (via fax)
There you have Margie T. Case's letter, and her Britthaven clients and her own inability to conceive of alternative ways of accomplishing tasks that they would use vision to accomplish leaps from the page in every line. No administrator can be everywhere at once, and every good supervisor develops and depends upon the abilities and training of trusted staff members. Moreover, a blind person learns to use tactile cues, odors, memory, deduction, and inference to remain in control of every situation. Margie T. Case was ultimately dissatisfied with Kreisberg's physicians' responses to all her documents and her not-very-subtle request that they pronounce her incompetent. During early 1995 she repeatedly reminded LaBarre that Britthaven continued to pay Kreisberg's salary out of charity. When she eventually gave up on getting the response she wanted from Kreisberg's physicians, Case demanded that she make an appointment to see a Britthaven doctor. Then, in the midst of these negotiations, Case suddenly notified Kreisberg that she would no longer receive her salary. Case tried to assure LaBarre that the company still considered Kreisberg a Britthaven employee, but LaBarre replied that, if she wasn't permitted to do her job and if she was not receiving a salary, it was hard to see how anyone could argue that she had not been terminated. In light of all this, LaBarre advised Kreisberg not to see the Britthaven physician.
Realizing that there was no longer any chance of resolving Kreisberg's problem amicably, LaBarre and the local counsel, Travis Payne, whom the NFB had retained, filed a charge of employment discrimination with the Equal Employment Opportunities Commission (EEOC). This is the necessary first step in filing a case in federal court under the Americans with Disabilities Act. The EEOC office in Raleigh, however, has such a staggering backlog of cases waiting for action that it now takes a year even to have an investigator assigned to look into a charge. The EEOC, therefore, told LaBarre in March that they would issue a right-to-sue letter in this case. This was good news, but actually getting the letter took an additional two and a half months.
Throughout the summer LaBarre made several more attempts to resolve the problem. He gave Britthaven officials the names and phone numbers of several competent blind people in the medical field. He even arranged for Dr. Fredric Schroeder, Commissioner of the U.S. Rehabilitation Services Administration, to talk with Margie T. Case about the abilities of blind people and the legal obligation for employers to accommodate them. But it was all in vain. Ms. Case remained convinced that no blind person could competently perform the duties of a nursing home administrator. After all, she had demonstrated to her own satisfaction, if not to that of Ms. Kreisberg's ophthalmologists, that an administrator must be able to make "professional visual assessments," and she could apparently not conceive of gathering the necessary data in any other way.
In the face of this impasse, Barbara Kreisberg filed her complaint
in federal court in August of 1995. Most of this document recounts in proper
legal terms the events described in this article. Here are the concluding paragraphs:
Barbara Kreisberg, Plaintiff v. Britthaven, Inc., Defendant
16. As a result of Defendant's insensitivity to Ms. Kreisberg's disability and its discrimination against her, she has suffered and endured humiliation, damage to her reputation, mental and emotional distress, and/or pain and suffering.
17. Defendant's refusal to provide or allow reasonable accommodations to Ms. Kreisberg's disability such that she could continue to fulfill the essential functions of her job as a nursing home administrator, its placing of her on involuntary leave, and its discharge of her because of her disability constitute discrimination in violation of the ADA.
18. Defendant's refusal to allow Ms. Kreisberg to utilize accommodations to her loss of vision that she provided at her own expense, its refusal meaningfully to explore reasonable accommodations for her disability, its placing of her on involuntary leave, its requirement that she could only return to work if her vision improved to what it was when Defendant hired her, and Defendant's discharge of Ms. Kreisberg constitute gross, wanton, reckless, and/or intentional violations of her rights under the ADA, entitling her to punitive damages.
Wherefore plaintiff respectfully requests that this Court:
1. Accept jurisdiction of this case.
2. Grant Plaintiff a trial by jury on all issues so triable.
3. Declare that Plaintiff has suffered acts of discrimination at the hands of Defendant based on her disability.
4. Grant Plaintiff preliminary and permanent injunctive relief directing Defendant to provide Plaintiff with reasonable accommodations necessary for her to fulfill the essential functions of her job as a nursing home administrator.
5. Grant Plaintiff preliminary and permanent injunctive relief reinstating her to her former position as Administrator of the nursing home known as Britthaven of Wilson, with full seniority and other benefits as if she had never been discharged.
6. Award Plaintiff compensation for loss of salary and other benefits, including all fringe benefits to which she would have been entitled had her employment with Defendant not been interrupted. Such damages shall be in an amount in excess of $10,000, the exact amount to be determined at trial.
7. Award Plaintiff compensatory damages for the humiliation, damage to her reputation, mental and emotional distress, and pain and suffering that she has experienced and endured as a result of the discriminatory actions of Defendant towards her. Such damages shall be in an amount in excess of $10,000, the exact amount to be determined at trial.
8. Grant Plaintiff punitive damages against Defendant. Such damages shall be in an amount in excess of $10,000, the exact amount to be determined at trial.
9. Grant Plaintiff pre-judgment and post-judgment interest on all damages awarded, to the maximum extent allowed by law.
10. Grant Plaintiff her reasonable costs and attorneys' fees.
11. Grant such other and further relief as to the Court seems just and proper.
This the third day of August, 1995.
M. Travis Payne, Esq.
Raleigh, North Carolina
Scott C. LaBarre, Esq.
Britthaven responded to this complaint in September, denying all of the allegations. As an affirmative defense Britthaven also claimed that, because Kreisberg had filed for Social Security Disability Insurance (SSDI) in the months since her income as a Britthaven employee had ceased, she had conclusively demonstrated herself to be totally disabled. In other words, her eligibility for SSDI proved, they argued, that she was unable to carry out her old job. Such an argument may seem ludicrous to anyone who understands that eligibility for SSDI is automatic for unemployed legally blind people with enough quarters of coverage to qualify for the program. Unlike people with other disabilities, blind SSDI recipients do not have to demonstrate their inability to engage in "substantial gainful activity," just that their earnings are below the level of SGA. But absurd as the Britthaven argument is, similar affirmative defenses have been upheld in some courts, though they have been rejected in others. In the Eastern District of North Carolina, where this case was filed, there is a local rule that all civil cases be referred to mandatory mediation before being fully litigated. Through the fall of 1995 the parties continued to explore the possibility of settlement, but it became increasingly obvious that such efforts were doomed. So the two sides began making arrangements for their mandatory mediation.
On November 14, 1995, both parties sat down with John Harkavy, a mediator on whom both sides had agreed. Both lawyers made statements at the beginning of the session. Frank Ward, one of Margie T. Case's partners, said in the course of Britthaven's opening statement, "Even though you blind people can do a lot of jobs, nursing home administrator is not one of them." And that pretty well summed up the Britthaven position. It was clear that there was virtually no hope for mediation. Each side threw out figures for settlement proposals, but not surprisingly they were far apart, so the two parties began to creep toward an eventual court appearance.
During the weeks since November 14 there have been several small displays of fireworks. Margie T. Case decided to acquire by subpoena documents from a large number of sources which she could have received by asking for them from Scott LaBarre and Travis Payne directly. One of the recipients of a subpoena consulted Payne about the demand for information, and that is the way in which Kreisberg's counsel learned of the subpoenas. Payne set to work to have them quashed, but the entire little test of strength took almost three months. Barbara Kreisberg is currently scheduled to give her deposition in early March. Discovery will go on through the spring. Eventually there will be a motion for summary judgment, and no one can tell how long the court will take to rule on it.
In some ways Barbara Kreisberg's problem seems like an open
and shut case, but the Fourth Federal Circuit has a history of finding against
plaintiffs, so there is nothing to do but wait and hope. It is painfully clear
that Britthaven does not want to employ a blind nursing home administrator.
It seems equally clear to those in the Federation who have come to know her
that Barbara Kreisberg is a talented and experienced administrator, who demonstrated
even before she had much experience with blindness that she could do her job.
We must all hope that she and we win the right for her to prove to Britthaven
what she can do.
WHEELS AND WHITE CANES TIPS
BLIND WHEELCHAIR USERS
by Maureen Pranghofer
From the Editor: Maureen Pranghofer writes and speaks on
many subjects. She is a fairly recent graduate of BLIND, Inc., the adult rehabilitation
center established and conducted by the National Federation of the Blind of
Minnesota. For several years now she has used a wheelchair, so when she began
her travel training at BLIND, she and her instructor began by working out ways
for her to move about safely. Increasing numbers of blind wheelchair users are
learning that they too can be independent and confident travelers. This is what
Maureen has to say on the subject:
Whether I'm traveling through the busy Minneapolis skyway system or crossing a downtown street, I get all kinds of reactions. These range from those people who simply ignore me as they would any other passing pedestrian to those who have public panic attacks.
Daily I encounter people who want to help but don't have the foggiest idea what they should do. So, for the most part, they simply get in the way. There are people who outright pity me, those who are terrified that I'm going to run them down, and those who are simply overwhelmed.
The reason for this variety of reactions is that, for most people, a blind person using a motorized wheelchair is something new. And this newness is not just prevalent in the general public. Blind wheelchair users are an enigma among many in the rehabilitation field, among other blind people, and among other wheelchair users. I was told, for example, at an AER (Association for Education and Rehabilitation) meeting the topic of which was "Blind Wheelchair Users" that "Totally blind wheelchair users can not travel independently." This, despite the fact that the presenters had seen me independently come into the room; park myself at a table; use the restroom; and go through a buffet line, needing assistance with carrying my plate and cutting food (because of my physical disability); but not needing assistance to travel.
A blind woman whom I met recently told me that she was checking out nursing homes because she would soon have to use a wheelchair and knew that "you can't do it if you are totally blind." Then there are the disabled people who tell me about disability-training simulations in which they have been blindfolded and "Just don't know how you do it!" So here are some tips which I have found helpful in traveling and which you may want to remember when you are with someone who is a blind wheelchair user.
1. Assume that travel is possible. One of the greatest things I have found in being an NFB member and going through my eleven-month adjustment-to-blindness training at BLIND, Inc., was that Russell Anderson, my travel instructor, and the other staff at BLIND, Inc., expected that "Of course you can travel." After becoming totally blind in an accident and finding that others had virtually no expectation that I could ever be independent, I had to learn to believe that I could do it. Have high expectations.
2. If you are guiding someone who is a blind wheelchair user, walk behind the chair and give oral directions. People tend to walk in front of me and have me follow. But in that position I can not always hear what is said; and if I have to stop abruptly, I could accidentally bump them. To avoid this, people tend to turn around to face me and walk backward. Of course this makes no sense because the directions they give must then be reversed, which causes much confusion.
3. When opening doors, stay behind the door if possible. Standing in front of a door one is holding open narrows the pathway for the wheelchair user. No wheelchair user wants to run over anyone's toes.
4. Suggest that the person use a long carbon fiber cane. Finding a cane which worked for me was probably my biggest challenge initially because the other canes I tried were too heavy for me to handle. I can easily maneuver this cane, and it works well. A cane slightly longer than one used by an ambulatory person of the same height is necessary because one needs distance in order to stop one's chair. My cane, for example, is sixty-three inches long, even though if I were standing, I would be only four feet six inches tall.
5. Remember that access for one person does not ensure access for all. Wheelchair users have a variety of disabilities which affect their travel. For example, I can not use my cane independently for more than half a block or so on certain road surfaces because the resistance of the cane's movement on the pavement causes me pain and fatigue, but this would not be an issue for others who do not have my disability. Some wheelchair users are able to open doors independently while others are not. In my case opening doors is difficult, so I make use of electronic power doors, ask passing pedestrians for help, and often use my cellular phone to summon assistance for getting in and out of places in both indoor and outdoor settings.
6. Do not panic if you see the cane encounter an object. This seems obvious. But I can't tell you how many times people seem to feel that, because I am in a motorized chair, I won't stop when I encounter an object with my cane. People often seem to believe that I will either destroy what I am about to run into or get hurt myself. Bumping objects with a cane when one is using a wheelchair is no different from doing so when one is walking.
7. Encourage the seated user to hold the cane vertically when approaching curbs. During the time I was learning to travel at BLIND, Inc., we discovered that locating curb cuts was easier when the cane was held in a more vertical position. This technique assists one to locate curb cuts and curb drop-offs quite accurately. This is not the case for locating up curbs after crossing streets or for traveling parallel to curbs.
8. Keeping to the perimeter in indoor settings with large open areas or along the sides of buildings is helpful. While it is not necessary to plaster oneself against a wall or building in order to travel, I have found that staying near these landmarks is useful. It is sometimes difficult to know whether one is traveling in a straight line when one has no direct contact with the ground. For example, I have sometimes traveled diagonally, while thinking I was going straight, or have even turned without realizing it. Sound cues help, of course, and one needs to learn to use these just as any other blind traveler does, but checking for a wall or building occasionally helps me to stay on course. It also ensures that one will not inadvertently get too close to the curb running parallel to the direction of travel.
9. Be aware of objects which the cane or chair may slide under. Like anyone else traveling with a long white cane, wheelchair users occasionally contact objects that are not detectable by cane. This is one time when sighted assistance or an oral warning is helpful to a person in a wheelchair because what might bump a standing person at waist level will hit the wheelchair user in the face or head.
10. Disabilities are not static. If you are helping someone who uses a wheelchair, the individual's ability to travel distances or on certain surfaces may vary depending on how he or she is feeling that day. Some days, for example, I have traveled as far as a mile and a half along a busy, pothole-ridden street in my neighborhood which has no sidewalk. On other days, going the block and a half to the corner bus stop is barely possible.
11. Do not push a motorized wheelchair unless it is taken out of gear. In their efforts to help me, many people dash up to me and want to push my chair. Motorized chairs are not made to be pushed unless the gears are disengaged, and attempts to move them will only produce frustration. If a chair must be moved manually, ask its user how to disengage the gears.
These tips will enable you to be genuinely helpful to any blind
person you meet who happens to use a wheelchair as well. Good luck, and thanks
for the constructive assistance.
[PHOTO: Mercury Room is pictured here with two women sitting behind Braillers at a table, one talking on the telephone. A woman is coming to the table to make a report, and two others are standing behind the table. Sandy Halverson is talking on the house telephone in the corner. CAPTION: The Mercury Room operation at the Washington Seminar is conducted entirely in Braille. The Federationist in the foreground is coming to make a report of a Congressional visit. She will give her report to Charlotte McFatridge (seated right). Jennifer Lehman (seated left) is taking a report over the telephone. Sandy Halverson is talking on the house phone in the corner, and Nancy Yeager and an unidentified volunteer stand behind the table.]
THE 1996 WASHINGTON SEMINAR:
MAKE THEIR VIEWS KNOWN
From the Editor: Each year in late January members of the National Federation of the Blind begin congregating in our nation's capital to participate in the NFB's Washington Seminar. This year people began arriving in numbers at the Holiday Inn, Capitol, on Friday, January 26. As usual the first event of this winter gathering of the Federation was the Midwinter Conference sponsored by the National Association of Blind Students (NABS), which took place all day Saturday. Meanwhile others were gathering at the National Center for the Blind in Baltimore for committee meetings there over the weekend.
As usual, the NABS meeting was stimulating and energizing. It began with a party on Friday evening. But despite the short night, students were on hand early Saturday morning for a day-long series of presentations culminating in another episode in the ongoing saga "The Young and the Skilless," written by Jerry Whittle and performed by a cast drawn from the membership of NABS. The evening banquet address by Barbara Pierce continued the day's theme, "The Power of Belief."
Early Sunday morning more than a hundred eager Federationists boarded vans and busses to travel to Baltimore for a tour of the National Center for the Blind. They returned in the early afternoon in time to attend the various meetings and seminars that were scheduled at the hotel. The largest of these was the third annual seminar for parents of blind children, which attracted parents of blind children from across the country.
At 5:00 p.m. the Columbia Room was jammed as usual with eager representatives from forty-eight of our fifty-two affiliates. It was standing room only for the opening briefing of the 1996 Washington Seminar, a remarkable turn-out considering that a blizzard had all but shut down much of the Midwest, preventing a number of people from attending the event at all. During the briefing President Maurer; Dr. Jernigan; and James Gashel, Director of Governmental Affairs, brought the audience up to date on recent events in the organization and prepared the group for the following three intensive days of visits to Congressional offices.
Federationists were to talk about three legislative issues
with their Senators and Representatives this year. The first was maintaining
the linkage between the stipends of blind Social Security Disability Insurance
recipients and those of retirees between the ages of sixty-five and seventy.
The House of Representatives has passed a bill which would raise the earnings
limit for seniors over the next seven years while leaving the limit unchanged
for blind SSDI recipients. The Senate may soon consider a bill that would also
break the long-standing linkage between these two groups unless an amendment
reinstating the linkage is introduced. The second issue was to urge Congress
to include strong language in the Individuals with Disabilities Education Act
(IDEA), which is scheduled for reauthorization this year. This language would
promote the teaching of Braille to blind children in public and residential
schools. The third matter to be discussed was an amendment to the Copyright
Act to give automatic permission to not-for-profit and governmental entities
to produce copyrighted material in alternative formats for the use of print-handicapped
people. The legislative agenda and the three fact sheets used during these discussions
are reprinted here:
[PHOTO: Two men are seated in front of a fireplace in an office. There is a large mirror over the fireplace which reflects a chandelier. The Arizona State flag is on a standard to the left of the fireplace. CAPTION: James Gashel (left), NFB Director of Governmental Affairs, listens attentively to John Raidt (right), staff aide to Senator John McCain of Arizona.]
Legislative Agenda 1996
FROM: Members of the National Federation of the Blind
TO: Members of the 104th Congress
RE: Legislative Priorities of Blind Americans
Public policies and laws affecting blind people have a profound impact on our entire society. Most people know someone who is blind. It may be a friend, a family member, or a co-worker on the job. The blind population in the U. S. is estimated to exceed 700,000. Fifty thousand Americans become blind each year. By themselves these numbers may not seem large, but the social and economic consequences of blindness directly touch the lives of millions. In the form of its social consequences and to some extent its economic consequences, blindness affects virtually everyone.
Blind people as a group are engaged in a common struggle for understanding of what blindness means and public acceptance of our ability to compete on terms of equality if given the chance. More than being a matter of physical disability, the real problems of blindness are lack of good training, lack of opportunity, and lack of correct information about blindness among employers and members of the public at large. If a blind person has proper training and opportunity, the physical loss of eyesight itself can be reduced to the level of a mere nuisance.
Public policies and laws that result from misconceptions about blindness or lack of information are often more limiting than the loss of eyesight itself. This is why we have formed the National Federation of the Blind. The Federation is a private-sector resource of knowledge, encouragement, and support for blind people in the United States and increasingly throughout the world. The Federation's leaders and the vast majority of the members are blind, but membership is open to anyone who wants to join in the effort we are making to win understanding and equality in society.
Blind people are well-organized at the community and grassroots levels throughout the United States. Our policy positions are developed and determined by vote of the blind themselves. This is why the Federation is known by lawmakers and the public as the "voice of the nation's blind." Our priorities for the second session of the 104th Congress express our assessment of issues requiring particular action by Congress on behalf of the blind this year.
(1) Congress should enact exempt earnings provisions in the Social Security Act to promote greater work incentives and opportunities for persons who are blind or of retirement age. This proposal seeks to improve the work incentives provided to Social Security beneficiaries. Under a 1977 amendment to the Social Security Act, the same exempt earnings amount--$960 monthly or $11,520 annually--(the same amount allowed for seniors) is allowed for people of working age who are blind. This proposal calls for increasing the earnings exemption threshold in specified increments while preserving the identical exempt amount for blind people and seniors.
People of working age who are blind must not be forgotten as Congress continues to debate whether changes should be made in the Social Security retirement test. A significant relaxation of the present earnings limitation would encourage thousands of beneficiaries to increase their work attempts. Those who successfully find full- or part-time work will pay taxes rather than simply drawing benefits. The results of their greater efforts to be productive will positively affect the Social Security system as well as benefiting the individuals and families involved.
A complete removal of the earnings limitation would provide beneficiaries with the maximum incentive to work. In any case, the statutory linkage which ties the exempt earnings amounts for retirees and working age people who are blind together should not be broken and must be consciously kept in mind as the debate over the future of the earnings test for Social Security eligibility proceeds. For more details and an explanation of the need for this legislation, see the fact sheet entitled "Increasing the Social Security Earnings Limit: A Critical Time of Decision for Blind People."
(2) Congress should amend the Individuals with Disabilities Education Act (IDEA) to include provisions for strengthening programs of Braille literacy instruction. This can be done by enacting Braille literacy for blind persons provisions as part of the Individuals with Disabilities Education Act (IDEA). Goal Five of the National Education Goals declares that by the year 2000, "Every adult American will be literate. . . ." For blind people this means having the ability to read and write in Braille at a level of proficiency which makes performance on equal terms possible. Without legislative change, today's blind children will not be able to meet this national goal.
As many as 32 percent of the blind students enrolled in elementary and secondary schools in the U.S. during the last school year were classified as "non-readers." Fewer than 10 percent read Braille. Current federal and state laws require that an appropriate educational opportunity must be provided to children with disabilities. Each such child is to have an individually planned program of instruction to meet identified needs, but growing illiteracy for blind children has been the result. Remedial federal legislation, similar to laws now enacted in twenty-six states, can help to reverse this trend. For more details and an explanation of the need for this legislation, see the fact sheet entitled "Braille Literacy and the Individuals with Disabilities Education Act."
(3) Congress should amend the Copyright Act in order to permit non-commercial reproduction and distribution of published works in specialized media exclusively for use by blind or disabled persons. This proposal would establish an extremely narrow and targeted limitation on the exclusive rights of copyright holders. The provision would specify that it is not an infringement of copyright for a nonprofit or governmental entity to convert published works into formats appropriate for distribution exclusively for use by blind or other persons with disabilities who cannot physically use standard print.
Bills now pending--H.R. 2441 and S. 1284--each include a variant of this specialized accessible media proposal. The primary purpose of both bills is to adapt U.S. copyright laws to developments in modern technology and the potential of the National Information Infrastructure. While the language contained in these bills acknowledges the need for improved copyright provisions to promote production of publications in specialized media, the proposed new section would institute a one-year waiting period for conversion of published works into formats which blind people can use. For this and other reasons, including lack of clarity of terms, a proposal for modifying the language is being offered. For more details and an explanation of the need for this legislation, see the fact sheet entitled "Access to Information for Blind Persons: How Copyright Amendments Could Help."
People who are blind are asking for your help in securing positive
action by Congress in the areas outlined here. Legislative proposals will be
offered to achieve each of our specific objectives. Many priorities confront
this session of Congress, but the needs of the nation's blind must not be overlooked.
We of the National Federation of the Blind stand ready to assist our Representatives
and Senators to understand our needs and to take meaningful action to address
them. In partnership with the National Federation of the Blind, each member
of Congress can help build better lives for the blind both today and in the
Increasing the Social Security Earnings Limit:
A Critical Time of Decision for Blind People
Background: The Social Security earnings limit, also known as the "retirement test," is widely recognized as causing a significant work disincentive. For this reason Congress is moving toward final approval of a bill to raise the earnings limit by specified increases over seven years. Two separate bills--H.R.2684, which passed the House in December, and S.1470, which is pending on the Senate calendar--would change the earnings limit and are likely to receive further consideration before Congress adjourns next fall.
Blind people of working age will suffer a severe setback if
the House-passed approach to the earnings limit changes becomes law. This is
because the House bill would repeal a provision in the Social Security Act which
exempts earnings of blind people and senior citizens to the same extent. The
effect of the repealer provision--Section 2(b)(2) of H.R.2684--would be an earnings
limit for seniors of $30,000 beginning in 2002 while the limit in effect for
blind people would be less than half that amount. The reason for increasing
the seniors' exempt amount is to diminish the disincentive caused by the present
$11,520 earnings limit and to increase work and productivity. By the same reasoning,
the higher earnings exemption should also apply to blind people who, like the
seniors, are penalized for working.
Existing Law: Section 216(i) of the Social Security Act specifies what "blindness" means. The definition of blindness is clearly stated in medical terms. Therefore, blindness can be determined quite reliably on the basis of objective medical evidence. This unique feature of the Social Security Act makes blindness the only defined disability. All other disabilities are determined on the basis of an individual's "inability to engage in substantial gainful activity." This inability is actually hard to determine reliably in many cases.
Although blindness is precisely defined, monthly disability
insurance benefits are not paid to all persons who are blind. Under the law
benefits are paid only to those people who are blind and who do not have substantial
earnings. Wealth not resulting from current work activity does not count as
earnings and has no effect on eligibility. Only work is penalized, just as with
retirees. The amount of earnings considered to be "substantial" for
working people who are blind is the same amount that senior citizen retirees
may earn without having their Social Security benefits reduced due to excess
earnings. This amount is currently $960 monthly or $11,520 annually. Precisely
the same section of the Social Security Act--paragraph (D) of Section 203 (f)(8)--is
used to establish the respective exempt earnings standards for retirees and
for persons of any age who are blind.
Proposed Amendments: The amendments made by H.R.2684 and S.1470 are identical in respect to phased-in adjustments in the earnings limit. The modifications to the earnings limit would occur over a seven-year period. Section 2(b)(2) of either bill would specifically exclude blind people from the mandated adjustments.
In order to address this inequity, Senator Jeff Bingaman has prepared an amendment to be offered during floor consideration of S.1470. His amendment is designed to preserve the linkage of earnings exemptions for blind people and seniors. The National Federation of the Blind (along with every other organization having interests in the blindness field) strongly supports this amendment and opposes the linkage-breaking provision passed by the House. By creating an earnings limit that is lower for blind people than for seniors, the House-passed bill would apply a harsh work disincentive policy to blind Americans.
Although H.R.2684 passed the House in December, support among House members to retain the linkage of earnings exemptions in a final bill is substantial. Attesting to this, a concurrent resolution--H.CON.RES 23 by Congresswoman Barbara Kennelly--has attracted 179 cosponsors. This expressed support is still building and must be considered when negotiations occur on the final bill.
Need to Remove Work Disincentives: Continuing the existing policy by mandating the adjustments in the earnings limit for blind people as well as for age sixty-five retirees will assure that an estimated 104,300 blind beneficiaries will receive a powerful work incentive. Most blind people could then not lose financially by working. The mandated earnings limit changes, if made applicable to blind people, would be cost-beneficial, since among those of working age 70 percent are currently unemployed or underemployed. Most of them are already beneficiaries. At present their earnings must be strictly limited to $960 per month. When earnings exceed this exempt amount, the entire sum paid to a primary beneficiary and dependents is abruptly withdrawn after a trial work period.
When a blind person finds work, there is absolutely no assurance
that earnings will replace the amount of lost disability benefits after taxes
and work expenses are paid. Usually they do not. Therefore, few of the 104,300
beneficiaries can actually afford to attempt substantial work. Those who do
will often sacrifice income and will certainly sacrifice the security they have
from the automatic receipt of a monthly check. This group of beneficiaries--people
of working age who are blind--must not be forgotten as the debate proceeds toward
modifying the Social Security retirement test. Just as with hundreds of thousands
of seniors, their positive response to the higher amounts of earnings allowed
will bring additional revenues into the Social Security trust funds. Work, productivity,
and the opportunity for more people to pay taxes are constructive and valid
goals for blind people and senior citizens alike.
[PHOTO/CAPTION: The Delaware delegation and Jim Gashel met with Senator William Roth, Jr. during the Washington Seminar. Pictured here left to right are Joe Kawhnile, Donna Frost, Richard Bennett, Senator William Roth, Jr., Jim Gashel, and James Sullivan. Lynn Sullivan is seated.]
Braille Literacy and the Individuals with
Disabilities Education Act
Background: The National Literacy Act of 1991 defines "literacy"
as "an individual's ability to read, write, and speak in English and compute
and solve problems at levels of proficiency necessary to function on the job
and in society to achieve one's goals and develop one's knowledge and potential."
This definition points up the critical importance of emphasizing high-quality
literacy training programs for all Americans. For blind Americans, especially
school-age youth, the need is no less critical. Yet surprisingly few students
who are blind or visually impaired receive instruction in Braille as a part
of their elementary and secondary education programs. Blind students are generally
defined as those who see less than 10 percent of what is seen by someone with
normal eyesight. During the 1993-1994 school year there were approximately 54,000
such children enrolled at the elementary and secondary levels in the U. S. Only
5,064 of these students read Braille. The vast majority use print materials
even in situations in which reading with sight is an unrewarding, never-ending
daily struggle. Educators often resist teaching Braille until students are unable
to make any progress at all in school by using print. As a result, Braille has
become not the method of choice but the method of last resort.
Existing Law: The Individuals With Disabilities Education Act
(IDEA) contains federal standards for special education and related services
to be provided to children with disabilities throughout the U.S. The most important
standard is that each such child is entitled to a "free, appropriate public
education." Education agencies, both state and local, receive federal funding
to assist in meeting this mandate. When special education services are provided
to a child, there must be an Individualized Education Program (IEP) to describe
the needs of the child for special instruction, the services to be provided,
and the goals to be achieved. The law also requires the use of qualified personnel
to deliver services. The components of an "appropriate education"
are not strictly defined in IDEA. As a result it is easy and tempting for school
personnel to determine a child's needs largely on the basis of the school's
capacity (or lack of capacity) to provide special instruction or services. This
being the case, blind students who may have even a limited ability to read print
are guided toward receiving instruction in that form instead of using Braille.
Procedural safeguards, including the right to challenge decisions through administrative
and court appeals, exist under IDEA, but such proceedings are time-consuming
and costly in financial and educational resources.
Proposed Legislation: Congress should amend the Individuals with Disabilities Education Act to include provisions for strengthening programs of Braille literacy instruction. Grants to state and local education agencies are permanently authorized under part B of IDEA. However, the authorization of funds for certain ancillary programs under IDEA technically expired on September 30, 1995. Bills to extend the expired authorizations are being reviewed in both the House and the Senate.
The proposal for federal legislation on Braille literacy is
necessary to support laws with a similar purpose which twenty-six states have
now enacted. These laws require individualized assessment of a blind student's
need for Braille. The federal legislation will be designed to ensure that Braille
instruction and services are actually included in each blind child's IEP unless
all members of the planning team agree that use of Braille is not necessary
to meet the child's literacy needs. Specific language to incorporate this requirement
into section 614 of IDEA is expected to be included in a reauthorization bill
which the House Committee on Economic and Educational Opportunities will consider
during the present session.
Need for Legislation: It is the policy of our nation as stated in the National Education Goals that by the year 2000, "Every adult American will be literate and will possess the knowledge and skills necessary to compete in a global economy and exercise the rights and responsibilities of citizenship." In order for blind adults to achieve this goal, literacy instruction must be strengthened for children. The direction of current trends and educational programming shows that this goal will not be achieved without deliberate corrective action. According to official child count figures supplied annually by state and local education agencies, 32 percent of the blind students at the elementary and secondary levels are "nonreaders," and the percentage of nonreaders increases every year. The number who read Braille is correspondingly declining.
The experience gathered in many states over several years shows
that a legislative response is needed to reverse this trend of growing illiteracy
among blind school-age youth. By enacting a strong Braille literacy provision
when programs under IDEA are reauthorized this year, Congress can provide the
leadership to ensure that blind students graduate from our nation's schools
literate and armed with the necessary skills to be first-class citizens of our
Access to Information for Blind Persons:
How Copyright Amendments Could Help
Background: For blind people the inability to read standard
printed text can severely limit both the quantity and type of information available.
This is due in large part to the fact that the great mass of readers can be
reached cost-effectively with the printed format. Also publishers do not consider
formats other than standard print to be cost-effective. This is largely so because
of the extremely small market for non-ink-print editions of published works
and the cost and complexity of using other media. Even so, publishers have the
right by law to cry foul if a nonprint edition of a published work is reproduced
and circulated by another source. This right can be enforced even if republication
using specialized media and reaching a unique audience, such as blind people,
is sponsored and paid for by a noncommercial source. In fact, conversion of
published text into Braille or other usable formats for the blind is done as
a nonprofit or governmental public service in virtually every instance. However,
the service cannot be provided until the copyright holder's approval is obtained.
Existing Law: Section 106 of title 17, United States Code,
known as the Copyright Act, presently gives copyright holders the exclusive
right to circulate published works. The copyright holder's exclusive rights
apply to any format in which the published work might be re-distributed. The
same rights also apply even if the distribution format used by the copyright
holder by its very nature prevents effective use of the material by blind people.
The only applicable limitation on a copyright holder's exclusive right in this
regard permits noncommercial broadcast transmission of information under narrowly
prescribed conditions for use by blind, deaf, or other persons with disabilities
who cannot use standard printed matter. Section 710 of title 17 provides authority
for copyright holders voluntarily to wave exclusive publication rights in accordance
with regulations made by the Librarian of Congress. The purpose for this voluntary
process is to permit transcription of nondramatic literary works into Braille
or sound-recorded formats. This section makes possible a national network of
specialized library services for blind and disabled persons with leadership
from the National Library Service for the Blind and Physically Handicapped of
the Library of Congress.
Proposed Legislation: Congress should amend the Copyright Act in order to permit noncommercial reproduction and distribution of published works in specialized media exclusively for use by blind or disabled persons. This proposal would establish an extremely narrow and targeted limitation on the exclusive rights of copyright holders. The provision would specify that it is not an infringement of copyright for a nonprofit or governmental entity to convert or distribute published works in formats exclusively for use by blind or other persons with disabilities who cannot physically use standard print.
Bills now pending--H.R. 2441 and S. 1284--each include a variant
of this specialized accessible media proposal. The primary purpose of both bills
is to adapt U.S. copyright laws to developments in modern technology and the
potential of the National Information Infrastructure. The language grants non-profit
organizations the right to reproduce or distribute Braille, large type, or other
editions of literary works if the copyright holder has not entered the market
with such editions within one year from the date of original publication. The
audience for the specialized media is not precisely defined other than the obvious
inclusion of blind and visually impaired persons.
Need for Legislation: The pending amendments to the Copyright Act are needed to support the further development and use of the evolving National Information Infrastructure as well as to protect the legitimate intellectual property interests of authors and publishers. Beyond this, since use of printed media is no longer the only option for dissemination of published material in many instances, the advancements being made in technology used to create, store, retrieve, and disseminate ideas hold great promise for blind and visually impaired people.
In contrast to sighted people, who are able to purchase a plethora of reading matter from readily available commercial sources, blind people in the general population have tax-supported, specialized libraries as virtually their only source of published literature. Suppliers, other than specialized libraries, do exist for disseminating textbooks in Braille and spoken-word formats, but the population they serve consists mainly of elementary, secondary, and post-secondary students. The libraries provide Braille and "talking book" services to approximately 800,000 people nationwide.
Funds for mass reproduction of reading matter for the blind do not go very far in meeting the real needs of this diverse population. In books alone, as many as 40,000 new titles are published in the English language each year. Using libraries as exclusive suppliers, less than 5 percent of these newly published works are converted annually into Braille or sound-recorded formats. Moreover, delays sometimes exceeding a year can result from the present copyright clearance system. In a society whose members increasingly depend upon access to information for successful living, blind people cannot afford to endure a growing gap in their access to knowledge. Amendments to the Copyright Act could help, however, by allowing immediate conversion of published works into specialized media and by promoting greater use of alternatives to ink print in publishing technology.
If you or a friend would like to remember the National Federation
of the Blind in your will, you can do so by employing the following language:
"I give, devise, and bequeath unto the National Federation
of the Blind, 1800 Johnson Street, Baltimore, Maryland 21230, a District of
Columbia nonprofit corporation, the sum of $__________(or "______ percent
of my net estate" or "The following stocks and bonds: ________")
to be used for its worthy purposes on behalf of blind persons."
[PHOTO/CAPTION: Ed Bryant]
FOOD AND DRUG ADMINISTRATION HOSTS MEETING ABOUT INSULIN-VIAL DESIGN
by Ed Bryant
From the Editor: The following article first appeared in the Voice of the Diabetic, Volume 11, No. 1, Winter 1996, published by the Diabetics Division of the National Federation of the Blind. Blind diabetics have been trying for years to persuade insulin manufacturers and the U.S. Food and Drug Administration of the importance of finding some way to make insulin vials easily identifiable by touch. Since many diabetics are blind and many more have sight that fluctuates from day to day, it would seem obvious that a significant segment of the insulin-using population would benefit from such a modification. In fact, one expert says that every diabetic, with or without impaired vision, makes an occasional mistake in dosage because of mixing up vials, so any attempt to multiply the number of ways in which people could be reminded of what type of insulin they were about to inject would seem to make good sense. But, of course, change costs money, and everybody has a different idea about how the job could be done most effectively or for the least expense. So the negotiations drag on. Moreover, the insulin producers have taken it into their heads that the tactile markings must not be too noticeable for fear that sighted users might find offensive any reminder that diabetes and blindness frequently go together.
Ed Bryant is the Editor of the Voice of the Diabetic.
Here is his latest report on the Division's struggle to make manufacturers
agree to clear tactile identification for insulin vials and to see that the
U.S. Food and Drug Administration holds them to it:
Four years ago the Diabetics Division of the National Federation of the Blind began campaigning for modifications in insulin packaging so that blind insulin users could safely distinguish between insulin types. The specifics have been discussed extensively in the Voice of the Diabetic, but what matters for the present discussion is that change is needed.
Adaptive equipment is available, allowing blind diabetics or those with significant vision loss accurately and dependably to draw insulins, test blood glucose, and perform most other tasks of daily diabetes self-management. The only missing element, the only step these users cannot yet take with confidence, is to identify the type of insulin in a specific vial safely. Such identification is essential for our safety, especially with the new quick-acting insulin, Lyspro, now awaiting Federal Drug Administration (FDA) approval.
In January of 1992 I received a letter from a Voice reader, pointing out the danger of confusing vials of the different types of insulins. In April, 1992, I wrote a letter to the insulin manufacturers about this problem, and I forwarded a copy to Dr. David Kessler, Commissioner of the U.S. Food and Drug Administration. In May of 1992 I wrote directly to Dr. Kessler. In June of 1992 an FDA Consumer Safety Officer delivered the official response, and in July of 1992 our Diabetics Division sponsored a national survey about insulin-vial design in order to arrive at a consensus. Ninety-four percent of the survey respondents (a mix of blind and sighted diabetics and rehabilitation professionals) believed that some sort of change was needed.
Fifty-six percent said that changing the shape of the vial was the best solution; thirty-eight percent said that adding tactile markings would be sufficient. Of those preferring tactile markings, most did not indicate a preference for marking either vial or label. Twenty-nine percent of respondents voted for a combination of distinguishing vial shape and tactile-label markings. Regarding colored labels as a solution, only 6 percent approved. I interpreted these figures as ample evidence that most survey respondents would prefer to be able to distinguish insulins by touch.
Since late 1992 a number of articles in the Voice have reviewed our progress.
In time and with reader support--hundreds of people wrote to Commissioner Kessler--we convinced the FDA to bring all the interested parties together, finally discussing the problem of tactile insulin-vial identification face to face.
Before the meeting, scheduled for October, 1995, I circulated
a memo to all scheduled participants: the National Federation of the Blind,
the American Association of Diabetes Educators, the Institute for Safe Medication
Practice, the American Council of the Blind, the American Diabetes Association,
the Juvenile Diabetes Foundation, the Food and Drug Administration, Novo Nordisk
Pharmaceuticals Inc., and Eli Lilly and Co. Here it is:
September 11, 1995
TO: FDA Meeting Participants
FROM: Ed Bryant
SUBJECT: October 19, 1995, meeting
RE: Tactile Markings on Insulin Vials
A number of tactile cues could facilitate non-visual insulin identification. They are here ranked in order of their desirability:
(1) In the past some insulins were packaged in containers having a square cross-section (shoulder) and some in containers with hexagonal shoulders. Although the concentration so regulated is no longer manufactured, this federal regulation is still on the books. Stability testing is required when any changes are made to the primary container of any injectable medication, but in the past the FDA has considered it safe for insulin to be packaged in containers with round, square, or hexagonal top cross sections.
Under the scheme we propose, short-acting insulins would remain as they are today, packaged in cylindrical vials. Intermediate-acting insulins would be packaged in similar vials, but having cross-sections (shoulders) of rounded square shape, and all long-acting (L or U) insulins would be packaged in cylindrically-shaped vials with hexagonal shoulders. There would be no other changes to the primary container, and internal dimensions would remain the same as they are today.
(2) Although reading standard Braille is impossible for many blind diabetics, identifying large embossed letters would not be. Fishburne Enterprises of Hemet, California, markets the Fishburne Alphabet, a series of symbols embossed onto thin sheets of vacuum-formed plastic, designed expressly for blind persons with diminished tactile sensation (such as those with diabetic neuropathy). Samples are enclosed.
Significant for our purpose is not the Fishburne Alphabet itself, but the material upon which it is embossed. The thin sheets of polystyrene can easily receive standard print, so no current labeling information would need to be altered or deleted. I would note that the print should be as bold and full of contrast as possible--ideally black-on-white. Before it is attached to the vial, the plastic label would receive two simple sets of embossed symbols.
At the right side of the 3 by 7 cm label, where the letters "R", "N", "L", or "U" are now printed, those letters would be embossed as well. They would be raised and could thus be felt by those who could not see them. The bigger the better, but I note the current letters are 1 cm in height; however, 1.5 cm would be clearer. Larger letters, embossed after printing, would also help combat the problem of fluctuating vision.
Along the left side of the label, near the place some products display a bar code, the label would bear one, two, or three raised dots (tests might show the feasibility of a fourth dot for "U" insulins). "R" insulin would bear one dot, "NPH" would have two, and the slow-acting "L" and "U" would have three. These dots could be further improved by roughening, perhaps by application of a grainy material during the label-printing process. Of course, they would be of sufficient size and separation for a blind individual with severe neuropathy to determine the number of dots with a finger or fingernail.
The raised dots on the label should resemble the dots on the Count-a-Dose T-bar (sample enclosed). Where two or three dots (or four if feasible) are used, a space of 5 by 7 mm should separate them, and they should be arranged in a single vertical row.
Please note that the dots and the raised letters are meant to be used together. Each tactile cue-type supports the other. When this system is tested (by insulin-users with varying degrees of sight loss and neuropathy), other symbol systems, such as a raised square, circle, and triangle or dots and bars as in the Fishburne Alphabet, might be tested for comparison as well.
(3) In the past pharmaceutical bottles were cast in bivalve molds. Raised embossed lettering was the rule. Such lettering was astonishingly durable and frequently survives--archaeologists dig up old bottles, and pharmacists collect them.
A variant for today, if all other modifications were unacceptable, might be to cast a radial pattern of raised dots into the shoulder of the vial; one for Regular, two for NPH, and three for L and U. Like those Jordan Medical puts on the Count-A-Dose T-bar, these dots would have to be tall enough to be detectable by individuals with neuropathy. A radial pattern is less desirable than a linear one, but better than systems that depend on sight. The vial's shoulder provides adequate surface area for such a pattern of symbols, unlike the wildly impractical idea of embossing the lateral edge of the aluminum ring that retains the rubber stopper. Not only is the ring too small to carry symbols of sufficient size; any change to its current conformation would seriously affect makers of a number of adaptive insulin-measuring devices for the blind and those losing sight.
The Problem of Fluctuating Vision
Blind diabetics are not the only ones who would benefit from
the adoption of a system of bold tactile cues. Daniel L. Lorber, M.D., Editor
in Chief of Practical Diabetology, reminds us in a recent editorial (Volume
14, No. 2) that the average sighted diabetic mixes up insulins at least once
a year. Tactile cues could cut that frequency. He also states: And let's not
forget the large number of sighted, but visually impaired, patients who have
difficulty reading insulin-bottle labels. There are far more people with decreased
acuity due to macular degeneration or capillary closure than one might think.
In my own diabetes practice, visually impaired patients far outnumber the blind.
Many diabetics experience the insidious visual impairment known as fluctuating
vision. One day their vision is fine; but on the next, reading may be difficult
or impossible. Couple this with the natural reluctance of many individuals to
admit, even to themselves, that they are losing vision, and you have a very
strong argument for the inclusion of tactile cues on all insulin bottles. Some
diabetics use prefilled or reloadable insulin pens, and though such systems
preclude mixing (one uses "premixed" cartridges or a second insulin
pen), users could still benefit from the presence of tactile cues. Systems vary,
and precise placement of such cues would be a matter for experimentation.
Any system adopted to help blind and visually impaired diabetics distinguish between insulins must be simple, reliable, and universal. "Simple" means it must contain no more information than is required for self-management. "Reliable" means unambiguous--different users should achieve the same results. It also means durable since the tactile cues must survive for the life of the insulin in the vial. "Universal" means it must be part of all insulin vials, NOT simply available as a pricey option. There are as many as two million legally blind diabetics in the U.S., and if they and the sighted are to benefit from a system like the one described here, it must be part of all insulin vials.
The amount of insulin dispensed in the United States is not
a guess. With the completion of the diabetes control and complications trial
and the rise of tight control and multiple-injection regimens, the opportunity
for misidentification is rising dramatically. What all participants in this
meeting need to keep uppermost in mind is that one simple mistake, one insulin
mix-up--the product of avoidable ambiguity--can be fatal. Adoption of a system
of universal tactile cues will help alleviate this deadly ambiguity.
That was my pre-meeting memo. On October 19, 1995, the meeting took place at the Parklawn Building, FDA headquarters, in Rockville, Maryland. Moderated by Consumer Safety Officer John Short of the FDA's Division of Metabolism and Endocrine Drugs, the meeting brought together representatives from the insulin industry, organizations of the blind, and associations concerned with diabetes. Mr. Short began it by stating that the meeting would not have taken place "but for the efforts of Ed Bryant and the Diabetics Division of the National Federation of the Blind. ...Ed forced the meeting to happen," he said, and he was glad of it.
Mr. Short went on to say that for a number of years the FDA had discussed the blind drawing insulin, but: "Until recently we were pretty much under the impression that totally blind diabetics always needed assistance, someone sighted measuring and giving them their insulin on a daily basis. ...It didn't take long for Ed to straighten me out on this," he told the audience, "informing me that totally blind diabetics are very capable of taking care of themselves." He said that I had told him that, to bring about the needed changes, I needed assistance from the insulin manufacturers and the FDA.
He hoped the participants would conclude with concrete suggestions that the insulin manufacturers could implement so that diabetics with impaired vision could have total assurance that they were administering the correct insulin. Several participants made formal presentations. I delivered the first, a recap of the points covered in the memo reprinted here.
Eli Lilly and Company, the manufacturer with 80 percent of the U.S. insulin market, made no presentation, but Novo Nordisk Pharmaceuticals Inc., the only other insulin maker in the U.S. market, brought examples of different possibilities for tactile marking and discussed them in detail. Most of the meeting was spent in the informal exchange of ideas between the industry, the consumer organizations present, and officials of the FDA.
One option Novo Nordisk discussed was supplying tactile labels to the pharmacist to attach to the insulin vial at time of sale. They had done it in Europe but found little demand, so they had discontinued it. The same fate overtook their plastic snap-on insulin vial collars, also supplied to the pharmacist. A sighted person had to attach these collars to the correct vials. Novo assumed that a colleague or parent of the blind insulin user would do this. One diabetes educator observed that Novo Nordisk's snap-on collar would not have allowed use of the Load-Matic insulin-measuring device. Any vial modification that inhibits use of tactile insulin measuring devices (like the Count-A-Dose and Syringe Support) is unacceptable. Most participants (including the manufacturers) agreed that after-the-fact add-ons, whether attached by pharmacist or consumer, are no better than the rubber bands and tape already used by many people as tactile markers. Tactile cues need to be permanent, universal, and attached by the manufacturer.
One participant, with expertise in the safe handling of pharmaceuticals, observed that nurses and other caregivers sometimes administer the wrong insulin because vials (identical except for the printed label) have been unintentionally switched in their boxes. He said: "If vials were differentiated by shape or had some other strong tactile cue to help people differentiate [between them], we would have far fewer medication errors in insulin use."
Other participants pointed out that different insulin formulations are sometimes switched in their boxes at the pharmacy, with a less expensive formulation being sold in the box of a more expensive product. FDA officials present confirmed this occurrence.
What is needed is something universal on all insulin vials, applied by the manufacturer--the same symbols for both manufacturers--and sufficiently clear for an individual with severe neuropathy to distinguish between types. One way to achieve this is by changing insulin vial shape, using vials with different dimensional features for the different insulin types: R, N, L, U, and soon Lilly's quick-acting Lyspro.
Although they had done so in the past and although Novo Nordisk packages insulin for sale in Europe in slightly different vials from those marketed in the United States, the manufacturers showed no interest in changing vial shape. Current insulin vials are produced from glass tubing, and shaped or embossed types would require molded glass. Several antique molded-glass insulin vials were passed around the audience, and everyone but the manufacturers agreed that it was extremely easy to achieve tactile identification with the old-style bottles.
The manufacturers presented a variety of objections to changing vial shape. Most were centered on increased per-unit cost. Even though Burroughs-Wellcome Company markets a neuromuscular blocker for surgical use in a molded vial with a hexagonal neck, the insulin manufacturers insisted cost considerations precluded such an approach to insulin packaging. There was some discussion of increased breakage risk with molded vials, though which was the culprit, the molding or the glass formulations of the 1950's, was never specified. The manufacturers showed no inclination to change vial shape, and the FDA showed less to push them.
Having long since agreed that something needed to be done, both manufacturers were pursuing schemes of their own. Lilly's answer seems to be some sort of device--currently in the patent-application stage--so the Lilly representatives could not reveal the details. When I asked one about it, he responded: "Some things can't be talked about." Novo Nordisk, which wants to mark only the "R" insulins, proposed a scheme, already used in Europe, to place a raised dot on the aluminum ring holding the stopper in the insulin vial. "R" insulins would bear the dot; other types would be smooth. They distributed samples of vials bearing this mark for our inspection. It was very hard to feel the dot.
Several individuals commented that, to be sufficiently obvious to individuals with neuropathy, the dot needed to be much more sharply raised, like Braille. An experienced diabetes educator stated that many diabetics could not feel such a dot, and if it were kept small enough not to interfere with use of the Count-A-Dose and other tactile insulin measurement devices, it would be undetectable by people with profound neuropathy, even if they were using a fingernail.
Novo Nordisk also manufactures a line of pen-injection devices, and some of these are used by blind and visually impaired diabetics, even though in the U.S. the products carry a warning stating: "Not for use by blind or visually impaired persons without sighted aid." Insulin mixing in a pen device is impossible; a user who needed to mix would load factory-premixed cartridges or use two pens. To distinguish between pens loaded with different insulin formulations, pen manufacturers use different-colored trigger buttons, a solution which is of no help to blind diabetics. At the meeting Novo Nordisk distributed samples of pen devices marked with a tactile dot, and the same objection holds for that dot as for the dot on the stopper-ring of the insulin vial--it is too small.
A diabetes educator pointed out that designating pen-injection devices as "for tactile, non-sighted use" (as Novo Nordisk recommends) while including the legal disclaimer against unassisted use by blind individuals "seems like a little cognitive dissonance."
Another tactile way to distinguish between insulins discussed at the meeting was raised symbols on the label. Inclusion of a tactile symbol on the label would require a switch from the paper or nylon labels currently in use to the plastic sheets (described in the memo to participants).
The manufacturers pointed out that switching to embossed plastic labels would require retooling of the labeling process and could raise the per-unit cost of insulin. Lilly pointed out that the durability of any such raised tactile cue is not known and would require further study. There was much discussion of the proposal to mark only the "R" insulins tactilely. Diabetics who mix insulins almost always use only two types, with "R" as one of the types, the other being "N" or "L" or "U." To mark the vial of Regular insulin would cut, but not eliminate, the ambiguity.
Note: Once the new quick-acting Lyspro insulin analog is available, some users, while not likely to mix Lyspro with Regular insulin, may have three vials to keep track of. A rare few patients, users of continuous cycling peritoneal dialysis, might use a Lyspro/NPH mix in the daytime and Regular at bedtime, to deal with the extra glucose coming in during the cycling procedure. Lilly stated that, if the goal were to mark one type only, rather than distinguishing among all the types, they would be more willing to consider making the necessary adjustments, as long as such marking did not include changing vial shapes.
Novo Nordisk described marking regular insulin only as a minimum solution. Most meeting participants agreed that tactile-marking only the "R" insulin would be an acceptable short-term solution while something better is worked out, though a number cautioned that the short-term solution must not become the long-term solution by default.
The insulin manufacturers, along with German manufacturer Hoechst A.G. (which had an observer at the meeting), had just concluded a series of negotiations with the FDA to set up a scheme for universally color-coding the various types of insulin. The goal is commendable, and the adoption of uniform color codes will certainly reduce dispensing errors at the pharmacy counter (both blind and sighted participants reported such errors), but the system they have adopted does not address the needs of blind diabetics who with the appropriate tools are fully capable of independent self-management.
Both insulin manufacturers expressed the sentiment that any tactile insulin marking should not "cause discomfort" to insulin users without visual impairment by "reminding them that such may be looming in the background" for them. I asked them: "Is the issue that you don't want people to think they may become blind?" Finding this quaint attitude astonishing, I suggested to the manufacturers that many diabetics might take better care of themselves if they were reminded of some of the ramifications of diabetes. Education, not silence, is the answer.
Equally quaint was their assumption that tactile labeling was only for the blind. Dr. Daniel Lorber, editor of Practical Diabetology, pointed out (in the quotation I cited in my memo to meeting participants) that the average sighted diabetic mixes up insulins once a year, and tactile cues could cut that frequency. Color-coding and large-print labels help but cannot answer the needs of the blind or those with fluctuating vision, whose ability to distinguish shape and color may change unpredictably from one day to the next.
Both the insulin manufacturers and the FDA seemed preoccupied with issues of world-wide distribution, surprising for the FDA, which is charged by statute with protecting the health of Americans.
A number of other possible tactile-marking ideas were proposed. One involved some sort of shrink-wrap around the insulin vial (rejected by Lilly, who said the shrink-wrap oven's heat would damage the insulin). Another involved a tactile-raised label placed on the bottom of the vial (rejected by Lilly, who said that the weight of the vial could flatten any tactile marking on its base). Still another involved an extra-long label end, that could be folded up and over to make a tactile mark. (This idea was rejected by Novo Nordisk, who said that there was new technology for attaching labels without glue. They were sure such a label change "would cause problems in the equipment lines, as so many labels fed through, and they'd be sure to jam equipment.")
Lilly said that there is no one obvious solution, but many possible solutions--some too costly and others "cost-effective." "Anything is doable," they said, "but the need is to achieve the best system possible--and for that you have to go back to the manufacturer." They reminded the audience that pharmacist-applied tactile labeling systems have another, heretofore unmentioned weakness: the increasing number of consumers who obtain their insulins from mail-order supply houses. These individuals never meet their pharmacists.
Lilly also pointed out that insulin has a shelf life of two and a half years (before expiration date). Once a change is introduced, even if it is universal, it will be at least two and a half years before all insulins on the market reflect that change.
At the close of the meeting moderator John Short stated that
this would be an ongoing discussion and that in future we might involve folks
in the labeling and packaging business in our meetings. Tom Ley, President of
the Diabetics Division of the National Federation of the Blind, reminded the
audience that consumers will make the final decision whether a given proposal
works or not. "The best solution is a tactile solution," he informed
the manufacturers. We agreed to meet again in three months.
We've come a long way. The issues are on the table, and both manufacturers and regulators know what we need and why we need it. We are aware that the real work of insulin-vial change is just beginning; talk without action is not sufficient.
Our Diabetics Division has been lobbying the manufacturers for four years now. Novo Nordisk, which made an extensive presentation at the meeting, did not put forward any proposal that had not existed before our campaign began. Eli Lilly, which has been helpful and supportive throughout, is in the final stages of product development and made no presentation.
I hope Lilly's focus on their new product, to which I am sure they have committed substantial financial resources, will not preclude their consideration of other possible solutions that may emerge at our meetings. I look forward to seeing what positive use both insulin manufacturers make of the suggestions already generated.
While we search for a permanent solution satisfactory to all, a number of temporary solutions, quick to implement, have been proposed. The best of these involve a definite tactile cue on the Regular/fast-acting insulins, distinguishing them from N, L, and U types. As I have previously said, it is vital to prevent temporary solutions from becoming permanent by default. Several proposals have emerged since the meeting. The simplest of these involves attaching a thin circular band of embossed plastic (like Dymotape) around the insulin vial above or below the label. This strip, attached by the manufacturer as part of the labeling operation, would be embossed with appropriate tactile marks. Alternatively, the tape with its embossed symbols might be transparent and wide enough to fit directly over the label. In either case the tape would be applied by the manufacturer.
Another proposal involves a slight modification in the vial-making procedure. To manufacture vials, a long tube of hot glass is trimmed like sausages and shaped appropriately. To receive its flat bottom, the hot vial is pressed against an anvil. This proposal involves incising a tactile symbol on the anvil so that its reverse would be printed on the bottom of each vial. The vial's shape would be unchanged; the bottom would merely bear a tactile symbol. On November 13, 1995, I forwarded these proposals to the insulin manufacturers and the FDA for their consideration.
On November 17 I sent details and an illustration of another possible tactile marking to the insulin manufacturers and the FDA. This one would involve a 3 by 3 mm downward-projecting tab as part of the vial's aluminum stopper-ring. The resulting projection (on vials of Regular or fast-acting insulin) would be easily detectable, even by individuals with severe neuropathy. The tab would not interfere with use of any tactile insulin measurement devices, would not modify vial shape or label, and should require only one modification on the assembly line at the point where the ring is clamped tight to seal the filled vial.
I expect that other new proposals will be devised, and one
of them may be the best answer we have all been working for. Hopefully we will
see real breakthroughs at the January, 1996, meeting. The Diabetics Division
of the National Federation of the Blind will continue to lead the way, and the
Voice of the Diabetic will keep blind diabetics informed.
[PHOTO: In the first picture Chad Schearer is gazing through binoculars while Ted Hart stands (gun in his right hand, pointing to the ground, and cane in his left). CAPTION: Chad Schearer and Ted Hart PHOTO: In the second picture Ted Hart lies prone, aiming his rifle. Chad Schearer lies beside Hart, looking over his shoulder through the barrel-mounted scope. CAPTION: Chad Schearer directs Ted Hart's aim by looking through the barrel-mounted scope. PHOTO: In the third picture Ted Hart stands facing the camera with his antelope on the ground in front of him. The head and part of the neck are visible, and it is clear that the antelope is very large. CAPTION: Ted Hart and his antelope]
TED HART: HUNTER AND LEADER
by Kenneth Jernigan
He's totally blind, and he recently killed an antelope. It's not the first kill he's made.
When I went to Iowa in 1958 as Director of the State Commission for the Blind, I set up shop in a few small rooms in a former high school building. There wasn't much money, and there wasn't much staff; but we had enough for a beginning. One of the first things we did was to establish an orientation center. We conducted home-ec classes in the homes of staff members; we washed pots and pans in an old laundry tub; and we borrowed and made do.
The 1959 Legislature gave us the money to buy the old YMCA building in Des Moines, and we moved into it in 1960. One of the early students was a fellow named Ted Hart. He started in the old high school building in 1959, and he moved with us to the new quarters in the YMCA. He stayed until some time in 1960. Shortly thereafter, we helped him get a job at the John Deere Plant in Waterloo, and not too long ago he retired with thirty years of service.
It sounds like a run-of-the-mill story, quickly told and soon forgotten. But wait! There's more to it than that. Take the time in 1960 shortly after we had moved into the new facility. I had been out of town, and as I was flying back into Des Moines, the passengers on the plane kept talking about the smoke they could see. When we landed, the news was waiting for me that the smoke was from our new building. It was on fire.
I went as fast as I could get there and stayed the night. It was late afternoon, and it was already well below freezing. Thousands of gallons of water were being pumped into the building, and we were facing ruin. How much could we salvage? What could we save? All of us, students and staff alike, pitched in with frantic effort. Throughout the night we moved furniture and equipment, swept water with broom and mop, and loaded carts and hunted dry places. One of the crew was Ted Hart.
This was not the only dramatic episode during his training. In fact, the day-to-day building of confidence and the realization that a job and a full life were his for the taking were far more exciting. And it all came true--a wife, children, a job, friends, and community involvement.
That was thirty-five years ago. Ted lives in Waterloo, Iowa,
and I am a long-time resident of Baltimore. Our friendship has continued, but
we don't see each other very much on a day-to-day basis--now and again at a
Federation function and once in a while in passing. The old days at the Iowa
Commission for the Blind in Des Moines seem long ago and far away. And then
the other day Ted Robbins of Montana sent me a newspaper article. Here it is:
Great Falls Tribune, Friday, October 27, 1995
Hunting with `borrowed eyes'
Blindness doesn't stop antelope hunter
by Jeffrey Mayor
At the age of 55, Ted Hart is taking time to enjoy retirement. After all, the Waterloo, Iowa, resident put in his thirty years with John Deere as a machinist.
Hart had hunted for white-tail deer and pheasant back home, but he wanted to try hunting in the big-game mecca that is Montana. Every hunter has heard the tales--some true, some not-so-true--of the trophy animals to be had under the Big Sky. So when Hart met local guide Chad Schearer last year at an Iowa sports show, he decided this might be time to try big-game hunting in Montana.
This being his first trip to the Treasure State, Hart opted to go after pronghorn antelope. After a little practice shooting on that Saturday, Hart and Schearer went after antelope on a ranch near Geraldine on opening day.
Five hours after they got started, Hart had bagged a fourteen-inch buck, gutted it, helped carry it back to the truck, and celebrated a little.
Nothing unusual for sure, until you learn that Hart is blind and has been since the age of ten.
In Hart's case, however, it was certainly nothing unusual. He carried his own gun, followed Schearer when they had to move to get a better shot, and, with a little visual assistance from Schearer, made the shot.
The hunt was made possible because of Hart's customized .30-06 Savage, a willingness on Schearer's part, and an intense desire by Hart to do all the things he wants.
"I'm not going out there, just standing there and shooting away. People just don't have any idea of what we did to pull this off," Hart said over lunch at Fort Benton cafe. "I wasn't up there slinging lead. If I was going to do that, I'd use a machine gun," he said with a gentle laugh.
"It's the old stereotype that blind people are helpless."
It's a stereotype Hart is doing his best to dispel.
"I realize it's OK to be a blind guy--it took me a few years to realize that. All we want is a chance to be like everyone else. I want the chance to make it or fail on my own," Hart said.
Hart has been creating his own chances since that day forty-five years ago when he was kicked between the eyes by a horse. "I was blind before I hit the ground."
He raised a family, worked for John Deere, taught his children to drive, and taught his boys to hunt. His Montana antelope hunt was just another opportunity.
"With me, this antelope hunt was just a matter of fact, this is something I'm going to do. God made it possible for me to do all these things," Hart said.
On that sunny, windy day, the hunting gods were certainly good to Hart.
They were already in the field at 7:00 a.m., and there were plenty of antelope around. At one point there were seventy-five does around the trio. Schearer's father, S.C. Schearer, joined them to record the hunt on videotape and 35mm film.
"About 11:00 a.m., we saw three does and a buck coming toward us," Schearer said. "We skirted around this ridge, but we were still 300 yards away."
With Hart at his side, Schearer led them closer. Finally peeking over a rocky ridge, they were within range.
"But the buck was eating away from us. Finally he went broadside and I started giving Ted directions--left, up, right. Then I said, `On three, shoot.'
"One, two, three--boom. But the shot went right above him. He put in another shell and boom. I started yelling, `You hit him.'"
"Chad and his dad started dancing around and cheering," Hart laughed.
"It didn't get exciting for me until I saw the antelope with my hands. That's when it was real. I was calm when we were shooting. I was doing just exactly what Chad was telling me and nothing else.
"I got excited when I could feel it. It was the knowledge that I had done it, that we really had shot the antelope."
As the two recalled the details of the hunt, Hart burst into laughter when Schearer urged him to tell about some of the things Hart had "seen" during the hunt.
Apparently, while following Schearer, Hart came across a cattle calling card.
"I had turned around and there was this big, old footprint right in the middle," Schearer said.
"I saw it all right, with my feet," Hart said. "There was no way it could have been anything else."
But that is how Hart sees, with all his other senses.
"Every part of me is an eye. It's not the eye that sees, but the brain," Hart said.
"That's why I had to go down and feel the antelope. It wouldn't have meant a darn thing if I couldn't go down and see the animal. It would have been as if Chad shot him."
But Hart did more than see the animal.
"I walked everywhere we went, I carried my own gun, I gutted my own animal. I told Chad if I was going to do it, I was going to do it myself," he said.
"It was a normal, guided hunt except he borrowed my eyes to shoot; he did everything else. He was more of a diehard hunter than a lot of guys I've hunted with," Schearer said.
"This put me on the bandwagon that blind people can do as much as a sighted person," Schearer said.
"I had a lot of outfitters tell me I was crazy, it would take so much extra time, but we were tagged out in five hours. Ted was out here for the enjoyment of the hunt. A lot of sighted people think the only successful hunt is if they harvest an animal."
Hart admits that hunting is not something each blind person can do. But, he added, he is not unique. "This is not for every blind person, but it's not for every sighted person," Hart said. "But I should have the right to decide for myself, not have someone make the choice for me. Society doesn't know what I want."
How does a blind guy hunt?
by Tribune Staff
How does a blind guy hunt? Chad Schearer and Ted Hart have heard that question plenty of times. All it takes is a customized rifle, a little practice, and the patience every hunter requires.
Hart brought a new Savage .30-06 with him for his Montana antelope hunt. The gun had been customized by Hart's brother-in-law, Larry Pearson, a gunsmith in New London, Iowa.
Although there was a laser site mounted under the barrel, Hart did not use it for his hunt.
Instead, he and Schearer relied on the 3x-7x scope mounted on a special bracket and a Harris bipod on the barrel. The bipod provided additional stability while the two were aiming.
Crafted out of aircraft aluminum, the bracket extends out four inches and them rises another seven inches. That created an angle that allowed Schearer to look over Hart's shoulder and give him aiming directions as they lay on the ground.
"I would tell him up, down, right, or left," Schearer said.
"We went out on Saturday so we could shoot together. All those shots hit the target," Schearer said. "I had so much confidence after we shot."
Hart said he hopes to return to Montana next season to go after elk. He would also like to go to Canada bear hunting. Then there is bow hunting, another sport Hart wants to try.
Getting the opportunity is the bottom line for Hart, regardless of the sport or activity.
"It's not a matter of can I or should I, but finding the vehicle to make it work," Hart said.
When I read that article, I called Ted on the phone. He hadn't read the story, and one of his first questions was, "Did they mention the Federation?"
When I told him no, he expressed annoyance and said, "Well, I told them to."
He didn't have much time to talk to me since he was on his way out the door to attend a meeting of the Blackhawk County Chapter of the National Federation of the Blind. Incidentally, he's Chapter President.
Ted tells me that he feels he has had a wonderfully full life
and that he looks forward to the future with joy and enthusiasm. He says that
the two things that have been the most important in helping him succeed have
been his Christian faith and his contact with the National Federation of the
Blind. As far as I am concerned, Ted is a living embodiment of many of the principles
we taught in those early days at the Iowa Commission for the Blind. I took great
satisfaction from my conversation with him.
CONFIDENCE AND THE CAPRINE EXPERIENCE
by Stephanie Pieck
From the Editor: Stephanie Pieck (her last name rhymes with deck) is a member of the National Federation of the Blind of New York. She is young, ambitious, and energetic.
She also has an unusual job, or perhaps the proper word is
passion. In addition to teaching English, Spanish, music, and Braille, she raises
and shows goats--not just any goats, prize-winning ones. Blind people are engaged
in doing all kinds of interesting things. Here is Stephanie Pieck to tell you
something about one of the more unusual ones:
Raising goats is not what you would consider a typical job--cattle, sheep, or horses yes; but not goats. And raising goats is certainly not what people would think of as a feasible job for a blind person. There's too much requiring sight. Of course, there are also people who dispute these claims; I happen to be one of them.
I took the usual route into goat raising that many youngsters follow: they were a 4-H project. Even before 4-H, my family had them, however, since my brother was lactose- intolerant. At first we had ten or fifteen goats, maybe twenty in the spring after the kids were born.
When my parents realized that goats weren't just a passing fancy with me, they helped me register my own farm< name with the American Dairy Goat Association, and in 1987 the first kid was registered with my farm name: Song of Joy Gusto's Jubilee.
Early the following year our family competed for the first time at a national goat show. It was held in Harrisburg, Pennsylvania, and over two thousand goats competed. I took part in the youth showmanship contest and placed fourteenth in a class of over fifty. As far as I know, it was the first time a blind person had participated in the event. Later in the show, which lasts a week, I took part in the Nubian intermediate doe kid class. Nubians are a specific breed of goat of African and Asian descent, with long, droopy ears. All the animals at the national show were does. Intermediate kids were those born between March 1 and April 1. My entry, Song of Joy Chorus Line, was twenty-first out of seventy-nine contestants. Again, it was the first time a blind person had actually exhibited her own animal.
My farm continued to grow slowly over the next several years, and in 1993 I registered my first LaMancha kids. LaManchas, which are a unique American breed, have very short external ears, hence the nickname, "earless goats." I went again to the national show that year; it had come back to Harrisburg. One of my LaManchas, Song of Praise My Alleluia, was nineteenth in the junior kid class. (She was born after April 1, so she was put in that category.) And one of my Nubians, Song of Joy HL Arabesque, was seventeenth in a class of sixty-nine milking does between the ages of two and three years.
The highlight of the 1993 nationals, however, came at about one in the morning of the fourth day of showing, when one of my Nubians was chosen reserve national junior champion. In other words, I had the second best non-milking Nubian doe in the United States.
In 1994 I was the second blind person to take the American Dairy Goat Association's (ADGA) Judges' training conference. I missed receiving my license by one and a half points. I don't count that as discrimination, since I had very little judging experience, and I was very nervous making my presentations to the panel. The conference committee asked me to write a proposal about how a blind person could act as a judge, since some of the requirements (such as reading tattoos and disqualifying animals with improper markings) cannot be done without sight. My suggestion: Work with a consulting judge. They do it at national shows, so why not at regional ones too?
Also in 1994 I was chosen to serve on the Educational Materials Committee. Since my selection I have helped the ADGA have its guidebook produced in Braille, and its quarterly newsletter is now available on cassette. Still in 1994, I took two animals to the North American International Livestock Exposition in Louisville, Kentucky. We did extremely well: my Nubian was third in her class, and the LaMancha was seventh in hers. I handled both animals and received many inquiries about whether or not they were for sale. The group I was traveling with thought I was crazy since I kept blankets on the does for the entire trip down and because I gave them beer to drink when we arrived. They stopped kidding me after several of their animals got sick from being cold. When they saw my does making tremendous amounts of milk (while theirs were barely filling their udders), the teasing about beer-drinking goats stopped too.
Early in 1995 I was asked to do a presentation in Florida about how a blind person could manage to keep goats. I told the director that I would not because such a topic suggested that keeping goats was an amazing feat for someone who couldn't see. But I did agree to share with other breeders techniques that don't rely on sight, such as delivering kids, judging conformation, and diagnosing other health problems. I used a live animal in my presentation, and aside from keeping the audience in stitches for a good part of the discussion--the goat wouldn't be quiet or stand still--many people told me afterward that they had learned a great deal. One woman who was losing her sight came up to me and said that she had gained a lot of confidence from the things I had said. She had assumed that, when her sight was gone, her goats would have to leave. Needless to say, I was very glad that in such a short time I had been able to show it didn't have to happen.
When it comes right down to it, confidence is one of our strongest allies. I have been told many times that blind people can't show their goats. Some judges have even placed me last in a class simply because I was blind. Others don't think blind people can stack hay bales, clean stalls, move grain into storage bins, or deal with large, aggressive male goats during the breeding season.
For all these people I try to serve as an example. They have seen me handle 300-pound bucks (male goats) that wouldn't allow anyone else to catch them. They have gotten a good look at the back of my overalls and my goats when they place behind me in showmanship classes. And they have stood at ringside as several of my does were awarded permanent championships. Each time they have said, "You can't" to me, I have answered them with, "Why not?"
In 1996 the national show is coming to Springfield, Illinois. Am I going? You bet I am! I'm already making plans: choosing which animals to breed and when they will have their kids, saving money to pay for the trip, and dreaming. Everyone is trying to produce the best goat possible, and my blindness doesn't prevent me from doing that too. Toward that goal I have bred several of my LaMancha does to a buck who has been ranked number one in the United States for the last three years.
In closing I would like to say a word about helpfulness. This story has mostly been about what I have accomplished and my aspirations for the future. But I couldn't have achieved any of it without the help of others. In 1993 I started a newsletter for disabled people with goats. That year I also attended my first state convention of the NFB of New York. I met many people there who encouraged me to continue what I was doing. I met even more when I attended the National Convention in Detroit in 1994.
To everyone in my family (Federation and otherwise) I want to extend a huge, heartfelt thank you! And if, by some wonderful chance, I come back from Illinois with another national champion goat, you will be among the first to hear about it.
[PHOTO/CAPTION: John Earl Cheadle]
by John Earl Cheadle
From the Editor: One of the agenda items at the 1995 seminar for parents of blind children conducted the day before the beginning of the annual convention of the National Federation of the Blind and sponsored by the National Organization of Parents of Blind Children was a panel of family members talking about the benefits of being associated with the NFB. The presenters were sighted parents, children, and siblings of blind Federationists. John Earl Cheadle was one of the panelists. His brother is Charles Cheadle, an active teenage member of the NFB of Maryland, and his parents are John and Barbara Cheadle, both of whom are staff members at the National Center for the Blind. Barbara also serves as President of the National Organization of Parents of Blind Children. Here are his remarks:
One spring afternoon, as I lay relaxing in my room, the phone rang. I picked up the receiver and started talking to the woman on the other end of the line. The conversation--a fairly typical exchange relating each of our adventures over the course of the day--took an unexpected turn when she asked me to give a speech on the benefits of growing up in the NFB, and give it at the NFB's National Convention no less! After considering a number of answers I could have given this woman, I finally responded, "Sure, Mom, I'd be happy to."
Sitting down to write this speech, I at first felt overwhelmed at the enormousness of the task at hand. How was I supposed to put into words the positive effects of eighteen years--my entire lifetime--of the NFB? Then a revelation of divine proportions struck me: All my life the NFB has provided me with the essential ingredient necessary to lead a happy and productive life--lots and lots of good food! Now it is certainly true that excellent food is served at NFB picnics, cookouts, chapter meetings, state conventions, and of course here at the National Convention. But I am not talking about just that kind of food. I am talking, for instance, about brain food. Through the NFB I have come in contact with some of the leading minds in areas as diverse as statistical mathematics and social justice. I can't count the number of times I've quoted Dr. tenBroek, Dr. Jernigan, or President Maurer to create a more intellectual term paper or class discussion.
Barbara Pierce, with her thorough knowledge of post-secondary institutions, was invaluable to me as I embarked upon my search last year. I helped read for Scott LaBarre as he studied for his bar exam and learned more than I ever wanted to know about tort law. The vast literature has helped me complete more than a few school projects. And the people of this organization have been to me teachers and mentors as excellent as those of any school. So I am exceedingly thankful for the brain food of the NFB.
Since I was born, the NFB has also raised me on a healthy diet of justice. As a young infant I was protesting unfair treatment of the blind. (I'm sure my parents will be happy to show you pictures of my days picketing in a stroller.) For most people my age justice is nothing more than an assignment in a philosophy or literature class, probably given to them about the time they were sleeping off the previous night's party. But for me it is alive. My parents work for it day in and day out. My sister and brother and I have to educate our peers at every turn that the blind deserve to be treated justly because they are normal people and should therefore be given all the normal human rights to which everyone in this nation is entitled. I have watched and upon occasion helped the NFB correct injustices of every sort--small injustices and large ones, those which are swiftly defeated and those that require years of fighting before they are finally trampled into dust, injustices that are derived from ignorance and those that are brutally intentional. The NFB has given me energy, philosophy, and strategy to fight injustice. So I count justice food as one of the best benefits of growing up in the NFB.
Finally, I could not talk about the benefits of being an NFB kid without mentioning my brother Charles, known to many of you as Chaz. Please allow me a moment to brag on my brother. He is enrolled in the high school from which I graduated a month ago, earning A's and B's in the college- level courses offered there. He is active in his Boy Scout troop and is working on his Eagle project. He plays guitar, harmonica, and a little piano. He was recently appointed to the Governor's Committee on Service for the State of Maryland and has put in countless hours of volunteer work at the National Center for the Blind in Baltimore. Chaz has given me quite a bit of firsthand experience of a blind person, although I rarely think of him that way anymore.
He's my brother. He helps me out when
I need it; he makes me laugh even when I don't feel like laughing. And he finishes
off the food on my plate when I'm too stuffed to move. The NFB has given me
one of the best foods of all, brotherhood. However, these foods in and of themselves
are not the most wonderful gifts I have received. The food of the National Federation
of the Blind has provided me with a second family. In most cultures and religions
food holds an importance far beyond the mere alleviation of hunger. It represents
community--community with nature or God or other people. This is the greatest
benefit of growing up in the NFB: being an integral part of a community to which
I give some of my energy but from which I derive a power so much greater than
my own that who I am is no longer defined solely by my personal achievements
but increasingly by the achievements of the community in which I function. The
great benefits of growing up in the NFB have included such rich varieties and
enormous volumes of food that it is with a proud and thankful heart that I can
say that I am fed up to here with the NFB! [laughter and applause]
[PHOTO: Maria Morais is pictured here at convention using her cane as she walks. CAPTION: Maria Morais]
STANDING ON THE SHOULDERS OF GIANTS
by Maria Morais
From the Editor: Maria Morais was
a 1987 NFB scholarship winner. She is currently pursuing doctoral studies in
special education. This article appeared in A Personal Perspective, the publication
produced by the alumni chapter of the Louisiana Center for the Blind, edited
by Ollie Cantos. Compilation of the book was part of the tenth anniversary celebration
of the Louisiana Center for the Blind,
which took place in October, 1995.
Anyone who has graduated from the Louisiana Center for the Blind is familiar with Joanne Wilson's prophecy that, if you do not become involved with the National Federation of the Blind, you will not become the whole, successful person that you could have been. I heard her say this to perhaps two dozen others before she directed these comments to me. At first I believed that she wanted our involvement to bolster numbers at meetings and conventions. It was not until I had left Ruston that I came to realize the true meaning of her admonition.
Perhaps the most important lesson I learned during my stay in Ruston was not how to cross a street or how to cut up a chicken or even how to read and write Braille; it was instead how to give back to others what I have received. While it is true that I could not have gone on to earn a graduate degree and secure a job without the skills I acquired during my training, I certainly could not have gone on to do these things with the same degree of success if I had not become an active participant in the Federation. My four-hour round trip to get to monthly chapter meetings would have seemed a staggering burden without the countless hours of travel training that made me a confident traveler. But, more important, I understood how important it was to get to these meetings to ensure that I was doing all I could to grant others the opportunity to have training similar to that I had been given.
A good training facility is a starting point--a place to begin exploring the practical and philosophical aspects of our blindness, what blindness means to us individually and as a part of the community. All blind people are victims of misconception and prejudice inflicted upon us, not merely by our society, but also by ourselves. In much the same way a recovering alcoholic finds support in Alcoholics Anonymous or a Christian finds solace in attending religious services, members of the Federation are reaffirmed in our conviction that we deserve first-class citizenship by working with our local NFB chapters.
Perhaps even more important, we can find the strength we need in others when we are doubtful or wavering in our own convictions. If it were not for this constant source of reassurance and reaffirmation, we would all gradually lose the positive attitudes and confidence which we so adamantly fought to gain. While we may not lose the blindness skills by staying away from the Federation, our convictions and drive would soon diminish without the constant reinforcement by others who believe as we do.
I have met Federationists who do not possess the same level of skills which I have had the opportunity to develop. Nevertheless, they make their way to chapter meetings and other gatherings of the Federation family to work collectively so that good training will be available for others and for future generations. It was the combined efforts of these individuals in the past that enabled NFB Center students to have the extraordinary training that we in Louisiana have all been so fortunate to receive.
Sir Isaac Newton said, "If I have seen further, it is because I have stood on the shoulders of giants": Dr. Jacobus tenBroek, the founder of our Movement, and Dr. Kenneth Jernigan, the driving force and long-time leader of our organization, and of course, Marc Maurer, our current President, Dr. Jernigan's student and a man who is quickly finding his own place in our history. There are hundreds of others, many of whom we have never even had the privilege of knowing personally. These giants have all striven to ensure that our generation will be given a more nearly equal chance to compete with our sighted peers. Their work has not only altered the laws and practices in this country for dealing with blind people, it has also irrevocably raised the level at which each of us has been able to begin in our own struggle to reconcile ourselves with blindness.
We are quick to accept the improved conditions which cost those who went before us so dearly, but we must also undertake the challenge to become the giants for tomorrow's students to stand on. We are the hope of those who follow, and this awesome burden should lie heavily on our minds and souls. The only meaningful way to fulfill our obligation to future generations is by contributing our voices and efforts to the work of the National Federation of the Blind.
When Joanne speaks to us of becoming or remaining active in the Federation, she does so from experience, not just her own, but that of all of those with whom she has come into contact over the years. She is not motivated by personal gratification, but rather by her conviction that we will flourish through involvement with, or wither through disassociation from, the most powerful force for positive change--the National Federation of the Blind.
NFB Center training is the most effective
means for blind people today to achieve their personal goals, since traveling
independently, preparing meals, and finding and keeping good jobs are essential
parts of living a normal life. Although these skills are certainly crucial goals
to achieve, perhaps the most vital function of a center is to instill in each
of us the conviction that there is no shame in being blind. Only through collective
action and shared experience can we continue to grow and confirm the truth of
our affirmation that it is respectable to be blind.
[PHOTO: Richard Frazier is pictured working
at a kitchen counter. CAPTION: Richard Frazier works in the kitchen at BLIND,
THE MIND'S EYE CAPTURES WHAT THESE FANS DON'T SEE
by Jim Klobuchar
From the Editor: Occasionally
a reporter gets a line on a potential story concerning blind people and manages,
despite the odds, to get it more or less right. That is what happened in late
1994 in Minneapolis--a minimum of sentimentality, no talk of bravery in the
face of catastrophe, just blind people taking their place in society. In this
case a fan noticed two enthusiastic young Minnesota Vikings fans who had season
tickets and who happened to be blind. They came to game after game and clearly
enjoyed being part of the crowd, having as good a time as everybody else. The
man happened to mention these fans to a friend, Jim Klobuchar, who was a reporter
for the Minneapolis Star Tribune. Klobuchar tracked down the fans, Mike
Heilman and Richard Frazier, both of whom are active members of the National
Federation of the Blind of Minnesota and graduates of BLIND, Inc., the adult
rehabilitation training center conducted by the NFB of Minnesota. Mike also
serves as President of the affiliate's student division. The story about the
two that Jim Klobuchar wrote appeared in the Star Tribune on December
29, 1994. It was reprinted in the Fall, 1995, edition of the Minnesota Bulletin,
a publication of the NFB of Minnesota. Here it is:
A young rooter in the airy sections of the Metrodome went passably nuts Monday when DeWayne Washington sucked up a San Francisco fumble and ran it into the end zone. His exuberance has to be explained, because he didn't see the play.
He didn't see a play all night. He didn't see one the game before, either, or the game before that, and neither did the guy next to him. But nobody had a bigger blast watching the Vikings win.
When you buy a season ticket, you get to demand winning. So here were two season ticket holders--the peerage at the ballpark--who couldn't see what was happening but pounded on the stiffs in front of them as the crowd exploded, and high-fived and carried on into the kickoff. Which means we have to take one minute here to figure. What brings them into the Dome showing season tickets, a kid nineteen, who has been blind since thirteen, and his pal, twenty-two, born with a condition that produced blindness?
The answer will tell you something about young lives with a drive and a yen for howling good times, willing to pay their way for it, and never mind the darkness. It says something about the horizons in those lives, possibilities unseen but ones that exert the hard pull of independence. You can watch a game without seeing it. You can get there by earning it. You know that DeWayne Washington is charging into the end zone because Dan Rowe and Joe Senser are busting a gut about it on KFAN. But you can do more than listen. You can watch by visualizing, and Richard Frazier, at least, knew almost exactly what Washington was doing. He pictured the embracing teammates and the triumph in the face of the player. He saw it in mental replay, remembering the scenes on television and at the park when he was a boy.
Mike Heilman never saw football that way. He saw images and movement, and still does, although those are receding. He can't see the ball or differentiate the uniforms. It's just shaded movement, making him legally blind. For Richard, the fellow in the seat next to him, it came to an end when glaucoma took his sight at age thirteen in Iowa.
They met at the BLIND, Inc., Center in Minneapolis, where both enrolled to broaden the skills that the sightless need to deal with the daily grind of making it in a world without light. Richard, his mother, and siblings came from Des Moines to be close to the center. Mike's parents live in Northfield, where they run a restaurant. When he finished at the center, Richard started teaching there, showing kids years younger that it was possible. They had to think in distance, not in bonds and barriers.
With the money he made, he bought Vikings season tickets. In the seat next to him was Mike Heilman, who did the same with money he makes marketing part-time in Twin City Storm Sash while attending college. Neither applied for a gold star for working while going to school. This is their world, and since that world includes a universal need for options and independence and that world also includes pro football games and pro basketball games and camping and skiing, well, do it.
It also includes, for Richard, the University of Minneapolis and courses in African-American studies and, for Mike Heilman, classes pointed toward a major in psychology. Mike lives alone in an apartment in South Minneapolis. Richard lives with his mother, sister, and two baby brothers in a Minneapolis suburb.
But why face the stadium and the mob, people bumping you around in the corridors, and stairways, people who don't realize you can't see them? "That's the whole idea," Mike said. "People--it's the energy you get from them. I feel it. The broadcasters lay out what's happening on the field. You can picture that. If there's some side stuff that you want to know about, you can ask your neighbors in the section. They'll tell you because everybody's into it. It's the adrenaline the crowd gives you. The whole thing energizes you."
In other words, they're like anyone else who buys a ticket.
They go to games together when they're able, but they don't go through any synchronize-your-watches production to do it. They'll get a lift in somebody's car or use public buses or use a white cane to walk from the bus stop. Sometimes they plan to rendezvous at a station or corner or place, and sometimes they don't. Whatever works. "They were sitting not far from me for the Chicago Bears game a month ago," said Bob Wallien, a retired teacher. "It was just fascinating, seeing them rough-housing with the rest of the crowd, pulling out money for beverages and junk like everybody else, but one of them saying "This is a ten" by the way it was folded. And the vendor went into his act and pitched a box of Crackerjacks to one of them. It was one of those three-point shots that drifted and banged one of the young season ticket holders from BLIND, Inc., in the head. The vendor didn't know the situation, and everybody got a yuk out of it.
Mike and Richard missed each other in the corridor jam after the game. Nobody panicked. One of them got a ride home from a stranger, the other took the bus. They're a good match. Richard is a snappy talker, bright and animated. Mike is one of those guys who examines, thinks it out, looks for the gradations. They're both big in the kitchen, but if either is going to write a cookbook, give the edge to Richard.
"Cajun cooking is where I'm at," he discloses. "It's me." But it wasn't on Monday at the Metrodome. What he was Monday was a Vikings fan aching for a look at Deion Sanders, the traveling light show who plays cornerback for San Francisco.
"He's the guy," Richard said. "I kept waiting for them to give him a call on the radio."
But the Vikings were awfully bashful about throwing the ball in the middle of Deion's circus. So Richard just visualized without cues. Deion hunched five yards off the line. No, three yards off the line. No. On the line.
"You can figure out a lot about
what the guy is doing. You don't have to see him, although that would be nice."
Looking at it that way, Richard may have seen more than his neighbors in Section
[PHOTO/CAPTION: Angela Howard]
THE BIG MOMENT OF DECISION
by Angela Howard
From the Editor: The following article
is reprinted from A Personal Perspective, the tenth anniversary publication
of the Louisiana Center for the Blind, the adult training center conducted by
the National Federation of the Blind of Louisiana. The book was produced by
the Center's alumni organization and edited by Ollie Cantos. Angela Howard is
currently a freshman at Guilford College in North Carolina, where she is majoring
in history and women's studies.
Like most blind children with some remaining vision, I was always made to feel extremely ashamed of my blindness. My parents were told I should make use of what vision I had; therefore, I was never introduced to such alternative techniques as Braille or the cane. I used large print books in school, causing me many headaches, backaches, and embarrassing moments when I was forced to read aloud in class. I would become extremely uncomfortable hearing the word "blind," even if the conversation had nothing at all to do with my lack of sight. For as far back as I can remember, I felt inferior to my classmates and friends. I never imagined I would be able to lead a normal life.
As I got older, my problems grew worse. Textbook print got smaller while my vision kept deteriorating. I would spend six or seven hours a night studying and still barely passed. I spent a tremendous amount of time worrying whether I could go out to eat or even walk down a hall without falling over something. I missed out on many parties and school activities simply because I was afraid of traveling at night or in a new environment. I had no notion of what it was like to be free, and I don't really think I cared at that point. My main concern was hiding my so-called visual problem from as many people as I could. I knew I would never live a fulfilling life, and fooling others into thinking I was doing so was the next best thing.
But my life was changed when I was given the chance to participate in the first children's program at the Louisiana Center for the Blind. Much like the adult program at the Center, the Buddy Program is designed to give blind people training in the alternative skills of blindness as well as developing positive attitudes about blindness in us and setting us on the path towards freedom. Growing up around people with attitudes about blindness that left much to be desired, I naturally rejected the alternative techniques of blindness and philosophy offered to me by the staff. I resented the fact that the counselors referred to me as "blind," and I hated using the cane, which shouted my darkest secret to the world. But, as time went on, I began to realize that blindness didn't have to mean incompetence or inability. No longer ashamed of admitting I was blind, I began to understand the importance of using a cane and Braille. I was so excited at my newfound freedom that I couldn't wait to show the world all that I had learned.
I wasn't prepared to cope with the negative attitudes I faced when I returned home. I brought my cane to school my first day of junior high. I'll never forget the looks on my friends' faces when I showed up at school with my white cane. They couldn't understand why I would want to carry that thing. "Why in the world would anybody want to use something that identified her as blind?" they asked.
One day I asked one of my friends if she wanted to go to the movies one weekend. She thought for a while and said, "I don't know. Are you going to use that cane?" At that moment I was ready to put the cane in the back of my closet and never use it again. Looking back, this was the big moment of decision for me. Here was someone I knew well and whose opinion mattered to me. She wasn't comfortable with my using a cane when I was with her, and I didn't like the thought of having to deal with the cane issue every time I wanted to go out. But I suppose it was that overwhelming feeling of independence I had gained by using it that gave me the courage to tell my friend, "Yes, I use it everywhere I go."
As for Braille, I was so excited at the prospect of being able to read more quickly and easily and for an extended period of time that I pushed myself to learn all of Grade II Braille in one month. I couldn't wait to begin using it in school. However, my vision teachers had other ideas. They told me that Braille was too slow and that I would make too many mistakes using the slate and stylus. When I began arguing with them about the usefulness of Braille, they took me aside and told me I needed to quit prancing around, thinking I could do everything.
I learned important lessons from those experiences in junior high. I learned how to deal with friends and family who were ashamed to be seen with me now that I used a cane. I also learned to advocate for myself and do things the way I knew was more efficient. Most important, I learned the importance of staying involved in the National Federation of the Blind. If I hadn't had my Federation friends at the Louisiana Center for the Blind to encourage me and reinforce my belief that I could be independent and successful, I would have fallen back into my old way of doing things.
A Federation member convinced my VI teachers to let me use Braille in school and turn in my own typed work. They reluctantly agreed, and I proved to them that Braille was more efficient and that my work could look just as nice as the work produced by my classmates. They even began teaching other students Braille and turned to me for advice on how to motivate the other kids.
It's funny to see how things change. My friends eventually
got used to my cane. They can now look back and see what a difference it has
made in my travel skills. A few of my friends were recently complaining about
a blind person they know who refuses to use a cane. "Her life would be
so much easier," they said. I smiled to myself, thinking how much their
attitudes about blindness have changed and also how much my own attitudes have
changed. I now realize that, had it not been for the NFB's establishment of
the Louisiana Center for the Blind which eventually gave rise to the Buddy Program,
I wouldn't be where I am today.
[PHOTO/CAPTION: Pat Barrett]
MY SURE, STEADY CLIMB TOWARD SELF-CONFIDENCE
by Patrick A. Barrett
From the Editor: Not everyone has the courage or good sense to take a discouragement and turn it into a victory. Doing so requires honesty, balance, and lots of hard work. The following article is the story of just such a journey. It first appeared in the Fall, 1995, edition of the Minnesota Bulletin, the publication of the National Federation of the Blind of Minnesota.
A familiar statement we Federationists often use is "Given proper training and opportunity, the blind can do the average job in the average place of business and do it as well as their sighted co-workers." I believe we often overlook those first three, vitally important, words--given proper training. Proper training in the alternative techniques of blindness is as basic to success for a blind person as learning to ride a bike is for a kid doing a paper route.
In June, 1993, I moved from Idaho to Minneapolis to take a job as an instructor at BLIND, Inc., our Federation adult training center in Minnesota. During my probationary period of employment, I received some training in alternative techniques at the Colorado Center for the Blind (CCB) and at our National Center in Baltimore. I did rock climbing for the first time with the CCB staff and students. I really enjoyed my experiences there, and with Mr. Cobb teaching me travel at our National Center, I also got the opportunity to know our hard-working leaders and staff at our National Center better.
However, by October my probationary period was over, and we all recognized that I was neither qualified nor confident enough to continue as an instructor and role model for the students at BLIND. I did not want to shortchange the students who were working hard to get the skills they needed and deserved for success.
What to do next? My wife Trudy and I and our six-year-old daughter Raeann had just pulled up roots in Idaho and moved to Minnesota. We were scared. But over the years I have come to believe that old axiom, "When the door closes, the Lord opens a window of opportunity." What about my going through BLIND, Inc., as a student?
I had taken some rehab training at the Idaho Commission for the Blind during the summers of 1975 and 1976 between years of school. That is where I met Trudy as a student in 1976. She had taken the comprehensive training for a year there with such Federation leaders as Frank Smith, Ray Martin, and Harry Gawith. Frank Smith had tried to get me to stay longer. But I was new in the Federation, and my parents did not recognize the greater importance of continuing training there rather than continuing straight through college.
Now I had a second chance, right in my backyard in Minneapolis. Trudy and Raeann were behind me all the way in taking that opportunity. I called Joyce Scanlan at BLIND. She thought intensive training would be of great benefit to me personally, and she helped me initiate the paperwork.
I signed up as a client of State Services for the Blind. I admit to being skeptical at first about the state agency because in the past I had been burned by counselors in the Idaho rehab system. However, Jon Benson was speedy and conscientious in setting up my program at BLIND, Inc. Dick Davis, Assistant Commissioner, State Services for the Blind, Department of Economic Security, was also supportive.
My sure, steady climb toward self-confidence began. In my nineteen years as a Federationist I had come to have great faith in the teachings of role models such as Dr. Jernigan, President Maurer, Norm Gardner, and Ramona Walhof. However, St. James was right in the New Testament when he said, "...faith without works is dead."
Here are some steps I took and several cherished experiences, which helped me to pat myself on the back and gain important self-confidence:
1. I left my sleepshade on. Yes there were times when I was annoyed by it, but I recognized that it was a necessary tool for me in achieving mastery of the alternative skills of blindness.
2. In Life Skills class, Pam Iverson motivated me to do Braille labeling at home and to keep a Braille check register. This was helpful to Trudy, too. I also started using a reader. (This was a struggle for me because I preferred taking a long time eyeballing my mail with my limited vision.) Now I use readers extensively and wouldn't be without them.
3. Russell Anderson taught me how to travel with greater confidence. I learned that I needed to trust my own perceptions while traveling and not my doubts. Jennifer Dunnam also taught travel, and one day we had to run to make a bus connection. When I (wearing my sleepshade) caught up with her, I told her I amazed myself by being able to do it. Then I added, "I don't know why I thought my sprint was so great, when you do it all the time as a totally blind person." We had a good laugh.
4. Betty Bishman gave me opportunities in Home Management class to learn how and why alternative techniques were used to accomplish daily tasks at home.
5. I had had some experience with speech software using IBM computers. Sharon Duffy taught me, not only more word processing techniques, but also that it was more efficient to rely totally on the speech program. I no longer needed to put my nose against the screen to double check what it said.
6. Before I entered training, I remember reading a Braille Monitor article by Jerry Whittle, who teaches Braille at the Louisiana Center for the Blind. His advice was to set a page goal to read every day and be sure to meet that goal. The idea was to increase one's speed; I took that goal to heart. Kathy Burnside encouraged me in making that goal and taught me slate skills. I also learned that reading can be fun. I used to strain to read large print. I used tapes, but there are times when it is handier and more enjoyable to sit back with the actual written word--print or Braille. When the Minnesota chill abated enough, I would read while waiting for the bus. Once I took my book with me and continued reading while having my teeth filled at the dentist's office.
7. In Careers class Dan Harman taught me how important good blindness skills are in getting and keeping a job. Viewing ourselves as equals and acting that way was expected.
8. In Seminar Joyce Scanlan, Director of BLIND, Inc., shared with me lessons she had learned about blindness. Sharing experiences with other students while Joyce guided us to evaluate them was of great benefit.
9. My favorite field trips included our three-day trip to the Amana Colonies in Iowa. When President and Mrs. Maurer visited BLIND, Inc., in February, they joined us snow tubing. Mr. Maurer treated us to hot chocolate after the hills, thrills, and spills. And in May I went rock climbing. As a kid I always liked Spider Man. Now I was the wall crawler wearing the sleepshade mask. It felt super reaching the top.
10. I took time out of training for a month to help with BLIND's summer Buddy Program. It boosted my confidence further (this was six months into training) to share my newly acquired skills with several eight- to twelve-year-olds.
I graduated from BLIND, Inc., in August, 1994. I count the experience as one of my best ever. I thank the good Lord for His blessings--my wife and daughter's support and the encouragement of BLIND, Inc., staff and students for making my experience fulfilling and applicable to my future. But I earned it. I learned to shrug off the bad travel days, tough computer classes, and interesting home management results as steady steps toward freedom. I had faith in my Federation philosophy coupled with my personal commitment to get there. I have made a pact with myself to keep using those skills daily.
If you believe that you need this crucial training, take an
honest, hard look at yourself. Embark on your own ascent toward a more capable,
[PHOTO/CAPTION: Barbara Pierce]
WHAT DO YOU THINK YOU ARE DOING?
by Barbara Pierce
From the Editor: The following address was delivered at
the Americans with Disabilities Act Preconference Seminar of the American Library
Association, June 24, 1993. I was asked to keynote the daylong seminar. The
presentations were gathered in a publication Library Buildings, Equipment, &
the ADA: Compliance Issues and Solutions, edited by Susan E. Cirillo and Robert
E. Danford. It has just appeared in print. Events like this seminar give us
an excellent opportunity to spread our philosophy and educate the public about
the normality of blind people. Here is the text of my remarks:
Before I begin my prepared remarks about achieving compliance with the spirit of the Americans with Disabilities Act, I would like to call your attention to a little-known section of the ADA, which sometimes looms very large for people with disabilities. It is Section 501 D. (I remember it as the 501 Don't Make Me Do It section.) It appears in Title V, Construction, and the heading is Accommodations and Services. The text reads: "Nothing in this Act shall be construed to require an individual with a disability to accept an accommodation, aid, service, opportunity, or benefit which such individual chooses not to accept." In other words, disabled people are protected from having to use modifications they find unnecessary or inappropriate. It does not mean that a blind person can refuse to use a cassette recording of an informational brochure, while continuing to demand a Braille one, but, if, for example, a library has designated a room for blind patrons to use with readers, it does protect their right to read silently in the regular reading room if they wish, and it certainly protects a deaf patron from being forced to use the separate room.
Such a provision may seem self-evident, but I assure you that already disabled people have found themselves in disputes about whether or not they can be forced by providers to use modifications and programs that they do not need or want. I believe that it is important to keep this provision of the ADA in mind as we turn to an examination of what impact the Act will have on you and the library patrons you serve.
I remember vividly the tiny public library that served the small Pittsburgh suburb in which I grew up. One climbed a rickety, narrow staircase to reach it--no one who used a wheelchair could have gained entrance, since an elevator had never been contemplated. As I remember the facility, there could not have been any more than three or four rooms of books, and the children's collection must have been quite inadequate. But my elementary school library was only one very small room, and, in addition to the good books, it housed lots of encyclopedias, dictionaries, and other boring resource books; so the much larger public library was infinitely more enchanting. The librarian sat at the desk, where all the library cards were filed, checked books out and in, and by her own stern decorum maintained the almost absolute silence required of everyone who dared to pass through those magical doors.
I should explain that while I was in elementary school my vision was rapidly deteriorating. I had had no difficulty reading the first grade primers, but as the print shrank in size and the pictures shrank in number, I found the physical act of reading more and more difficult and less and less pleasurable. But that did not diminish my enthusiasm for good stories. My parents continued to read to me, and sometimes I could even cajole my younger brother Bobby into galloping through a chapter or two of a book, if it wasn't too full of girls.
In any case, trips to the library were eagerly anticipated and carefully planned in our family because Mother had to take us by car. She almost always came in with us to help in book selection, guiding our choices as much as her prudence and our willfulness would allow. But one fateful week my brother was sick, and my mother had to stop at the drugstore to fill a prescription for him before she came up to help me choose a book for myself and several for Bobby, who was climbing the walls of his room with boredom.
Mother had questioned me closely about whether I felt secure going into the library alone to begin choosing books. I had no doubt about my ability to see the large titles on the book spines, and I had been in the children's room so often before that the idea of having trouble never crossed my mind. But, as I realize now, in the past I had always been there with my brother or mother, and the librarian had not felt any responsibility for me or concern about her collection while I was handling the books. As I entered the outermost room, which contained her desk, she was dealing with another patron, so I passed unaccosted into the children's room.
It seemed to me that those shelves of books reached almost to the sky. I was sure there were more books collected in that place than I could ever manage to read, and I pined to consume them all--even the ones about cowboys or knot-tying. Looking back, I'm not sure what the attraction was. The ones I liked best had such small print and so few pictures that I could not possibly have read them, but I could enjoy the brightly colored illustrations. As I riffled through their pages, pretending to read a line or paragraph here and there, the feel and smell of the books were positively intoxicating. I don't know how long I would have been content to browse along the library shelves, picking up a book, deciphering its title, glancing through it at the pictures, and conscientiously putting it back in the gap where it belonged.
I had never noticed how poor the lighting actually was, because always before Mother had been there to read titles and tables of contents. Now I was struggling to read the titles for myself, but I knew she would arrive soon, and I was still having a fine time and feeling very grown up. Then the librarian finished with the people at her desk, and she bore down on me with speed and unmistakable displeasure, even though I hadn't been making a sound and was returning the books to their exact places. With great indignation and no regard for the silence that was (according to the sign over her desk) to be maintained at all times, she demanded of me, "What do you think you are doing?"
Mercifully time and mortification have blotted out the rest of that painful scene. My mother must have rescued me from the lecture that followed her indignant question, and we surely returned home with a supply of books, but I am absolutely certain that I never set foot in that library again. With that one question the librarian had taught me several painful lessons: One, I was not welcome in her library or to handle her books unless my mother or little brother was there with me. Two, Holding the books close to my face in order to read their titles was somehow inappropriate. And three, my unchaperoned presence in the library was such an appalling interruption of decorum that the librarian had actually been driven to raise her voice.
If other patrons had been in the library--which thank Heaven they were not or my humiliation would have been even more shatteringly complete--they would have heard her accusations of me. For accusations they were. To have been asked the question, "What are you doing?" would have been bad enough because it would have implied the shameful suspicion that I had been doing something detrimental to a book or to the library, which would never have occurred to me. But instead I was asked, "What do you think you are doing?" The implication was clear--in her eyes I was not actually engaged in the same activity that occupied other patrons of the library. I was pretending; these books were not for me; I did not belong.
Did that poor librarian intend to communicate all this to a small girl who was in love with books but who could no longer read their print for herself? Probably not. She was undoubtedly uneasy at my independent appearance in her preserve and felt that she should do something, though she was not sure what. Perhaps she really was fearful that I would reshelve the books incorrectly, but, if so, I would not have been the first or last patron to do so. She clearly did not know what to do, and in her discomfort she chose an unfortunate way of articulating her willingness to help. That is the kindest construction I can place on her approach and on her question. If I am honest, however, I must admit that I am convinced there was an admixture of feeling on her part that I did not belong there--at least not without a keeper.
This incident took place more than thirty years ago, and much
in our society has changed during the intervening years. With varying degrees
of success we have come to recognize that community resources must be accessible
to members of minority as well as majority groups. People with disabilities
are only the most recent minority to win this recognition of our rights, but
complete access for us has been complicated by the presence of actual physical
barriers that often prevent it. If the parking is too distant, the door too
heavy or too narrow, the stairs unramped, or the counter too high, actual physical
access is truly and effectively denied to some people with disabilities. These
obvious physical barriers are simultaneously the most difficult and easiest
access problems to solve. Difficult because solving them can be expensive, and
persuading cost- conscious managers to spend money is hard these days. But easiest
because it is only one thing--money--that is at stake. When the appropriate
modifications are made, one kind of access, genuine and measurable, has been
However, the most fundamental, insidious barriers to full participation in community life for people with disabilities are the poor attitudes about disability held by most members of the general public, including some who are disabled themselves. The bad news is that attitudes based on ignorance and misconception and shaped by fear and pity are widespread, almost ubiquitous in society today. The good news is that, when it is possible to change these attitudes through education and exposure to sensible, competent people with disabilities, many of the access problems that seem to loom large shrink substantially or evaporate altogether.
The recently enacted civil rights legislation protecting disabled people and its implementing regulations are the subject of much discussion everywhere these days. I expect that much of the remainder of today's seminar will be spent in examining the issues raised by both the law and its regulations. But right now I wish to invite you to consider with me some ways in which attitudinal barriers, which keep disabled people out every bit as thoroughly as physical ones, can be dismantled and carted away. The first step, it seems to me, is for those who are trying to change attitudes in themselves and others to begin gathering accurate information. We in the disability community constantly live with and struggle to resist the presumptions of others. I had never considered the point before, but I suppose I should give some credit to that librarian in Bethel Park, Pennsylvania, for bothering to ask me a question at all. Many people do not. She did not, of course, expect or wait for an answer. In fact, too frequently people presume either that disabled people have no idea what we are doing or that we think we are doing something other than what we are actually doing.
One of my favorite examples of this phenomenon has occurred repeatedly to me as I walk down the street. I live in a small town in which it is possible to walk most places I wish to go. In fact, for years I walked to work at Oberlin College every day and popped out of my office to other places on campus for meetings and events. There is nothing tentative about the way I travel when I am walking somewhere on a schedule. Yet frequently drivers pull up alongside me< and, keeping pace, roll down a window to inquire, "Where are you trying to go?" Even the question, "Where are you going?" would be an intrusion on the privacy of another adult, which perfect strangers would not perpetrate against any but a blind traveler. Why does the driver presume that the outcome of my trip is in doubt? Why should this information or my plans be his or her business at all? If I were hovering around a corner in obvious hesitation, looking puzzled or distressed, it would be both kind and appropriate for a stranger to inquire whether help or information would be useful. But people see what they expect to see, and, if a pedestrian is using a long white cane, in the public mind he or she is necessarily in need of rescue.
That is an example of the sort of difficulty that arises for disabled people when a person acts on a presumption which is in turn based on ignorance and misconception. We are all capable of making such mistakes and should guard against them, or at least against acting on them, by seeking accurate information and drawing sensible conclusions from the available data.
Now let us turn to the actual question of achieving access for library patrons who happen to have disabilities. Instead of asking them the question, "What do you think you are doing?" I suggest that you ask this question of yourself. Are you attempting merely to comply with federal regulations? If so, your job is at least clear-cut. There are rules to follow and specifications to meet. Once you have done that, your job is complete. You will be safe from lawsuits, but don't be surprised if your facility does not attract many of the people for whom the modifications were made, for they will soon discover that, though the physical barriers are gone, the attitudinal ones are intact.
But if, as I hope and believe, your true goal is to make disabled people genuinely welcome in your library, your efforts to comply with the Americans with Disabilities Act will not stop with removing the physical barriers. A broader vision of equal access is what advocates of the ADA had in mind when they worked for its passage. And where better, more appropriate for this broader concept to take root than in the nation's libraries? Libraries are still the jumping- off point for people with hopes and dreams, the repositories of our understanding of freedom and justice. And who better to set the equal-access agenda in the months and years ahead than librarians, the keepers of that flame?
The physical requirements of the ADA can be learned and implemented, but beneath or perhaps beyond the regulations lie common sense and good will, the intention to achieve equality. Whether we look back on this decade and admit that institutions of various kinds settled for complying with the letter of the Americans with Disabilities Act or say with pride that they embraced its spirit will depend on people like you.
Obviously I hope that people in positions of responsibility will take this opportunity to encourage a change in attitude: their own, their colleagues', the public's, and that of disabled people. A good place to begin is to help library staff members become more comfortable in the presence of people with disabilities. You might invite people in your community who have disabilities of various kinds to form an advisory committee, temporary or permanent, depending on the complexity of your program. Bring them and the staff together to discuss constructive modifications, changes that members of the disabled community recognize as important or necessary and that are possible to undertake. Committee members can also do inservice training for library staff members. Many of the things your colleagues do not know are painfully obvious to would-be patrons with disabilities:
A person seated in a wheelchair cannot conveniently check out a book at a high desk. But the desk doesn't have to be replaced immediately; just place a table and chair beside it so the staff member on duty can sit down and be at the same level as the seated patron.
Because there are many degrees of vision loss, patrons may well be capable of using the large- print collection and certainly can use the commercially recorded cassette book and music collections without being able to spot and read library signs, even the large-print ones now mandated by the ADA. Their inquiries should not be responded to with vague gestures or directions like "Over there behind the woman in the green sweater." Learning to give helpful directions takes a little practice, but it is not hard once staff members get over the panic of realizing that the person facing them cannot necessarily see the usual landmarks.
No one in the disability community expects people to know instinctively what is appropriate, even necessary. We are well used to articulating our requirements and preferences. There are as many differences among us and our abilities as there are in any other cross section of society. We do not expect you and your staff to read minds, but it would be very helpful if you could persuade library personnel to ask questions when they are not certain what to do. Actually, that part is not particularly difficult; it's the second step that's tough--getting them to listen to the answers and be guided by them. It is frustrating (and embarrassing to both parties) to ask for directions to a public telephone and in response be dragged to the ladies' room.
Ideally the aim should be to treat disabled adults as adults until and unless by their behavior they indicate that more custodial treatment is appropriate. If a person using a white cane enters your library and asks for directions to the reference desk, simply provide the information requested. That's what you would do for a sighted patron. If the person seems uncertain and if you or someone else is free to do so, you might offer to accompany him or her. But if the person says that the instructions are clear and starts in the correct direction, you should not insist on walking along or following to see that nothing happens. There is no reason to call the reference desk to warn your colleague to watch for a blind person. I can assure you that there are few things more unnerving than trying to follow a set of directions while someone is trailing along behind, gasping every time the long cane touches an object, and grabbing at one's arm or waist every time the observer fears that something may go wrong.
By the same token, you should not put up with behavior from a disabled patron that you would find unacceptable from an able-bodied one. Let me be clear. Under some circumstances modifications of library policy should be worked out if possible in order to make a particular collection available to a disabled patron. For example, a blind person with a reader will necessarily make a little noise in reading material that must be used in the building. It would be considerate to everyone to assign the pair a distant corner or small room for reading. Likewise, it may be necessary to rearrange the chairs at a table in order for a person who uses a wheelchair to work there in comfort. But it is not reasonable for a blind patron to expect that a librarian can stop his or her assigned tasks to provide expended reading services. The test is, how much time would the librarian spend assisting another patron who needed help?
It is reasonable and appropriate to refuse to provide some kinds of assistance even when the refusal results in inconvenience to the disabled person. No one gains anything in the long run if people with disabilities are encouraged to take advantage of other people's good will or sense of pity simply because of a disability. Assistance-dog users, for example, should be required to keep their animals close to them and under control. Dogs should not be allowed to sprawl in the aisle, forcing other patrons to step over or around them. It is also inappropriate for dog users to ask others to take their dogs outdoors to a relief area.
It is easy for me to stand here and tell you that there are times when it's appropriate for your staff to bend established rules and times when it isn't necessary to do so. But people find it hard to distinguish between such situations unless they have the opportunity to discuss these matters with sensible disabled people.
So I come back to the concept of the advisory committee. Not only will you begin to understand the difference between appropriate services resulting from an effort to provide reasonable accommodation and those being requested by disabled people who have done poor planning or who are simply self-indulgent, but you will also find yourself with an excellent conduit for spreading the word among disabled people that the library staff are genuinely trying to make all patrons feel welcome to use this community resource. All this will take time. We have been kept down and out for a lot of years. The message that we were not welcome was clearly given and just as clearly received. Habits of thought and patterns of action take time to change.
What do you think you are doing? If
you are making room for everyone in your community who wants to use the library,
regardless of disability, you can succeed. It will require everyone, staff and
patrons alike, to change some attitudes. Broadening horizons and expanding awareness
always require such adjustments. But surely the results are worth the effort.
[PHOTO: There are two pictures with this story. The first is a sign reading "Medieval Times Dinner and Tournament." The second shows eight knights on horseback. The horses are fully caparisoned, with richly decorated cloth that matches the standards which the knights are holding. The knights, who are wearing chain mail and helmets with feathers streaming from them, are holding shields bearing the same insignia as their clothing and the standards. CAPTION: The knights at Medieval Times in full regalia]
by Jim Willows
From the Editor: Jim Willows is President
of the National Federation of the Blind of California. In this article he provides
you with the information you will need to make your plans for tours during the
convention. Please note
that the deadline for making these arrangements is May 3, and orders will be
filled on a first-come-first-served basis. No tour tickets will be for sale
at the convention unless there happen to be unfilled seats still available,
so read the following information carefully and make your plans now. Here is
what Jim has to say:
We believe we have tours to suit all tastes, tours that will show off the fun and beauty of Southern California. And, thanks to our friends at Singer Travel of Baltimore, we can provide these tours at very reasonable rates.
The first three tours listed (Knott's Berry Farm; Universal Studios Hollywood; and the Los Angeles City Tour and the Homes of the Stars) will take place on Wednesday afternoon, July 3, 1996.
The next two tours (the Medieval Times and Los Angeles and Hollywood by Night) will occur Wednesday night, July 3, 1996.
The final tour, to Catalina Island,
will complete your convention on a delightful note. Plan to stay over an extra
day or two to enjoy this tour on Saturday, July 6, 1996.
Knott's Berry Farm
Price includes transportation to and from our hotel, $32, adult; $22, child (three to eleven); and $19, senior citizen (sixty-five and up). The tour leaves the hotel around 1:00 p.m. with various return times.
The nation's first and most popular independently-owned entertainment park, Knott's is 150 beautifully landscaped acres of fun for the entire family with authenticity as the hallmark. All of the theme areas share the same vital ingredient--the opportunity to enjoy and experience the history, heritage, and culture of an era. Experience the Old West in the very alive Ghost Town or the high energy excitement of Fiesta Village. Enjoy the magic of a visit to the fun of the 1900's recreated in the Roaring 20's area.
Enjoy the magic of a visit with the Peanuts
gang in Camp Snoopy. Go back to the turn-of-the-century California wilderness
in the Wild Water Wilderness area. Celebrate the arts, cultures, and traditions
of Native Americans in the newest theme area, Indian Trails. Knott's also offers
live entertainment, one-of-a-kind shops, and world-famous food.
Universal Studios Hollywood:
Price includes transportation to and from our hotel: $53, adult; $40, child (three to eleven). The tour leaves the hotel around 1:00 p.m.; we will try to work out varied return times.
Universal Studios Hollywood, the world's first motion picture and television-themed attraction, is the original behind-the-scene look at the film and TV industry.
During nearly thirty years Universal Studios Hollywood has become the master of presenting movies three-dimensionally and has brought over seventy-five million guests onto the famed Universal lot, where some of history's greatest motion pictures and television shows were produced and continue to be filmed.
With such highlights as "Back to
the Future," "The E.T. Adventure," "King Kong," "Earthquake--The
Big One," "A Tribute to Lucy," "The Star Trek Adventure,"
and "The Wild, Wild, Wild West Stunt Show," Universal Studios Hollywood
is located in Universal City, the only city dedicated to the art of motion pictures.
Universal Studios Hollywood is the biggest and busiest movie and television
studio in the world.
Los Angeles City Tour and Stars' Homes:
Price includes transportation to and
from our hotel: $36, adult; $28, child (three to eleven). The tour lasts approximately
four hours. It includes Sunset Strip with stops at the famous Chinese Theater
and Hollywood Bowl. In Beverly Hills and Bel Air you will see the dazzling homes
of the stars. Experience the glamour of Rodeo Drive and stop to browse in its
shops. Also included is a drive through the world-renowned UCLA campus and Westwood
Village and a stop at Farmer's Market.
The following two tours will take place
on Wednesday evening, July 3, 1996.
Price includes transportation to and from the hotel: $37, adult; $26, child (three to eleven). The tour lasts approximately three-and-a-half hours.
Medieval Times combines the fun of a sporting event with the enjoyment of a gourmand, if not of a gourmet. We will sit around a large arena watching knights jousting on horseback and participating in other medieval tournament events while we feast in the medieval style, digging into the food by the handful.
We will sit in one of the six sections,
each identified by a color, and cheer for the knight wearing our color. This
might be more fun than rooting for the Dallas Cowboys. Medieval Times is located
just a few minutes from the hotel, so you can take this tour and still get back
to enjoy Casino Night at the Hilton.
Los Angeles/Hollywood by Night:
Price includes transportation to and from the hotel: $35, adult; $28, child (three to eleven). The tour lasts approximately six hours.
During your visit to Anaheim, be sure
to tour Los Angeles. After dark, Los Angeles truly comes to life. Share in the
excitement of downtown and the Music Center. Atop the Griffith Park Observatory
explore the exhibits of our universe and the breathtaking lights of the sprawling
city. Sample the neon night life as you cruise along Hollywood Boulevard and
the Sunset Strip, stopping at the legendary Chinese Theater. Glamour and style
await you in the chic setting of Beverly Hills and the exclusive shops of Rodeo
Drive. Next door awaits Century City, a space-age high rise development of famous
hotels and entertainment centers. The last tour occurs on Saturday, July 6,
1996. Don't miss it.
Price includes transportation to and from the hotel: $59, adult; $47, child (three to eleven). The tour lasts approximately ten hours. Take a quick trip across the blue Pacific to arrive in an island paradise. Enjoy the first-class service aboard the newest vessels of the Catalina Express. Catalina, a sun-drenched island, is a few miles off the coast of Southern California and beckons visitors with its sandy beaches and the variety of its wildlife.
You are on your own to discover the charm of Catalina. Explore the wonders of undersea life in modern glass bottom boats; tour the city botanical garden. Choose from a variety of shopping and dining opportunities, and visit the Wrigley Memorial.
We must have your tour ticket orders in hand by May 3, 1996. Ticket orders will be filled in strict first-come- first-served sequence. To order by mail, send your check or money order immediately to Singer Travel, NFB Convention Tours, St. Thomas Shopping Center, 9944 Reisterstown Road, Owings Mills, Maryland 21117. Include in your order your name, address, daytime telephone number, name of tour or tours, and number of tickets for each tour. Payment in full must be included for all tour tickets. No orders will be taken by telephone.
You must order your tour tickets in advance. Additional tickets will be available at convention only if last-minute cancellations have made space available. Tickets sold in Anaheim will almost certainly be more expensive than the prices listed here.
NFB of California members look forward to seeing you at our 1996 NFB Convention in Anaheim. We know you will enjoy these tours.
We have another event planned for the first Saturday evening of the convention, June 29, 1996. This is "Saturday Night at Disneyland." We will get group-rate tickets for Disneyland. This ticket admits you to the park and is good for all rides and events.
Details of this exciting opportunity
will appear in the April issue of the Braille Monitor. At this writing
Disneyland has not yet set its summer group rates, but these rates have always
been at least 30 percent below the regular admission price. So get ready for
fun in Southern California at the most interesting and exciting gathering of
blind people to take place in 1996--the fifty-sixth annual convention of the
National Federation of the Blind.
This month's recipes were submitted
by members of the NFB of Rhode Island.
[PHOTO/CAPTION: Richard Gaffney]
RHODE ISLAND QUAHOG CHOWDER
by Richard Gaffney
Our first recipe is a favorite of most Rhode Islanders, especially
the family of our former President Richard Gaffney. It was handed down from
his mother. Since Richard comes from a large family, this recipe will feed twenty
people, so plan accordingly. Quahog (pronounced "co-hog") is a term
handed down to us by native Americans from this area. In most places it is called
a hard-shell clam.
1 quart minced quahogs
10 pounds potatoes (peeled and diced)
1 large onion, chopped
2 cans tomato soup
Method: In large pan combine quahogs with their juice,
potatoes, and onion. Cover with water. Cook on high until mixture boils. Stir
occasionally. Add tomato soup. Cook over medium heat until soup comes to a boil
again and reaches desired thickness.
by Ruth McGarrity
Originally this recipe came from our former Vice President,
the late Ruth McGarrity. She served it at a picnic several years ago and then
passed it on so many other members and their families could enjoy it.
3 cups zucchini, cubed
1 teaspoon salt
1 teaspoon pepper
1 teaspoon oregano
1 medium onion, chopped
« cup grated cheddar cheese
1 cup Bisquick
« cup salad oil
Method: Place all ingredients except eggs and oil in
greased casserole. In another bowl beat eggs and oil and pour over zucchini
mixture. Bake at 350 degrees for one hour.
BEAN AND RICE CASSEROLE
by Mary Jane Fry
This recipe was submitted by Mary Jane Fry, our recording secretary.
She says this recipe is a great substitute for meat. It has lots of protein
and is good with either soup or a salad.
1 medium onion, finely chopped
1 clove garlic, peeled and crushed
2 tablespoons vegetable oil
2 tomatoes, peeled and chopped (or 1 can stewed tomatoes)
1 green pepper, finely chopped
2 cups cooked or canned kidney beans
1 cup long-grain rice
2 cups water
salt and pepper to taste
Method: In a heavy casserole, saute the onion and garlic
in the oil until soft and transparent. Add tomatoes and green peppers and then
cook and stir until mixture thickens. Add beans, rice, water, salt, and pepper.
Stir occasionally, then cover and let simmer for twenty minutes till rice is
cooked and all the water is absorbed. Rice should be fluffy and dry. Serves
[PHOTO/CAPTION: Kenneth Brackett]
by Kenneth Brackett
Kenneth Brackett is a long-time member of the NFB of Rhode
Island. He has served as President as well as in other positions through the
past twenty-five years. Another passion of Ken's is cooking, as you will see
in the following.
1 package active dry yeast
1¬ cups warm water (105 to 115 degrees)
2 tablespoons shortening (may use margarine or butter)
2 tablespoons sugar
2 teaspoons salt
2 cups all-purpose flour
Method: In a large bowl dissolve yeast in warm water,
add shortening, sugar, salt, and 2 cups flour. Blend well, adding the remaining
flour a little at a time while scraping the bowl. Let it rise for about thirty
minutes, punch down, and place in a bread pan. Let it rise again for about forty
minutes or until double in size. Bake at 375 degrees for about forty-five minutes
or until loaf sounds hollow when tapped.
by Kenneth Brackett
2 cups sugar
1 cup salad oil
1 teaspoon vanilla
2 cups flour
2 teaspoons baking powder
2 teaspoons cinnamon
1« teaspoons baking soda
2 cups carrots, shredded and lightly packed
1 8-ounce can crushed pineapple
« cup walnuts, chopped
Method: Preheat oven to 350 degrees. Grease and dust
with flour a 9 by 13-inch pan. In a medium bowl stir together sugar and oil.
Beat in eggs one at a time. Stir in vanilla, flour, baking powder, cinnamon,
and baking soda. Add carrots, pineapple, and nuts. Stir batter only enough to
blend. Pour into prepared pan. Bake for forty-five minutes or until wooden pick
inserted in center comes out clean.
GERMAN SWEET CHOCOLATE CAKE
by Jean Humphries
Jean Humphries is the aunt of Barry Humphries, the affiliate
president. Barry says that he and his family have enjoyed this delicious cake
on numerous occasions.
4 ounces Baker's German sweet chocolate
« cup boiling water
1 cup butter or margarine
2 cups sugar
4 egg yolks
1 teaspoon vanilla
2« cups cake flour, sifted
1 teaspoon baking soda
« teaspoon salt
1 cup buttermilk
4 egg whites, stiffly beaten
Method: Melt chocolate in boiling water. Cool. Cream
butter and sugar until fluffy. Add yolks one at a time, beating well after each.
Blend in vanilla and chocolate. Sift together flour, soda, and salt. Add alternately
with buttermilk to the chocolate mixture, beating after each addition until
smooth. Fold in beaten egg whites. Pour into 3 8- or 9-inch layer cake pans,
lined on bottom with greased and floured wax paper. Bake at 350 degrees for
thirty to forty minutes. Cool before frosting.
COCONUT PECAN FROSTING
1 cup evaporated milk
1 cup sugar
3 slightly beaten egg yolks
« cups butter or margarine
1 teaspoon vanilla
1« cups Baker's Angel flake coconut
1 cup pecans, chopped
Method: Combine evaporated milk, sugar, egg yolks, butter,
and vanilla. Stir mixture to blend well. Cook stirring over medium heat until
frosting thickens (about twelve minutes). Add 1« cups Baker's Angel flake coconut
(if desired) and 1 cup chopped pecans. Cool until frosting is thick enough to
spread. Beat occasionally. Makes two and a half cups.
[PHOTO/CAPTION: Joanne Wilson]
Joanne Wilson Honored:
The following brief notice appeared in the Fall, 1995, Path Finder, the publication of the National Federation of the Blind of Louisiana: Joanne Wilson, Director of the Louisiana Center for the Blind and President of the National Federation of the Blind of Louisiana, was presented with the prestigious Distinguished Service Award in Rehabilitation at the South Central Regional meeting of the Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER).
Citing Ms. Wilson's numerous accomplishments in the field of
rehabilitation, including initiating and developing innovative training programs
for both blind adults and children, AER recognized her many years of tireless
service to the nation's blind by honoring her at the South Central meeting in
Memphis, Tennessee, on October 7, 1995. Martha Simmons, winner of the 1994 NFB
of Louisiana Outstanding Educator of the Year Award, was on hand to accept the
award for Ms. Wilson, who was unable to attend the meeting because of previous
commitments elsewhere. "She certainly deserves this award. No one has worked
any harder than Joanne to improve rehabilitation services in Louisiana, and
her work has affected blind persons from all over the country," Ms. Simmons
said. Congratulations to Joanne Wilson.
We have been asked to carry the following announcement:
Colorado Trakker Jumbo-350 external tape backup system for sale. Connects to your computer through the parallel port. Has a pass-through port feature for printer connection. Transfer rate is 5 to 8 megabytes per minute. Capacity is 350 megabytes per tape cartridge. Software works well with all speech programs. Comes with power adaptor, connection cable, and three tape cartridges. Asking $350. I am willing to trade for Perkins Brailler in fine condition. Payment plan is negotiable for a cash sale. Also available, original DOS Version 6.3 with manuals still in the box. Asking $25.
Interested in earning some extra cash? I am looking to purchase
some Perkins Braille Writers. Look deep into those hidden places. If you have
a Perkins Brailler that you would like to sell (working, non-working, some parts,
or all together), contact Nino Pacini (evenings and weekends only) at (303)
Airfare Discounts Available for the National Convention:
We have made arrangements through Singer Travel--that is, reservations
must be made with Singer--for a 5 percent discount off the lowest available
air fare at the time the reservation is made on American or United Airlines.
This discount applies for travel to both Los Angeles International Airport (thirty-one
miles from Anaheim) and John Wayne Orange County Airport (sixteen miles from
Anaheim). Our discount fare is available for travel originating in the contiguous
forty-eight states, Hawaii, Puerto Rico, and Canada. To make reservations through
Singer Travel, Owings Mills, Maryland, call (410) 363-3039 or (800) 248-3928.
To qualify for the discount, identify your travel as for the NFB Convention.
The Pompano Beach Chapter of the National Federation of the Blind of Florida held its election on November 11, 1995.
The following officers were elected: Thomas P. Ryan, President;
Denise Shaible, Vice President; Adam Shaible, Secretary; and Deborah A. Ryan,
Treasurer. Shirley Smart, Eileen Brown, and Joe Davis are the new Board members.
Past President Ronald L. Burns and his wife Audrey, long-time Federationists,
have moved to Tulsa, Oklahoma, where they expect to remain active in that NFB
Braille Transcription Services Available:
We have been asked to carry the following announcement:
Do you need something put into Braille for your group, business,
agency, professional organization, or personal use? Contact Maureen Pranghofer
at Hidden Gifts. Maureen has all the necessary technology to provide quick,
high-quality Braille transcription. Cost is $10 per hour. For more information
contact Hidden Gifts, 4910 Dawnview Terrace, Golden Valley, Minnesota 55422,
(612) 522-2501 for all your Braille-transcription needs.
We have been asked to carry the following announcement:
I have for sale a Kurzweil Personal Reader, Model 7315, with
latest upgrade, all manuals, hand scanner, and automatic scanner. Depending
on location and schedule of buyer, may be possible to provide installation and
training. Price--$2,500. Contact Harold Snider at (301) 460-4142.
Deaf-Blind Census in Illinois:
Steve Benson, President of the National Federation of the Blind of Illinois, recently provided us with the following information:
Springfield, Illinois, November 14, 1995--The Illinois Department of Rehabilitation Services (DORS) today released the Illinois' 1995 Deaf-Blind Census Report, which lists the total number of Illinoisans who are deaf-blind at 5,624.
This total reflects a 300 percent increase in that population's count from the 1990 census. The new census, conducted earlier this year with assistive identification efforts, identified an additional 3,756 people who are deaf-blind, with ages ranging from younger than one year to 111 years old. The 1990 count identified 1,868 people who are deaf-blind. "We knew in 1990 that the census count was low," said Audrey McCrimon, DORS Director. "By coordinating several state agencies as well as private-sector service providers, especially nursing homes, we implemented the most thorough deaf-blind census to date."
Chuck Murphy, Chairman of the Interagency Agreement Committee (IAC), which conducted the survey, said, "I am very pleased that all of IAC's hard work has more than paid off. It is important that Illinois continue to work on maintaining an even more accurate census of the true number of our fellow citizens with a hearing and vision impairment."
The IAC 1995 Deaf-Blind Census also found:
* 62 percent of the deaf-blind population (2,562 people) is age sixty or older.
* 79 percent of people who are deaf-blind and age sixty or over live in nursing homes.
* 18 percent of the state's total deaf-blind population lives in Cook County.
* 51 percent of people who are deaf-blind between the ages of twenty-two and fifty-nine live at home.
* There are 135 infants (birth to three years) who are deaf-blind.
* There are 591 school-age children who are deaf-blind.
* Between ages twenty-one and sixty, there are 977 persons who are deaf-blind.
* 2.8 percent of the deaf-blind population is being served by more than one agency.
(Some respondents did not report age or county of residence.)
Members of the IAC include representatives of DORS, the Department of Mental Health and Developmental Disabilities (DMHDD), Department on Aging (DOA), Department of Children and Family Services (DCFS), Department of Public Health (DPH), Department of Public Aid (DPA), Illinois State Board of Education (ISBE), Philip J. Rock Center (PRC), and Division of Specialized Care for Children (DSCC). Deaf-blindness is defined as a combination of hearing and vision loss that significantly affects a person's daily activities.
The census report is available by contacting the Illinois Department
of Rehabilitation Services (DORS), 623 East Adams, Springfield, Illinois 62794-9429,
or by calling (217) 785-9304 (V/TTY).
On Saturday, September 23, 1995, the Milwaukee Chapter of the
National Federation of the Blind of Wisconsin held its annual election. The
newly elected officers are Vern Lind, President; William Meeker, Vice President;
Sheila Koenig, Secretary; and Cheryl Orgas, Treasurer. New Board members are
Mike Hall and JoAnn Braun.
Jim Willows, President of the National Federation of the Blind of California, has written with sorrow to report the death of Lynn Brooks, a loyal and active California Federationist for many years. Lynn died of cancer on December 20, 1995, after battling the disease for many months. He continued teaching until just a few weeks before his death, and he presided at our Napa Valley Chapter meeting in late November. Lynn was a real fighter for our cause.
Lynn was a founding member of the Napa Valley Chapter of the
NFB of California. He served as President of that chapter off and on for the
past thirty years. Lynn and his wife Gwen rarely missed either a state or national
convention. In addition to his state and local activities, he was active for
many years in the National Association of Blind Educators. Lynn Brooks taught
several subjects for more than thirty years at Napa Valley High School. He was
also the school wrestling coach for the last fifteen years of his life. In addition,
he taught at his local community college. Lynn Brooks will be sorely missed
by all of those who knew him.
Order Forms Available:
Did you know that the NFB Materials Center at the National
Center for the Blind offers a variety of order forms? The descriptive aids and
appliances order form is a list of over 200 aids. Items include white canes,
slates, paper, Braille watches, talking clocks, medical and diabetic devices,
and games. This catalog is available in both large print and Braille. The literature
and materials catalog (also in large print and Braille) includes more than 800
articles, available free in various formats, on various blindness-related topics.
All of our books, videos, and souvenir items are included as well. We also have
several specialized order forms: Selected Literature for Blind Youth, Braille
Storybook Resources, Magazine Order Form, and That the Blind May Read
video order form. Selected Literature for Blind Youth is a list of articles
that have special appeal to blind youth, teachers, and parents. Braille Storybook
Resources is a list, updated annually, for sources of storybooks in Braille.
The Magazine Order Form is a flyer which describes all of the publications available
from the National Federation of the Blind and the formats offered. It includes
a subscription form. Finally, the order form for That the Blind May Read
is a description of this excellent Braille literacy video and a clip-off order
form. There is no charge for any of these publications. You may order these
catalogs by writing to Materials Center, National Center for the Blind, 1800
Johnson Street, Baltimore, Maryland 21230.
New Business Opportunity Available:
We have been asked to carry the following announcement:
A hot new trend is sweeping America! The prepaid telecard has
recently replaced outdated calling cards in Japan and Europe. In Europe pre-paid
technology is a whopping 4 billion dollar market. Now, because of a new company,
TeleSales, Inc., it is possible for you to cash in on the wide-open market in
America and enjoy unlimited long-distance calling for yourself, all for a one-time-only,
$100 refundable start-up fee. Nothing more to pay. The fee brings you your first
hour-long calling card and a start-up kit for beginning your own in-home business.
For more information about this opportunity, call Federationist Leonard Shije
at (800) 713-2212.
On November 18, 1995, the Erie County Chapter of the National
Federation of the Blind of Pennsylvania elected the following: Connie Johnson,
President; Mark Zink, First Vice President; Mindy Gunns, Second Vice President;
Randy Davis, Secretary; and Jean Thompson, Treasurer.
[PHOTO/CAPTION: Steve and Nadine Jacobson with new big sister Elizabeth]
New Baby Adopted:
Monitor readers will remember the story in the December, 1995,
Monitor titled "Loving Elizabeth." It was an account of Steve
and Nadine Jacobson's struggle to adopt their daughter Elizabeth. Now Steve
and Nadine, who are members of the NFB of Minnesota, have written to announce
the adoption of their new, seven-month-old daughter, Catherine Angela. Congratulations
to all the Jacobsons.
The New Britain Area Chapter of the National Federation of
the Blind of Connecticut held its election in November, 1995. New officers are
Jackie Doucette, President; Rev. James Foxworth, Vice President; Diane Meyer,
Secretary; and W. Van B Hart, Treasurer. Kathy Robertson, Helen Kaminski, and
Richard Violette are new Board members.
New Catalog Available:
We recently received the following press release:
The most up-to-date listings of all recorded and computerized books available from Recording for the Blind and Dyslexic (RFB&D) are listed in the new 1996 RFB&D Catalog of Books, which is now available.
The catalog incorporates several new features, such as an improved subject reference, easy-to-use instructions, and title/author index. These changes were requested by librarians, RFB&D borrowers, and others who use the catalog to order taped books.
The catalog, which contains listings of the nearly 80,000 recorded and computerized texts in RFB&D's C.V. Starr Master-Tape Library, comes in two editions. The Adult Collection includes listings of books from the college level and beyond, including texts for professionals. The Juvenile Collection includes listings of books from elementary grades through the high school level.
New features are incorporated into both collections and include:
* Book entries grouped by subject based on the Dewey Decimal Classification system.
* A subject and author index in the back, making it easy to look up the shelf number of books before ordering.
* Instructions on how to order from the catalog presented in a question-and-answer format, with examples set apart.
Both volumes also contain complete listings of the products and services RFB&D offers blind and dyslexic borrowers. The complete set, which includes both collections, is $69.95 (plus $8.50 shipping and handling within the U.S.).
Each edition can be ordered separately. The Juvenile Collection is $29.95 (plus $7.50 for shipping and handling), and the Adult Collection is $49.95 (plus $8 for shipping and handling). They can be ordered by calling RFB&D at (800) 221-4792.
To supplement the print version of the Catalog, RFB&D offers
subscriptions to its Quarterly Disk Catalog (QDC) and its Quarterly Recorded
Catalog for $16 each. These updates contain listings of the most popular new
audio and E-Text titles added to the Master-Tape Library each quarter.
Greg Trapp has asked us to carry the following announcement:
This coming May I will be spending two weeks in Ghana as a faculty member with Joni and Friends, which is the disability ministry of Joni Aereckson Tada. We will be delivering wheelchairs to the disabled, and I also plan to deliver a quantity of NFB white canes. Blindness is very common in Africa, and it is my hope that this small effort will help to better the lives of the blind in the nation of Ghana. If you would like to support this effort through financial contributions or gifts of canes or other blindness-related materials, please contact Greg Trapp at (505) 256-3100 during the day or (505) 266-4016 during the evening. You may also write to me at 1330 Louisiana Boulevard, N.E., #410, Albuquerque, New Mexico 87110.