[NFBNJ] NFBNJ: The Sounding Board, Fall 2018
Brian Mackey
bmackey88 at gmail.com
Fri Oct 5 18:40:08 UTC 2018
>From the desk of NFBNJ President Joe Ruffalo.
Received from Kathy Gabry, Editor, The Sounding Board.
Greetings to all!
Please read and share the fall issue of the Sounding Board, the publication of the National Federation of The Blind of New Jersey.
I have provided comments from Kathy Gabry, editor. She highlights the importance of our members to offer submissions and we thank you.
She also thanks the co-editors for their time, effort and support to provide an educational, motivational and inspirational issue. Take the words and make them become your action!
***
From: Kathy Gabry
Dear Editorial Team,
I heard from Joe tonight. The magazine is ready to distribute.
I must say, with all honesty, this is one of the issues that has really touched my heart. The articles are reflective, honest, genuine - folks really bared their souls. I can feel their emotion. I hope you can, too.
A deep and warm thank you to each of you for contributing to this issue. Because of each of you, the quality of this magazine is second to none.
I'll leave it to Joe to inform us of the number of days til the next edition (yikes!). Til then, I hope you have a wonderful fall and upcoming holiday season with those whose company you enjoy.
With thanks and lots of respect for each of you,
Kathy
PS: I would like to recommend a few articles to Gary Wunder for reprinting in the Braille Monitor:
Ellen Sullivan's Fund Raising, perhaps Carol Thomas's Convention with an AP, and Brian Mackey's leadership training.
Please let me know your thoughts re these and/or others.
***
FALL 2018
The Sounding Board
The Publication of the National Federation of the Blind of New Jersey
In This Issue
Connor Mullin, Jonathan Zobek,
Katie Maunder & Carol Thomas
Report on their
2018 National Convention experience
Bea Oliveti
Tells what the NFBNJ means to her in our new column Why get involved?
Linda Melendez
Discusses the many activities of the Sports & Recreation Division
Ellen Sullivan & Brian Mackey
Share successful grant-writing strategies
Live the Life You Want
THE SOUNDING BOARD
Fall 2018
Katherine Gabry, Editor
Annemarie Cooke, Mary Jo Partyka & Barbara Shalit, Co-editors
Mark Gasaway, Guest Co-editor
Barbara Shalit, Advertising Manager
Published by e-mail and on the Web through Newsline by
The National Federation of the Blind of New Jersey
<http://www.nfbnj.org> www.nfbnj.org
Joseph Ruffalo, President
State Affiliate Office 254 Spruce Street Bloomfield, NJ 07003
E-mail: nfbnj1 at verizon.net <mailto:nfbnj1 at verizon.net>
All articles should be submitted to the State Affiliate Office at nfbnj1 at verizon.net <mailto:nfbnj1 at verizon.net> and specialk38 at aol.com <mailto:specialk38 at aol.com> . Advertising rates are $25 for a half page and $40 for a full page. Ads should be sent to barbart at tullensound.com <mailto:barbart at tullensound.com> . The editorial staff reserves the right to edit all articles and advertising for space and/or clarity considerations.
Please Note: The deadline for the Spring issue is March 15, 2019.
Donations should be made payable to the
National Federation of the Blind of New Jersey
and sent to the State Affiliate office.
To subscribe via Newsline: Jane Degenshein 973-736-5785 or Jdegen16 at comcast.net <mailto:Jdegen16 at comcast.net>
DREAM MAKERS CIRCLE
Help build a future full of opportunity for the blind by becoming a member of the Dream Makers Circle. Your legacy gift to the National Federation of the Blind can be made in the form of a will or a living trust, an income-generating gift, or by naming the NFB as a beneficiary of a retirement plan or life insurance policy. You can also become a member of the Dream Makers Circle by making a legacy gift to the National Federation of the Blind of New Jersey. By committing to support the NFB, your gift will benefit both local and national programs, since all bequests made to affiliates are split evenly with the NFB national treasury. In addition to having the satisfaction of contributing to the future success of the NFB's mission, Dream Makers Circle members also receive a specially designed thank you gift and other benefits. For additional information, please contact Patti Chang at the NFB Jernigan Institute by e-mail at pchang at nfb.org <mailto:pchang at nfb.org> , or by telephone at 410-659-9314, extension 2221.
Mission Statement
The National Federation of the Blind of New Jersey, Inc. is an organization of blind and interested sighted people who plan and carry out programs; work to improve the quality of life of the blind; provide a means of collective action for parents of blind children; promote the vocational, cultural and social advancement of the blind; achieve the integration of the blind into society on a basis of equality with the sighted; and take action that will improve the overall condition and standard of living of the blind.
The National Federation of the Blind knows that blindness is not the characteristic that defines you or your future. Every day we raise the expectations of blind people because low expectations create obstacles between blind people and our dreams. You can live the life you want; blindness is not what holds you back.
The National Federation of the Blind Pledge
I pledge to participate actively in the efforts of the National Federation of the Blind to achieve equality, opportunity and security for the blind; to support the programs and policies of the Federation; and to abide by its constitution.
The Sounding Board
The Sounding Board is the magazine of the National Federation of the Blind of New Jersey. It is published twice a year. Our hope is that through The Sounding Board, our members can keep current with local, state and national news, and issues of concern. We also aspire to provide a source of hope, inspiration, pride and camaraderie through the personal stories in our publication.
Hundreds of readers receive our publication via e-mail and Newsline. The Sounding Board is also available for download in its entirety from our website at www.nfbnj.org <http://www.nfbnj.org> . We encourage our readers to share The Sounding Board with family members, teachers, professionals, neighbors, friends and any other interested parties. We estimate our circulation to be in the thousands, as readers from across the country regularly report that The Sounding Board influences their lives. We hope you enjoy this issue.
TABLE OF CONTENTS
Presidential Message, by Joe Ruffalo 1
>From the Editor’s Desk: Independence … Philosophically? by Katherine Gabry 2
Convention Reflections, by Connor Mullin 3
What I Learned from My First National Convention, by Jonathan Zobek and Katie Maunder 4
Navigating Convention with the Assistance of an AP, by Carol Thomas 6
My Experience at NFB Leadership Seminar, by Brian Mackey 9
Cane Drive at State Convention, by Veronica Gaspa 11
Blind, but Intelligent, by Harold Snider 12
A Tribute to Rebecca Irvin Bryant, by Joe Ruffalo 14
Speaking Out: Lessons from 9/11, by Natasha Ishaq 15
Sports & Rec Line-Up, by Linda Melendez 17
The 6 Dot Dash: Team NFBNJ We Got This! By Mary Jo Partyka 18
House of Representatives Passes Marrakesh Treaty Implementation Act, by Ryan Stevens 19
Keeping the World Safe, One Computer at a Time, by Kevin Sisco 20
Invitation: After the Holidays Party 21
Grant Writing?? Yes, You Can Do It! By Ellen Sullivan and Brian Mackey 22
NFBNJ’s BELL Program: A Very Successful 5th Year! By Mary Jo Partyka 24
Why Get Involved? by Bea Oliveti 26
NFBNJ Contact Info 28
PRESIDENTIAL MESSAGE
Greetings Fellow Federationists,
As I conclude my 25th year as your president, I reflect back to my first year as president, 1993, when the New Jersey Affiliate had two chapters and one division. Today, not only do we have seven chapters and nine divisions, but we also have a good number of committees, programs and projects. Congratulations to our members, both past and present, and to those who will join us in the future, as your stories and experiences, and our shared wisdom continue to raise expectations so that we can live the life we want and continue to change what it means to be blind.
The Sounding Board is one way through which we work to achieve these goals. In this edition, you’ll read thoughtful articles by those demonstrating their growth as a person, growth as a member in the organization and growth in sharing the gift of the Federation.
Another way we seek to share and grow is through our annual state convention. This year’s convention is set for Thursday, Nov. 1 through Sunday, Nov. 4, at the Renaissance Woodbridge Hotel in South Iselin, NJ. Our theme is “Live the Life You Want: Blind with Vision,” and we will honor longtime member Brian Mackey. All the details, including travel tips and hotel particulars, can be found at www.nfbnj.org <http://www.nfbnj.org> .
Congratulations are in order for Ellen Sullivan, chair of the Fund Raising/Grant Writing Committee, and committee members Brian Mackey, Annemarie Cooke, myself and others. Under Ellen’s leadership, and with desire, a goal and clear objectives, NFBNJ was successful in receiving two grants. Read the article in this issue that highlights the process.
I want to thank all for your continued support, interest and effort in providing the gift of the Federation to others, and hope current members will consider bringing in new members in our Bring One Win One challenge.
On a personal note, September 30, 1968 marked the 50th anniversary of my induction into the army. From then, as a 19-year-old teenager, to now, as a 69-year-old senior, I look back over my life and hope I have grown as a person, husband, family man and a friend to others. My personal goal is to continue to build growth in all of us. Let’s Go Build The Federation!
Respectfully,
Joe Ruffalo, President
IMPORTANT DATES
October 15: White Cane Awareness Day
October 16: Educational Outreach Boscov’s Department Stores
November 1 to 4: 42nd Annual State Convention, Woodbridge
January 5: 10th annual After the Holidays party
January 27: Washington Seminar begins
April 13: Comedy Night, Belleville
FROM THE EDITOR’S DESK: INDEPENDENCE … PHILOSOPHICALLY?
By Katherine Gabry
It wasn’t until I became intimately involved with the blind and DeafBlind communities more than 25 years ago that I began to explore philosophically the meaning of “independence.” At that time, I was a young mother of a child born deafblind. As a hearing and (mostly) sighted person (I am night blind), it was hard for me to envision an independent future for him. Upon his diagnosis and for years after, the goal was always for him to become an “independent” individual, meaning able to read, converse, graduate from college, maintain a home, find – and keep – a job, travel safely, get married.
These were also the “independence” markers of achievement expected of my brothers and me. The difference is that as we were growing up, they were never discussed; they were simply implied. For my son, they’ve been discussion topics his entire life: in school, at every doctor’s appointment, with vocational rehabilitation professionals, with his friends and family.
I’m not sure why it’s taken me 25 years to put “independence” into a more logical perspective. Perhaps I’m just getting old and more philosophical. My father often quoted the English poet John Donne – “No man is an island” – and, in thinking about myself, I’ve always believed that to be true. Each of us is part of a larger community. Each of us has strengths to contribute, as well as times when we accept a helping hand from others.
Recently, an acquaintance I met at the Seabeck Retreat for DeafBlind in Seattle many years ago, Paul Deeming, wrote a tagline for his email that set me thinking anew: “The expectation of ‘independence’ in our society is wrong. We, by our very nature as human beings, are interdependent. What we should strive for is a good and fair balance of interdependence; at times needing more support, at times giving that support to others. No one is truly independent unless they are living under a rock in the desert.” Paul and I have both devoted our careers to working with DeafBlind, and I believe we’re both aware of the double standard that exists for those who are differently abled: If I ask for help, it’s because I’m independent enough to know my limits; if my son holds up a card asking for assistance in crossing the street, he’s viewed as dependent, needy, vulnerable and weak.
I want to toss that double standard. Whenever I spend time with a friend, attend a stimulating meeting, or volunteer my time and energies, I come away energized myself. I believe the same holds true for all of us. The advice of friends, being with loved ones, and the give-and-take of a community give us strength to carry on, to hope, to grow, to succeed, and, ultimately, to live in peace and harmony. The NFB is such a community. Over time, my perspective on “independence” has evolved. When my son needs assistance for something like crossing a street, when he takes the arm offered him, then confidently puts out his cane, crosses the street, and signs “thank you,” his posture, strength and demeanor have done more than just demonstrate his independence. They have also given that man, woman or child who has assisted him a sense of purpose that day and a vivid experience of interdependence, of the giving and receiving—person to person—that make this world a better place.
CONVENTION REFLECTIONS
By Connor Mullin
Editor’s Note: Connor is a native New Jerseyan pursuing his master’s in cane travel instruction at Louisiana Tech University. As a future instructor, he is excited to give back to the blindness community that has supported his mission to build his independence. In his spare time, he enjoys reading, playing the bass and drums, and being in nature.
Similar to my first national convention experience last year, this year brought exciting new opportunities to grow as a blind person, a blindness professional and a member of the Federation. This was especially true this time around because I was fortunate enough to receive a National Federation of the Blind scholarship. As part of the scholarship program, I was matched with blind mentors from across the country, and each day of the convention, I spent time getting to know who they are, what they have done and how they contribute to the NFB. Whether it was listening to how Candice Chapman approaches her blindness with clients as a counselor, Everett Bacon’s work on audio-described media with the Federal Communications Commission, or Dan Wenzel’s experiences as a travel instructor and director at training centers and agencies across the country, I was truly impressed and grateful to have such easy access to these accomplished and knowledgeable individuals. Although the convention is behind us, I hope to maintain connections with my mentors as I continue to build my network within the Federation.
In addition to my scholarship activities, I also took advantage of the events for rehab professionals to learn more about the field of blindness rehabilitation and to network with blind travel instructors. Talking to my future peers provided me with a sense of belonging and of excitement to enter my career, as well as valuable knowledge of how to work with certain students and find ways to make a positive impact. What I found most interesting was the disagreements among these capable professionals over important issues facing the O&M profession in particular, and blindness rehabilitation in general. One such issue was the debate over whether and how to incorporate technologies like AIRA into the travel curriculum. Some instructors believed that focusing solely on nonvisual, nontechnical skills is the best way to optimize the time instructors have with their students, while others argued that clients, especially younger clients, are increasingly reliant on and motivated by technology-driven approaches to completing tasks. The disagreement was a sincere one, and, rather than be unnerved by it, I thoroughly enjoyed observing the process by which NFB philosophy is clarified by its stewards in preparation for these individuals to return to their work and act on these beliefs.
Overall, my convention experience was, indeed, an informative – and busy – opportunity. The connections I made with Federation leaders, blindness professionals and others proved enriching to my development as a blind person, blindness professional and member of the National Federation of the Blind. I look forward to seeing how this convention’s experiences will influence my time next year in Las Vegas.
WHAT I LEARNED FROM MY FIRST NATIONAL CONVENTION
THOUGHTS FROM NEW JERSEY’S FIRST TIMERS SCHOLARSHIP WINNERS
Editor’s Note: Jonathan Zobek, Katie Maunder and Dawn Ferrara were New Jersey’s three recipients of the Kenneth Jernigan First Timers Scholarship, which provided funding for them to attend the 2018 NFB National Convention in Orlando. The goal of the scholarship is to not only attend the convention, but also to learn from it, and teach others when you return home. Jonathan and Katie share their thoughts below. Look for Dawn’s story in the Spring edition of The Sounding Board.
Jonathan is a junior at The College of New Jersey, majoring in interpersonal communications. He hopes to eventually work with the blind and visually impaired to help the next generation live the lives they want. In his spare time, Jonathan dabbles on the piano, and is an avid reader. Here’s what Jonathan has to say about his first convention experience:
The 2018 NFB National Convention in Orlando was one of the greatest experiences of my life. Because I’m a college student, I attended many of the NABS (National Association of Blind Students) events, such as the business meeting and the NABS Olympics, which consisted of games such as trivia, song identification and even a fitness table. While these events were enjoyable, the most rewarding was the NABS Networking, in which students were encouraged to mingle and talk with each other. I met so many students from diverse areas and backgrounds. I also had the opportunity to meet the president of NABS, Kathryn Webster, along with other board members and learn more about NABS as a whole. While NABS was one of the organizations whose meetings I attended, I did so much more. For example, I am extremely interested in assistive technology, so I attended HumanWare’s presentation, and I attended Amazon’s presentation about the accessibility features in their products. It was great to hear about these devices and try them out in the Exhibit Hall. Another highlight was meeting President Mark Riccobono, and hearing him speak, especially at the banquet.
Outside of the convention itself, the experience of traveling by air to and from Orlando and within the hotel greatly improved my orientation and mobility skills, and further developed other independence skills.
Overall, my first national convention was an interesting and rewarding experience. Not only did I get to know NABS better as an organization and learn about a wide range of technology, I also increased my own independence and learned more about the NFB as a whole. This was one of the most rewarding experiences of my life, and furthered my independence to help me live the life I want.
Editor’s Note: Katie Maunder was recently elected secretary of the Garden State Chapter. In her spare time, she enjoys reading and writing stories, especially those connected to Harry Potter, and she spends time with her boyfriend, Ryan, with whom she also shared the “utterly fantastic” 2018 NFB National Convention.
As Ryan and I flew from Philadelphia to Orlando, I felt two emotions simultaneously: Nervousness and excitement. I had heard a lot about NFB National Conventions, so I was aware of some of the activities that would occur, but I had never done anything quite like this before, so that’s where my nerves stepped in. Nonetheless, I knew that whatever happened, it would be an adventure I’d never forget. Looking back, I had no idea how right I would be in that assessment! It was such an enlightening and profound experience that it’s impossible to write about all of it, but there were definitely highlights on which I can focus.
One thing I thoroughly enjoyed was the first morning of General Session. The Roll Call of States will forever stick in my memory. It was fascinating to hear from all the affiliate presidents, and to hear what each state is doing throughout the year. The singers at the opening ceremonies added a lot of enriching flavor to the event. I was fascinated to see all the delegates in action when resolutions were presented, and how we conducted ourselves as a group, especially when differences of opinion arose.
Another highlight for me was listening to Ray Kurzweil speak. My parents first heard his name when I was two years old, and it’s mind-boggling how much technology has advanced since then. When I was a teenager, I owned a scanner and used Kurzweil 1000 to read books. Being in the same room with this legend was very emotional for me. He is one of my heroes, and he was just as great a speaker as I had imagined he would be.
My biggest highlight, however, was hearing President Riccobono’s speeches, both the Presidential Report and at the banquet. He has such an eloquent, precise way of speaking that I hung on his every word. He is so devoted to the NFB, and that came through loud and clear during his remarks. When he spoke during the banquet about the role of blind women in society, it touched me in a way that will always stay with me. I can honestly say that he is one of the best speakers I have ever heard.
I am so glad I attended the 2018 NFB National Convention. There were countless additional experiences that impacted me, such as the mock trial, working in the exhibit hall, eating in the restaurants, going to the Friday night concert and attending the talent show. I met some fascinating people, learned how goals can be achieved, and gained more confidence in myself. I am so grateful to everyone who made this possible for me. I especially want to thank Joy and Allen Harris for providing me with a Jernigan Scholarship, and Joe and Judy Ruffalo for providing an additional scholarship. In years to come, I will look back on this experience with many fond memories. I plan to be a member of the NFB for the rest of my life, and hope to attend many more conventions in the future.
NAVIGATING CONVENTION WITH THE ASSISTANCE OF AN AP
By Carol Thomas, as told to Annemarie Cooke
Editor’s Note: For the first time, the NFB’s DeafBlind Division offered an Access Provider (AP) program at the national convention. In the past, DeafBlind folks have brought a friend or significant other, or hired their own AP, also known as a Support Service Provider (SSP); but this is the first year that the DeafBlind Division and the National Office have given recognition and their blessing to such services. It was my honor to coordinate the program, under the direction of DeafBlind Division President Alice Eaddy and AP Committee Chair Mark Gasaway. The program utilized the services of 22 volunteer providers, all professionally trained to provide access to environmental and situational information that someone who is DeafBlind does not see or hear. They also provide human guide services and facilitate communication in the preferred language of the DeafBlind person. All of the volunteers were fluent in American Sign Language, and all of them drove one and a half to two hours each way to participate. These services were provided at no charge to the members of the DeafBlind Division, and each member reported that the providers enriched their convention experience. Everyone expressed their gratitude for the services of these dedicated volunteers. I extend sincere gratitude to both Joe Ruffalo and Janet Parmerter for their commitment to the DeafBlind members of the Federation. Thank you, both. Here’s Carol’s story on how she discovered APs, and how they made a difference in her 2018 NFB National Convention experience.
Carol Thomas has been almost totally blind since childhood. A decade ago, she experienced some permanent hearing loss. Then, after some surgery this past spring, medical advice was for the Bridgeton, NJ woman to use a wheelchair for covering long distances as she had some respiratory issues.
Attending the 2018 National Federation of the Blind National Convention in Orlando was bound to be a challenge. There were vast distances between the elevators to the sleeping rooms and the convention meeting rooms and exhibit hall. Solo navigation through the throngs of fellow Federationists and trying to pinpoint locations within such a noisy environment was a daunting prospect.
Carol had contacted Anil Lewis at NFB headquarters in Baltimore requesting accommodation. He reached out to Kathy Gabry and Alice Eaddy of the DeafBlind Division. And thus, Carol was introduced to the assistance of Access Providers, or, as they’re also known, SSPs – Support Service Providers – who facilitate communication, and provide environmental information and navigation assistance for a DeafBlind person.
“Through a great deal of confusion on my part and a lot of challenging work on Kathy’s part and her team in Florida, the AP volunteers seemed to appear at the last minute and were abundantly helpful,” Carol recalled.
Despite her long-time loss of both hearing and sight, the national convention was Carol’s introduction to this kind of access facilitation.
“It was a very good week! When I found myself in a particularly noisy environment, I was even more grateful for that pair of eyes and ears who were behind me all the way. I love the fact that they were there to assist, not parent or baby us. One of my AP ladies mentioned she thought she was going to help the blind this week. Instead, she discovered just how much the blind population can do with very minimal assistance,” Carol added. ”Thanks to Kathy G., I have learned about the SSP program in NJ and have filled out an application for local services.”
Carol kept a detailed and ebullient diary of her week at convention. Here are excerpts and anecdotes of how the AP volunteers enhanced her convention experience:
DAY 1: I requested a room near the elevator; although I had a wheelchair, even short distances seemed much longer. After a brief nap, I propelled my chair with my feet down the hotel corridor until a kind stranger helped me onto the elevator.
My first AP met me in the lobby, and we attended a meeting, then went to the Crafter’s Division Fair. What a pleasant surprise to meet two people from my past. My next destination was the Publix supermarket to buy a few items. The bus to the market was due in a few minutes. My AP waited with me and even helped solve a ringer issue I had with my smart phone.
At the grocery store, a staff member helped me find what I wanted, and then, at the deli, I purchased a wrap and a half-sub for my roommate Stephanie and me, a pennywise dinner!
DAY 2: A text came from that day’s AP volunteer. Once again, it was off to the elevator with my bag, note taker, chair and cane. As the APs were prohibited from going to guestrooms, I inched my way toward the elevator, when a lady with a very thick accent asked me where I was going. I told her I was headed for the convention center. “Yah! Yah!” she said. I asked if she was Rachel, my AP, and she assured me she was. I wondered what I was going to do with an auditory challenge and an AP whose English was so difficult for me to understand. There was nothing more to do but pray that it would be a good morning. For both of us. Rachel got me on the elevator, but when I turned around to speak to her, I realized she wasn’t on board! A kind lady pushed me off the elevator, and someone else moved me out of the way of traffic and into the lobby. Then came the phone call of the day! A very sweet voice stating she was my AP and was looking for me. I was elated – and relieved – that the real Rachel spoke English clearly for me to understand. We met, and off to the Exhibit Hall we went. What a pleasure to have extra eyes and ears and help moving my wheelchair! After a morning of browsing and shopping, I lunched on my leftover sub.
That afternoon my AP and I visited several meetings. There were so many things of interest that it was hard to keep up with them. After listening to the speaker at the DeafBlind Division workshops sharing his report regarding art for people who are blind or DeafBlind, we ventured out to locate the display mentioned in his presentation. Wednesday evening, I enjoyed the quietness of my room.
DAY 3: The assistance was great Thursday, and I also hit one of the highlights of the trip! The AP had to leave after dropping me off at the play about the life of Louis Braille performed by students and alumni of the Louisiana Center for the Blind. I graduated from LCB in 2003. After the play, the alumni and staff had time to visit. That was an exceptionally special time! I saw at least seven people there from my days at LCB. All the while, I was wondering how I’d ever make it back to my room. There was just no way I could walk it or even make the wheel chair take me that far without being totally winded. Someone – who turned out to be an acquaintance I hadn’t seen in years! – offered to take me back to the hotel. This was a surprise and delight. She and I had a wonderful time reminiscing and catching up on route to the room.
DAY 4: Friday provided new challenges. My phone would accept text messages, but not allow me to reply. That resulted in some frustration as the AP and I were unable to communicate. At last we connected, and we arrived at the General Session in time for roll call. Afterward, my AP enjoyed visiting and learning at the LCB luncheon.
Friday evening, my AP accompanied me to the Colorado Center for the Blind’s 30th year celebration. Both of us found the session full of information. At one point, my cane fell on the floor in front of the wheel chair. Quite naturally, I reached down to get it. Whoops! It happened so fast and it surprised both the AP and me! Lesson learned: If I don’t want to land on my face, it might work better to stand up and then reach for the cane. With assistance from my AP, I was also able to connect with a CCB staff member about a friend who is losing vision and who could benefit from a week-long training for senior adults.
DAY 5: Saturday I opted to spend a little time with my friend and roommate who was working for an exhibitor. We had a nice Chinese lunch delivered. Then it was off to the Exhibit Hall for her and back to the Convention Center for me. My AP helped me print my boarding pass for the next day’s flight home, and then we went together to the Talent Showcase. Back to my room and finished packing in time for my 3 a.m. wakeup call, and 4:15 a.m. pickup for the ride back to the airport.
I greatly appreciate all the work that went into arranging the volunteers and those they were to assist. Although there were little challenges throughout the trip, it seemed as though there were very nice people all along the way. Medically, perhaps, I shouldn’t have gone, but emotionally, it was a great experience.
MY EXPERIENCE AT NFB LEADERSHIP SEMINAR
By Brian Mackey
Editor’s Note: Brian currently serves as NFBNJ Affiliate treasurer and webmaster, treasurer of the At-Large Chapter, and secretary of the Sports & Recreation Division. Brian is also the webmaster for five additional NFB State Affiliates, along with the NFB DeafBlind Division. When Brian isn’t doing NFB work, he plays golf with the Middle Atlantic Blind Golf Association, and works out twice a week at a local gym with a trainer.
On Friday, January 27th, Patricia Mauer from the National Office in Baltimore phoned to invite me to the 86th NFB National Leadership Seminar, an invitation extended by President Riccobono. I was surprised and honored to accept the invitation.
In February, after a relaxing train trip to Baltimore and a cab ride to the National Office, we were free until dinner, at which time we grilled steaks using basket-shaped racks with which to flip them. Someone saw the grill’s high flames and called the fire department. The fire department came, investigated and ruled the fire as a “good intent” blaze. No, I did not burn my steaks!
The next morning, we toured portions of the building, getting a firsthand look at the proposed location of the new sleeping rooms just down the hall from the dining room. We also learned of plans to rent some of the second floor storage space to generate funds for maintaining the Jernigan Institute.
Later that afternoon, Chris Danielsen, director of public relations for the NFB, told us about the organization’s “brand standards.” We learned, for example, that affiliate leaders should use email addresses with the affiliate domain name, such as <mailto:president at nfbde.org> president at nfbde.org, for example, instead of a personal email address. The brand standards also addressed formatting emails on behalf of NFB. The Advocacy and Policy team reviewed various legal topics such as the TIME Act, AIM High, Access Technology Affordability Act, IDEA, Social Security and Medicare, and sending mail via Free Matter for the Blind.
The NFB Code of Conduct was discussed in depth. We went over each section and the reasoning behind its creation. One Code item addressed the Code of Conduct on state convention registration forms. It was recommended that it should be displayed as a checkbox item where a convention registrant would agree to abide by the Code of Conduct, with a link to view the full text on the affiliate website.
We also had a couple of team building exercises. I learned that whenever you are working on a project with a group, you should assign one individual to lead the project, delegating portions of the project to others in the group. Those individuals should be the only ones in charge of a given task. While doing a task, it is okay to make a mistake as long as you learn from it and don’t repeat it. The best way to make decisions is to gather all necessary facts and then make an appropriate decision, such as deciding to send a particular message to affiliate members on the listserv on NFBNet.
I learned that there are three ways that state and national members can demonstrate their ownership of the organization. The first way is by reciting the NFB Pledge at all chapter meetings, and state and national conventions. The second way is to play the NFB Presidential Release during the chapter meetings. As Joe Ruffalo always says, “The Presidential Release connects the organization at the national, state, local and personal levels,” and I definitely agree. A third and final way to show ownership of the organization is to perform jobs during state or national conventions, and to volunteer at the affiliate’s Braille Enrichment for Literacy & Learning (BELL) Academy. The supreme authority of the organization, at both the national and state levels, comprises those assembled at the annual convention. Between conventions, the state and national boards manage the organization.
I also learned the criteria considered for becoming a member of the state or national Board of Directors. An individual must be dedicated to the organization, be knowledgeable of the organization’s policies, be loyal to the organization, and be able to advise and support the state or national president. The members of the national or state board must be strong enough to dismiss the president from his/her leadership role when necessary, if he/she is doing something that would damage the organization. At a certain point, a leader must recognize the necessity of stepping aside for the betterment of the organization. When I learned late last year of my eventual move to Pennsylvania, I began the process of stepping away from my various leadership roles within the New Jersey Affiliate. I congratulate those who have taken over some of those roles, and I will support those who will take over my remaining roles at the conclusion of this year’s state convention.
I learned that you don’t always need to have a division to talk about specific topics such as Braille, diabetes, parents, etc. A committee can be created to discuss these topics. The committee can become a state division only if there is enough interest and there is a national division. All committees becoming divisions must coordinate with the State Affiliate Board of Directors. The differences between a division and a committee are the following: 1) committees don’t have a treasury; 2) no membership dues are collected; 3) members join by appointment of the affiliate president; and 4) positions are appointed by the affiliate president. The affiliate president is an ex-officio member of all committees except the Nominating Committee. Committees can fundraise, but funds collected will go into a line item account for the committee under the affiliate treasury.
During the seminar, we had to consider what we believe are the top five or six priorities of the national organization. I discovered that our top priority currently is to obtain long-term unrestricted funding sources to fund the organization at both the national and state levels. Without funding, we can’t run as many programs and projects, like the BELL Academy or the Washington Seminar.
Here’s what I think the top seven priorities are for the New Jersey Affiliate:
1. Obtaining long-term unrestricted funding
2. Successful succession of affiliate secretary and treasurer
3. Successful succession of affiliate president
4. Grooming new leaders
5. Membership recruitment and engagement
6. Outreach and educating the general public
7. Advocating for the rights of blind individuals, parents of blind children and blind parents
During the seminar, we also reviewed the organization’s history, including the story behind moving the National Office from Iowa to Baltimore.
At this National Leadership Seminar, I enjoyed learning how to become a more educated leader of the organization. I would like to thank Joe Ruffalo for nominating me to attend and President Riccobono for giving me the opportunity to attend. This experience will help me be a strong leader in my new Federation family in Pennsylvania.
CANE DRIVE AT STATE CONVENTION:
PLEASE DONATE YOUR OLD, USED, BROKEN CANES!
By Veronica Gaspa, President, Students Division
Editor’s Note: Vee is a senior at Seton Hall University, president of the New Jersey Association of Blind Students and a mentor in the Employment, Development, Guidance, Engagement (EDGE) program. Vee interned at the National Office last year and, in 2017, released a book of her poetry, Dangerous Dreams, available for sale on Amazon.com.
For the second year in a row the National Federation of the Blind of New Jersey will be running a cane drive at the state convention in November. After convention, the canes and cane parts will be shipped to Kustom Cane in Tennessee, where they will be refurbished and then sent to blind people all over the world who do not have the same luxury access to canes as we do. Last year, NFBNJ members donated more than 30 canes at the state convention, and many of them were sent to Africa where they were most gratefully received. Please bring unwanted canes of all sizes, unwanted cane tips and other random parts of broken canes to the state convention and either give them to me or deliver them to the door prize table. If you are not able to make it to the convention, but have unwanted canes or cane parts to donate, or if you have any other questions, please email me at Veronica.gaspa at student.shu.edu <mailto:Veronica.gaspa at student.shu.edu> or call me at 434-989-1868.
BLIND, BUT INTELLIGENT
By Harold Snider
Reprinted with permission from the February 2009 issue of the Braille Monitor
The Editor of the Braille Monitor at that time, Barbara Pierce, had this comment on Blind, But Intelligent: I have always felt great sympathy for hospital patients because they are likely to be very vulnerable to the whims of authority at a time when they are particularly ill-equipped to deal with the problems that all too frequently occur when prejudice and power converge to attack a weak, perhaps helpless, person. When I was president of the NFB of Ohio, I had to intervene for a blind woman and her husband. He was hospitalized with dementia and other serious health problems. She tried to be with him as much as possible, but she had a job to do, so she worked with him so that he could remember to tell the psychiatrist that his wife wanted to confer with him. When she next arrived at the hospital, her husband was very upset because the doctor refused to meet with a blind family member. He preferred to discuss the case with the Alzheimer’s patient only. We managed to get apologies from everyone involved and an incident report in the doc’s personnel file, but I have very little hope that much has changed in that institution, except that it lost the business of that family for good.
The following report illustrates the problem we have with many (but certainly not all) hospital administrators and medical personnel. The problem might be easier to address if the situation facing blind patients and family members was universal. As it now stands, we must be on guard any time we or those we love are hospitalized. At a time when we are least able to fight for our rights, we must be prepared to do so, and we must simultaneously conduct ourselves in such a way as to persuade those who enter our rooms that we are calm, rational and well balanced. This is of course grossly unfair, but it is the reality of being a member of a low-incidence minority, as blind people are. The following story recounts the way one person dealt with the problem. Perhaps it will encourage others. Harold Snider is a longtime Federationist. He earned his doctorate in history at Oxford University. He has been totally blind all of his life, and he is certainly intelligent.
Sounding Board Editor’s Note: Harold passed away in September 2009, shortly after publication of this story:
In his 1975 banquet speech “Blindness, Is the Public against Us?” Dr. Kenneth Jernigan began by quoting a poem written on the wall of a California coffeehouse. The poem implied pity for “dog-less” blind people. As if that were not bad enough, we incur pity and discrimination for all sorts of other reasons and in many unexpected places. This article discusses signs placed over hospital beds, specifically my bed and on more than one occasion.
When I was in graduate school at Oxford University in England in August 1973, I had to have my tonsils removed because of chronic tonsillitis. After difficult surgery, I returned to my room, where I was visited by one of my readers the day after surgery. He commented in passing, “Harold, did you know there was a sign over your bed that says, ‘Blind, but intelligent’?” I told my reader with some disgust that I hadn’t known anything about the sign, and I asked him to climb on a chair and remove it, which he did with great alacrity. After an argument with hospital administrators, the sign stayed down.
In August 2004 I had a surgical procedure in the hospital. When my wife Linda came to visit me the next morning, she said “Did you know a sign over your bed says, ‘Blind, but intelligent’?” I told her that I didn’t know anything about the sign and asked her please to remove it. She promptly obliged.
Then, in October 2008 I was preparing for surgery in another hospital. In discussions with the preoperative department, I told them about the two previous incidents. They assured me this would not happen. On October 23, when I returned to my room after surgery, you guessed it. Over my bed was a sign that said “Blind, but intelligent.” I again had a discussion with hospital administrators, who informed me that it was their policy that a sign be placed above the bed of every blind patient. I told them they had violated my rights under the Americans with Disabilities Act and other civil rights laws, and that, if the sign didn’t come down, they would face a lawsuit, and I would own their hospital. Grudgingly they removed the sign.
So why the signs, and what was the motive? On all three occasions hospitals told me that they wanted their staff to know that I was blind. I told them that I had no objection to the staff having that information but that it should be placed in my chart and not posted over my bed. They said that I would interact with many staff members who would not read my chart and that the sign served a useful purpose. I replied that, if someone needed to know about my blindness, I was perfectly happy to tell him or her. None of the three hospitals, however, agreed with this logic. When you are in the hospital, you are vulnerable. You are ill and likely in pain. You don’t know whether to remain silent and tolerate the insult or do what I did and insist that the sign be removed.
Finally I would like to consider the wording of the signs themselves. I wouldn’t have been quite as offended if the signs had just said “Blind.” I might not have been quite as offended if the signs had said “Blind and intelligent.” But the signs actually said “Blind, but intelligent.” That really offended me, as if the natural state of blind people is stupid, but this one is an exception. It’s the sort of sign you put on the cage of an animal in the zoo.
All such signs are so totally degrading that they are in my opinion unacceptable. The fact that I succeeded in getting these signs removed shows me how far we’ve come since the Dark Ages. The fact that the signs were put up in the first place shows me how far we have to go to make hospital administrators and sighted people in general perceive us as whole complete human beings having the characteristic of blindness.
The philosophy of the National Federation of the Blind doesn’t deal specifically with signs like “Blind, but intelligent.” Such a thing is too outrageous and egregious to have occurred to anyone as a problem. However, the purpose of this article and my story is education. In all three cases I refused to tolerate such nonsense. I told the staff members what they needed to know. I explained to staff members who came into my room that I was blind, and I also told them that they needed to let me know what they were doing and when. The hospital administrator’s assertion that the sign would have been even more important had I been unconscious is absurd because, if I had been unconscious, my blindness wouldn’t have been an issue at all.
After having been righteously angry and having dealt with the situation as promptly as I could, I believe I could have done nothing more. Educating hospital administrators and staff about blindness is a never-ending process for all of us who may need surgery. May God, in His infinite wisdom, save us from all those experts who think they know what we need better than we do ourselves.
>From the Editor: If you enjoyed this article, you may also like “The Hook on the Doctor’s Door,” by Kenneth Jernigan. Gary Wunder, editor of the Braille Monitor, says, “This article speaks to what we should expect others to know about blindness, what we ourselves do not know, and how humanity should always govern how we deal with those who seem to know less than we do.” “The Hook on the Doctor’s Door” is available through this link: https://nfb.org/Images/nfb/Publications/books/kernel1/kern0702.htm
A TRIBUTE TO REBECCA IRVIN BRYANT
By Joe Ruffalo
Editor’s Note: Joe approached me with the idea for an article highlighting the need to self-advocate and educate others while in a medical facility. This was on his mind because his friend Rebecca was in such a facility, and the treatment she was receiving was not up to par. She complained that the staff were asking others in the room – her sister, her mother – questions that should have been directed to her. Joe encouraged her to voice her concerns to the staff and administration. She asked for the Ten Courtesy Rules of Blindness (available at https://nfb.org/courtesy-rules), and a day later, she contacted the administrator for her floor, presented her with the Rules, and a lively discussion ensued. A few days later, Joe got a call from the administrator, who was in a meeting with other administrators and staff. Joe joined their discussion, and he felt that the outcome made them all more sensitive to the needs of those who are blind, and assisted Rebecca for the remainder of her stay. While this helped for the short-term, and certainly improved Rebecca’s stay, consistent and continuing training should be a priority, especially for institutions with a large staff and 24-hour work day.
I first had the privilege of meeting Rebecca Irvin about 10 years ago. She was a student at Diamond Spring Lodge in Denville. I had been asked to conduct a presentation there for the students and staff about the program I was managing at the time, the Senior Community Independent Living Services, which served persons over 55 who experienced vision loss. The first time I met Rebecca, I knew that I had met a fireball! She wanted no part of a pity party and she was ready to not only learn, but also to share with others what she had learned.
Rebecca joined my program as a client and, later, became a phone companion volunteer. One day, as I was reviewing the names of newly blind seniors, I came across someone I thought Rebecca could assist. When I told her that the person I had in mind was a man named Solomon, she replied, “Is he married, and if not, is he good looking?”
I replied that he was, indeed, single, but the good-looking part would have to be left to others to decide. The phone companion match worked more than was expected. Rebecca became his volunteer, and after several years, Solomon joined the Northern Chapter, where Rebecca had been elected president, and Rebecca and Solomon were married on February 16, 2014. Rebecca was one who gave of herself by teaching Braille, the gift of literacy, and by making presentations to senior agencies and organizations.
Rebecca passed away in July. We can all keep her memory alive by sharing her story and volunteering in the same selfless way. May she rest in peace.
Before Rebecca’s passing, when she was in the hospital in Livingston – or perhaps in the rehab center – the treatment she received as a patient was not up to par. One day, she told me that the staff were asking others in the room – her sister, her mother – questions that should have been directed to her. I told her that her feelings should be known to the staff. She asked me to email her the Ten Courtesy Rules of Blindness, and a day later, Rebecca contacted the administrator for her floor, presented her with the Rules, and a lively discussion ensued. A few days later, I got a call from the administrator, who was in a meeting with several other administrators and staff. I agreed to her request to be put on speakerphone, and the discussion that followed made them all more sensitive to the needs of those who are blind, and assisted Rebecca for the remainder of her stay. While this helped for the short-term, and certainly improved Rebecca’s stay, consistent and continuing training should be a priority, especially for institutions with a large staff and 24-hour work day.
SPEAKING OUT: LESSONS FROM 9/11
By Natasha Ishaq
Editor’s Note: Natasha was only six months old when 9/11 happened, and she and her family lived in England at the time. Since then, she has become a United States citizen and she is now a senior at Franklin High School in Franklin Township. She is a high-ranking cadet in the Junior Reserve Officers Training Corps, and a member of Sociedad Honoraria Hispanica, an honor society for students studying Spanish or Portuguese. During the past two summers, she has interned with NJ CBVI. As a young adult American, she believes that September 11 was a significant time in modern history: “It unmasked the ugly side of humanity … (but also brought to the forefront) the qualities of courage, bravery and sacrifice” – qualities that are so often overlooked. She also says that, “The terrorist acts were committed by people who share a similar ethnic and religious background as myself. It both hurts and disgusts me to know that people who share such similar roots can be so different for the worst of reasons … It reminds me of how lucky I am to have parents and a brother with a different mindset, to live in a country of freedom that was founded on the belief of accepting people for who they are. It reminds me of what America should be: A country that unites instead of divides.”
Natasha believes that her generation should learn from history, and she says, “We cannot be better leaders of tomorrow if we ignore the leaders of yesterday and today.” This, then, is her motive for writing the following:
On September 11, 2001, the United States experienced a man-made catastrophe that shocked millions throughout the nation and the world. As a result, the United States – and the world – would never be the same.
The attacks of September 11 would push the United States into fighting a war against global terrorism. Simultaneously, the inner workings of the nation were shaken. A mutual respect and trust between men of different races and religions were broken that day. Americans would spend the next decade living in fear of one another and convincing themselves that the man-made stereotypes of intolerance, injustice and hatred were true. A number of victims of September 11, as well as the family members of those lost in the fire and rubble, live with a burning resentment, anger and inability to forgive. It is sad to think that one day in modern history could scar someone so badly.
Nevertheless, it is vital to understand and remind ourselves that we are still standing as the United States of America. We continue to welcome individuals from all over the world and invest in a nation that has the power to do great things in this world.
Though September 11 was a tragedy that unleashed perhaps the worst of America, it was also a tragedy that also released the best of America. Complete strangers helping one another escape in the Twin Towers, for example, one man singing “God Bless America,” showed us a unity of man. First responders and fire fighters giving their lives, knowing that they would not return from the flames, just to save innocent civilians they had never before met. The passengers of Flight 93 sacrificing their lives in an attempt to take control of their hijacked plane and steer it away from the White House. So many died a hero that day. While we lost Americans, we still gained a sense of community and unison in honor of American pride and what this nation of freedom and justice for all stands for.
We remember September 11 to mourn those we lost. But we remember this horrific day of American history to remind us what hate can do. We remember what true heroism is in the face of oncoming danger. We remember how the best of humanity is revealed when the worst is revealed. And we remember to be grateful for each day we live and continue to live for those who never could.
Sports & Rec Line-Up
By Linda Melendez
Editor’s Note: Linda Melendez is a member of the state board and serves as president of the NFBNJ’s Sports & Recreation Division. In addition, Linda is a member of the At Large Chapter, and the Braille, Seniors, DeafBlind and Technology divisions.
The Sports & Recreation Division was established at the 2017 state convention to meet NFBNJ members’ requests for recreational and sporting activities. The result so far? Your enthusiasm, participation and engagement have created a dynamic division of 65 members (12 of whom are new to NFBNJ) that offers a wide variety of activities, events and challenges – truly, something for everyone! Special thanks to all who have supported us as activity leaders and participants, and, especially, the division’s board, including Vice President Annemarie Cook, Secretary Brian Mackey, Treasurer Geri McGinty, and board members Misty Hagan, Tony Santiago and Dawn Ferrara. Here are some highlights of the year so far:
* Philly Touch Tour: In May, Trish Maunder, who designs tours for people who are blind or low vision, led us on a multi-sensory tour of the 9th Street Italian Market in Philadelphia. We learned about the market's century-old history and heritage, reveled in the rich aromas and sampled just-made pasta, cheeses, chocolates, aged balsamic vinegars and olive oils. The nine division members who participated had a wonderful time and added to the local economy with our many purchases.
* Summer Get Yourself Moving Personal Challenge: Congratulations to those who came out of their comfort zone to complete their personal challenge in June!
* National 6 Dot Dash: Team NFBNJ We Got This traveled to Baltimore in early June to support this event that promoted Braille literacy. (Please see following article.)
* Bring One Win One Challenge: Current members are encouraged to bring a new member into the division. Both parties are entered into a raffle for a fabulous prize. Details are available at www.nfbnj.org. Challenge chair: Geri McGinty.
* NFBNJ Book Club: This club meets quarterly by conference call. The goal is to learn about the Federation and our members through reading and sharing. Participants must register online. Club moderator: Jane Degenshein.
* NFBNJ Bowling League: This activity is based in Bellville and runs for eight weeks this fall. Bowling coordinator: Dawn Ferrera.
* Asbury Park Beach Days: Walks on the boardwalk, lunch, ice cream, tons of fun!
* Second Annual Step Challenge: Participants are encouraged to walk at least 7,500 steps a day throughout the month of October. All must register before October 1 and complete a survey at the end of the challenge. Coordinator: Tony Santiago.
All are welcome to join our monthly conference calls; call in information is available at www.nfbnj.org <http://www.nfbnj.org/> under Chapters and Divisions. For our exciting events, activities and challenges, use the direct link www.nfbnj.org/sports-and-recreation-calendar <http://www.nfbnj.org/sports-and-recreation-calendar> .
THE 6 DOT DASH: TEAM NFBNJ WE GOT THIS!
By Mary Jo Partyka
The weekend of June 2nd found 12 members of the Sports & Recreation Division and some family members setting off for Baltimore for the 6 Dot Dash. Participants included State Affiliate President Joe Ruffalo, Sports & Recreation Division President Linda Melendez, Siham Atchan, Ada Crandle, Annemarie Cooke, Jane Degenshein, Marian Lee, Brian Mackey, Mary Jo Partyka, Gail Stokes, Andrew Rees and Tony Santiago. Marian Lee’s family accompanied her to celebrate her birthday and to participate.
The trip took seven months of planning that included arranging for staying at the National Office, renting a 12-person van with a driver, registering for the race and finding meeting places for three pickups. Our participation wouldn’t have been possible without the tireless work of Linda Melendez. She communicated with the National Office concerning procedures for staying there, provided us with the details we needed and fundraised at her local ShopRite to help pay transportation and food expenses.
Rising early on June 2nd, we were all anxious to get going, and then Linda notified everyone about 9 a.m. that we couldn’t rent the van due to difficulties with the car rental agency. Although apprehensive, we just knew that something would happen to enable us to go, despite this setback. Then, Ada Crandle told us that her husband, John, agreed to drive us! We were ecstatic and very grateful to them.
We arrived in Baltimore later than expected, having enjoyed a drive that had become a warm bonding experience for all of us, filled with stories, laughter and getting to know each other better. We arrived in time for dinner and went to a nice local restaurant. Later, some members chatted in the National Office Harbor Room before settling in for the night, while others located their rooms.
Race Day arrived. The Virginia Affiliate joined us, as did many locals. The whole thing was very exciting. The Baltimore Orioles were one of many race sponsors, and the money we raised was earmarked for increasing Braille literacy. Although most people acquainted with the blind think that all blind people can read Braille, this is not at all true. Only 10 percent of blind people can read Braille, and our goal is to increase this number and make Braille available to everyone who needs it.
After the introductions, music started and the 3.73-mile race began. Some participants finished in 45 minutes, while others, including most of our group, took 2 hours. The weather was cool and the walk was long, but enjoyable. We walked through Baltimore Harbor where police, volunteers and marshals at every corner directed us. It felt good to be part of a large group doing something they believed in. Not all of us thought we could finish the walk, but we did. Team NFBNJ We Got This won first place for the largest participating team, and our State Affiliate President Joe Ruffalo was the last person to cross the finish line, where our National President Mark Riccobono and his family greeted and thanked us. We were tired, but happy.
As you can tell, this experience was special to all of us. We supported and encouraged each other along the way. Even more special was the feeling of camaraderie which emerged among all of us. Even though we talk to each other on conference calls and at conventions, it wasn’t the same as getting to know one another in a social setting. I feel like I came to know everyone better and that feeling is something I will always treasure and remember.
HOUSE OF REPRESENTATIVES PASSES MARRAKESH TREATY IMPLEMENTATION ACT
By Ryan Stevens, NFBNJ Legislative Chair
Editor’s Note: This treaty, if signed by President Trump, will greatly expand access to books and other printed material to blind and print disabled people throughout the world. It would allow a person from one country to get a book in non-visual format from another country, rather than having to wait for his or her home country to create its own non-visual version. It also makes it easier to acquire material in multiple languages.
I wish to thank the members of NFBNJ who made phone calls and sent emails to their members of Congress and to Senators Booker and Menendez. This is proof that our efforts do get results for the blind of New Jersey and the nation, and in this case, the world. The following email was received from the NFB on September 25, 2018:
US House of Representatives Passes Marrakesh Treaty Implementation Act
Treaty Now Awaits Presidential Action
Washington, DC (September 25, 2018): The United States House of Representatives has passed the Marrakesh Treaty Implementation Act (S. 2559), which makes modest changes to copyright law that will bring the United States into compliance with the terms of the Marrakesh Treaty. The Senate gave its advice and consent to ratification of the treaty and passed the implementing legislation on June 28.
“For almost a decade now, the National Federation of the Blind, our partners, and other advocates have worked to bring the Marrakesh Treaty into being and into force,” said Mark A. Riccobono, President of the National Federation of the Blind. “Today we applaud the United States House of Representatives for its passage of the Marrakesh Treaty Implementation Act. We now urge President Trump to sign this implementing legislation, and to order the State Department to deposit the instrument of ratification with the World Intellectual Property Organization as soon as practicable. We are closer than ever to the day when blind Americans will have greater access to the world's knowledge, in many of its original languages, than we have ever had in human history."
KEEPING THE WORLD SAFE, ONE COMPUTER AT A TIME
By Kevin Sisco
Editor’s Note: Kevin has been a member of the NFBNJ for most of his life and was one of the first students in the Leadership, Education, Advocacy and Determination (LEAD) program back in the 1990s. He and his wife live in Northern New Jersey. He does not allow his blindness to hold him back, and he is truly living the life he wants!
My name is Kevin Sisco. I’m a computer security consultant, IT professional and broadcaster. My goal is to bring you the best in technology news, particularly information not provided by the mainstream media. This is my story.
My interest in science began when I was very young. I was interested in all the sciences, but felt a particular pull towards electronics and computers. One year for Christmas, I received a science kit that had motors, small solar panels and other parts to create anything from a doorbell to a small fan. This kit opened my mind to the inner workings of electronics, as well as to how a simple circuit worked. I was fascinated! After high school, I went to the Cittone Institute, where I earned a certificate in computer programming, and then I continued my education at a county college, where my second love began to grow: Radio.
I’ve always been drawn to radio, and particularly talk radio. With talk radio, I feel myself being drawn into the life of the radio personality. That connection gives me a sense of security that I cannot fully explain to this day. After leaving college, I began working for myself, removing viruses and spyware for others. At one point, I sat down with a local radio station to see how they could help me grow my business. Before I knew it, I not only had ads running on the station, but I had also landed a spot on the air in the mornings. My radio show consisted of giving advice to listeners on how to best stay safe on the internet. I also mixed in humor, making the show both educational and entertaining.
Nonetheless, all good things must come to an end, and after three years, the station, sadly, shut down. How would the world now hear my message of hope? How would the public understand the truth of staying safe? Clearly, something had to be done. I resolved to start a podcast to teach listeners how to protect themselves from viruses, cyber-attacks and other scams. My new goal was to empower people to take control of this digital landscape known as cyberspace. If they don’t, the power very easily can be handed over to scammers and thieves, people who mean nothing but harm to the world. Indeed, I see this situation as a true battle of good versus evil, and so, Kevin’s Consulting Live was born.
As an independent business owner, it’s tough to make ends meet. I’ve tried selling advertising, but it’s a struggle to find folks who want to align themselves with a show such as Kevin's Consulting Live. Why? Because most people fear what they do not understand, and it became clear to me that even some of the most tech savvy people seemed to fear the world of computers. Most of the people that I came in contact with did not know how to think outside of the box in order to stop online threats. Solving such problems seemed to prove too much for them. It really does take more than hitting the scan button on your antivirus software; you need to know where malware usually hides and where hackers enter. I saw that most computer professionals did not care to go the extra mile in informing consumers. I decided to open up my show to donations, and this has proven a more sound model for my business. I hope you’ll tune in at http://kclive.gb4.us and participate in the Kevin’s Consulting movement. It is possible to keep the world safe, one computer at a time.
One final note should be made. I’ve been blind from birth and pulled all of this off on my own!
National Federation of the Blind of NJ’s 10th Annual
After the Holidays Party
Saturday, January 5, 2019
1:00 pm to 5:00 pm
Knights of Columbus Hall 94 Bridge Street, Belleville, NJ
Access Link accessible Cross Street: Belleville Avenue
$25 per adult; $15 for children 6-12 years; free for children 6 & younger
Please include a separate sheet with attendees’ names & phone numbers.
All payment must be received no later than December 31, 2018
.
Make check payable to NFBNJ and mail to: Joe Ruffalo, President/NFBNJ
254 Spruce Street, Bloomfield NJ 07003
For additional information call Joe at (973) 743-0075.
We’ll have door prizes, a sing–along, & a special appearance by jolly old Santa!
Special note: If you would like an attendee to receive a gift from Santa,
please bring a wrapped gift labeled with the name of the recipient.
MISTLETOE MAGIC MENU
Holiday Tossed Garden Salad with Vinaigrette Dressing
Chicken Savoy, Eggplant Rollatini, Meatballs, Pasta with Vodka Sauce
Assorted Cold Cuts and Potato Salad
Chicken Fingers
Rolls and Butter
Homemade Holiday Desserts
Coffee, Tea and Assorted Soft Drinks
Cash bar will be available.
Please join us in celebrating the holiday season!
GRANT WRITING?? YES, YOU CAN DO IT!
By Ellen Sullivan, Chair of Fundraising & Grant Writing Committee
with Brian Mackey, NFBNJ Treasurer
Editor’s Note: Ellen is a recent “transplant” from Delaware, where she was an active member of the NFB Affiliate there. Ellen holds undergraduate and graduate degrees in biology and pharmacology, and worked in the pharmaceutical industry for 15 years. Brian has been an active leader and officer in the New Jersey State Affiliate for many years. He is the owner of Mackey Enterprises, a data entry, bookkeeping and web design business. The NFBNJ welcomes your ideas for potential opportunities to obtain grant funding. Please contact Joe Ruffalo at <mailto:nfbnj1 at verizon.net> nfbnj1 at verizon.net to share your suggestions!
Upon arrival in the Garden State in February 2018, I immediately reached out to NFBNJ President Joe Ruffalo to find out how I could get involved in the National Federation of the Blind of New Jersey. I had been a Chapter and Affiliate Secretary in Delaware, and was eager to join the Jersey Affiliate. When Joe realized my fondness for fundraising, he suggested I attend the affiliate’s upcoming leadership building seminar.
The seminar focused on strategic planning and was led by NFBNJ board member Mary Fernandez. My teammates and I on the New Ways to Fund Raise Team explored unique fundraising ideas, such as the fact that New Jersey is a hub for pharmaceutical companies. Because I’d worked for the pharmaceutical industry for many years, I offered to develop an action plan focused on this industry. Using Mary’s template, I began developing my action plan.
Each of the four grant writing workshops I’ve attended through the NFB has built upon the last. The most valuable workshops for me were the ones presented by Seth Lampkin at the 2017 and 2018 national conventions. In writing my action plan, I carefully considered Seth’s guidance and focused on two key points:
1. Know what you want to fundraise for, and
2. Find a grant that is a good fit for your organization.
I immediately thought of our BELL Academy. BELL is the Braille Enrichment for Literacy and Learning program that provides Braille instruction for children over the summer. I had participated as a project coordinator and blind mentor in Delaware’s 2017 Academy. It was a terrifically rewarding experience, even though we were strapped to make things happen on a very limited budget. In New Jersey, I learned, the BELL Academy was going to have to hire a certified Braille teacher from another affiliate and pay salary, room and board. If we were successful at securing grant funding, we might be able to stay within budget.
I decided to focus my efforts on the pharmaceutical companies in New Jersey that sold products related to vision or diseases that affect vision. I started with a search in alphabetical order that revealed my first targets: Allergan and Bausch + Lomb.
I then needed to find a way to get into their Community Giving websites. With the help of President Joe Ruffalo, we sent a letter to Bausch + Lomb and they gave us a “key” to the Bausch Foundation, and so began the Bausch + Lomb grant process. One of my nephews works at Allergan, and he told me that the company is very “active and generous in their support.” He encouraged me to apply, and then reached out to someone within the company and provided me with a contact. Again, the NFBNJ was given the opportunity to submit a proposal for grant consideration. These words from Joe Ruffalo, and credited to David DeNotaris, echoed in my head: “You need to friend raise before you can fund raise.”
I reread my notes from Seth’s grant writing seminar:
1. Always read the grant guidelines very carefully
2. Gather the information you’ll need
3. Answer all of the questions asked – 100 percent of them! This is imperative! Even if they don’t apply to your program; explain why. A “blank” may get your grant request thrown out early in the review process.
As I read the guidelines, I noticed that the Bausch Foundation allowed for me to put forth two ideas. We decided to request funding for both the BELL Academy and the state convention, as both programs have a major impact on blind and visually impaired people in our state. Joe, Affiliate Treasurer Brian Mackey and I began the writing process. Brian provided the typically needed documentation, such as the 501(c)(3) designation letter from the IRS, tax returns (Form 990), Employer Identification Number (EIN), the organization’s mission and history, a listing of board members, current activities, the organization’s budget, testimonials, and success stories from past programs.
We also paid close attention to Seth’s recommendation to “Always know the cycle time for the grant you are applying for and meet all deadlines,” completed the grant and moved on to Allergan.
Allergan allowed a request for one program. With Joe’s guidance, we selected the BELL Academy. Our initial application was accepted, and then we were invited to complete the grant process, which meant appending all the financial information and organizational information described above and certifying that we would use the funds only for the stated purpose.
On July 13 we received notice from the Bausch Foundation that we had been awarded a $5,000 grant, which we would split between the BELL Academy and the state convention. The Bausch Foundation had saved the day for our BELL Academy!
On August 24, Joe was notified that we had also been awarded a $5,000 grant from Allergan! This money is now slated for our 2019 BELL Academy and will allow us to supplement our Academy with some unique orientation and mobility day trips that we know the children will enjoy.
While these two grants yielded successful outcomes, that’s not always the case. As I remember Seth’s advice: Rejection is part of the process, and yes, I faced it, as well. I attempted to apply for two additional grants, but was unable to reach the right “folks” to allow me into the “Community Giving” websites. If you get so far as to apply and get a rejection letter, still be courteous and follow up with a thank you letter. Finding out “why” you were rejected can be very valuable in applying another time. Remember: “No” does not mean “Never”! I follow this optimistic advice.
The NFBNJ has sent both Allergan and the Bausch Foundation a thank you letter, and we invited the Bausch Foundation to attend this year’s state convention banquet. In addition, we have followed up with a report, pictures and a video from the 2018 NFBNJ BELL Academy. Bausch will also be included as a 2018 Sponsor in our state convention program, and both organizations are now included as sponsors on our website. Next year we will provide Allergan with the details of how their $5,000 grant impacted our 2019 BELL Academy. We will always be grateful to the generosity of these two companies and their many employees for the support they have provided us.
It is important to note that the NFBNJ chapters and divisions do not have their own 501(c)(3) certificate. Therefore, all grant proposals must go through Affiliate President Joe Ruffalo for review and approval prior to submission. All funds received on behalf of a chapter or division will be received by the affiliate treasury for depositing. Once the funds have cleared, they are then disbursed to the chapter or division. The job of the National Federation of the Blind of New Jersey is never done, and we will continue to apply for grants to support the programs that mean so much to those we serve.
NFBNJ’S BELL PROGRAM: A VERY SUCCESSFUL 5TH YEAR!
By MaryJo Partyka
Editor’s Note: MaryJo Partyka is a lifetime Braille user. A retired social worker, she is president of the NFBNJ Braille Division and president of the Capital Chapter. She is active in several other divisions, as well.
Two weeks of fun, field trips, and above all, plenty of reading and writing Braille capped off the fifth annual BELL Academy sponsored by the National Federation of the Blind of New Jersey. BELL stands for Braille Enrichment through Literacy and Learning and is intended for blind and low vision kids ages 4-12. The curriculum is designed by the National Federation of the Blind and is used in BELL programs nationwide. The New Jersey program was once again held at the Puerto Rican Association for Human Development, Inc. (PRAHD), in Perth Amboy, NJ.
“We don’t want our kids to lose what Braille skills they learned during the past school year,” said Joe Ruffalo, president of the NFBNJ and part of the BELL team. “We want to make learning fun, so we expect the children to learn more Braille and practice some daily living skills.”
Six youngsters from kindergarten through fifth grade enrolled in this year’s BELL Academy. They created Braille on Perkins Braillewriters, the iconic manual Braille typewriter, as well as with the individual slates and styli each received for personal use.
This year’s teacher was Sylvia Reid, from Delaware, an instructor of Braille, academic subjects and daily living skills at the Center for the Blind in Chester, PA.
The students completed Braille worksheets each day, and their parents or guardians were coached on how to help the children maintain Braille fluency. Simple science experiments in class became Braille lessons, as each student was given only one of the steps in the project, in Braille. Students then shared the steps aloud and worked as a team to complete the experiment.
The sleep shades familiar to NFB members became “learning shades” as the kids learned non-visual techniques for safely pouring liquids, and preparing and cutting sandwiches for their lunch.
The students went on two field trips. First, they visited a blind woodworker, Tony Pasquale, in Short Hills, who has an extensive model train collection. The students were fascinated with the trains, and Tony helped each of them construct a flower box to present to their parents or guardian on BELL graduation day. The second week included a visit to the Perth Amboy Fire Headquarters, where each student received a book about fire safety. The instructors at the firehouse talked to them about how fire is started and what to do if a fire starts at home. One of the firefighters on duty demonstrated a speedy slide down to the first floor of the building in response to a fire alarm.
All activities were designed to convey to the children the NFB philosophy of using non-visual techniques, confidence, independence and self-determination.
Members of this year’s BELL team included: Joe Ruffalo, president of the NFBNJ State Affiliate; BELL Coordinator Mary Jo Partyka, president of the Braille Division; Ellen Sullivan, State Affiliate secretary; and Linda Melendez, president of the Sports & Recreation Division. In addition, a host of volunteers ensured individual attention for each student: Michael Halm, Rosa Santiago, Jasmine Ortiz, Rick Fox, Debbie Bloomer and Annemarie Cooke.
BELL Team members are grateful to PRAHD Director Kim Rios and the staff for the extra effort they put forth to make this year’s BELL Academy successful. They also allowed Barbara Shalit and Barbara Grames to deliver materials and equipment prior to the first day of BELL.
We are extremely grateful to the Bausch Foundation and to the Chester, Nutley and Bloomfield Lions Clubs, as well as our families, friends, and members of our affiliate divisions and chapters for their financial contributions which made this year’s BELL Academy possible.
WHY GET INVOLVED?
By Bea Oliveti
Editor’s Note: Why get involved? is a new column in The Sounding Board. Our aim is to showcase our members living the lives they want and how that raises the expectations of others around them. Our first columnist is Bea Oliveti, a member of the Northeast Chapter. Bea is a 2002 graduate of Ramapo College, where she majored in business management. She works for the West New York Building Department.
In 2008, I called David DeNotaris, a leader in the Federation, with questions pertaining to the skills and techniques of blindness. David provided information about the Northeast Chapter of the National Federation of the Blind of New Jersey. The Federation changed my life by raising my expectations to believe that I was the one who could transform my dreams into reality. They wanted to know how they could assist me to live the life I want! Throughout my years in the NFBNJ, I’ve met many members that have become my friends. I’ve learned life-altering skills, such as how to take New Jersey Transit’s Access Link paratransit system, and how to use an iPhone with voiceover. I love attending events such as the national and state conventions, the chapter and the affiliate holiday parties, our Northeast Chapter meetings, and the educational, motivational and inspirational fundraising activities.
I had the honor of serving as state secretary of the New Jersey Affiliate for several years. Not only did this opportunity help strengthen my interpersonal and computer skills, but, as a result, I was able to participate in a leadership/membership engagement weekend conference at the National Office in Baltimore. During my time as secretary, I also served as program director for ThruOurEyes, an internet radio show featuring the affiliate president as host. This experience enabled me to interact with many national leaders within the Federation.
Another life-altering experience as a result of joining the NFB is that I met a wonderful woman by the name of Jane and her family. Jane imparted to me useful technology skills such as how to use an iPod touch and the NLS (National Library Service) talking book player. I'm blessed to know Jane and the members throughout the country and state. We are a Federation family.
Another awesome thing that happened in my life as a result of making the acquaintance of my Federation family is that, as a result of attending events with me, my family was able to see how other blind people, in addition to myself, can become successful through training. I'm forever grateful to my Federation family for unlocking my potential, which now allows me to share the gift of the Federation and to live the life I want through training and advocacy.
The members believed in me before I believed in myself. My advice is to attend national and state conventions, locate a chapter, attend the meetings, get and stay involved, and share the gift of the Federation with others.
NFBNJ CONTACT INFORMATION
National Federation of the Blind National Office
President Mark Riccobono 410-659-9314 officeofthepresident at nfb.org <mailto:officeofthepresident at nfb.org>
NFB State Affiliate
President Joseph Ruffalo 973-743-0075 nfbnj1 at verizon.net <mailto:nfbnj1 at verizon.net>
1st Vice President Mary Jo Partyka 609-888-5459 choirnfb at gmail.com <mailto:choirnfb at gmail.com>
2nd Vice President Dan Facchini 201-906-8655 danfb at verizon.net <mailto:danfb at verizon.net>
Secretary Alice Eaddy 856-765-0601 nfbnj.secretary at aol.com <mailto:nfbnj.secretary at aol.com>
Treasurer Brian Mackey 610-750-6765 bmackey88 at gmail.com <mailto:bmackey88 at gmail.com>
Board Members Linda DeBerardinis 856-735-5559 ljdeber3 at comcast.net <mailto:ljdeber3 at comcast.net>
Jane Degenshein 973-736-5785 jdegen16 at comcast.net <mailto:jdegen16 at comcast.net>
Mary Fernandez 732-857-7004 mary.fernandez at duke.edu <mailto:mary.fernandez at duke.edu>
Veronica Gaspa 434-989-1868 Veronica.gaspa at student.shu.edu <mailto:Veronica.gaspa at student.shu.edu>
Linda Melendez 732-421-7063 lindamelendez220 at gmail.com <mailto:lindamelendez220 at gmail.com>
NFBNJ Chapters – Meeting dates, times & available at www.nfbnj.org <http://www.nfbnj.org>
At Large Joe Ruffalo 973-743-0075 Nfbnj1 at verizon.net <mailto:Nfbnj1 at verizon.net>
Capital Mary Jo Partyka 609-888-5459 choirnfb at gmail.com <mailto:choirnfb at gmail.com>
Central Jersey Mac Biggers 801-916-9753 macbiggers at yahoo.com <mailto:macbiggers at yahoo.com>
Garden State Ryan Stevens 856-240-1497 RYSteve at comcast.net <mailto:RYSteve at comcast.net>
Northeast Dan Facchini 201-906-8655 danfb at verizon.net <mailto:danfb at verizon.net>
Northern Rick Fox 973-743-6107 richardfox1 at comcast.net <mailto:richardfox1 at comcast.net>
South Jersey Shore Phil Harrison 609-788-0890 pbharrison39 at comcast.net <mailto:pbharrison39 at comcast.net>
NFBNJ Divisions
Blind Students Vee Gaspa 434-989-1868 Veronica.gaspa at student.shu.edu <mailto:Veronica.gaspa at student.shu.edu>
Braille Division Mary Jo Partyka 609-888-5459 choirnfb at gmail.com <mailto:choirnfb at gmail.com>
DeafBlind Division Alice Eaddy 856-765-0601 Cheiro_alice at aol.com <mailto:Cheiro_alice at aol.com>
Diabetes Action Network Ed Godfrey 856-628-3657 edgodfrey1957 at gmail.com <mailto:edgodfrey1957 at gmail.com>
Guide Dog Users Dan Facchini 201-906-8655 danfb at verizon.net <mailto:danfb at verizon.net>
Parents of Blind Children Carol Castellano 973-377-0976 blindchildren at verizon.net <mailto:blindchildren at verizon.net>
Senior Blind Jane Degenshein 973-736-5785 Jdegen16 at comcast.net <mailto:Jdegen16 at comcast.net>
Sports & Recreation Linda Melendez 732-421-7063 lindamelendez220 at gmail.com <mailto:lindamelendez220 at gmail.com>
Technology Jane Degenshein 973-736-5785 Jdegen16 at comcast.net <mailto:Jdegen16 at comcast.net>
Programs, Projects & Committees
Adopt Adaptive Equipment Joe Ruffalo 973-743-0075 Nfbnj1 at verizon.net <mailto:Nfbnj1 at verizon.net>
BELL Academy Mary Jo Partyka 609-888-5459 choirnfb at gmail.com <mailto:choirnfb at gmail.com>
Blind Children’s Resource Center Carol Castellano 973-377-0976 blindchildren at verizon.net <mailto:blindchildren at verizon.net>
Blind Merchants Dan Facchini 201-906-8655 danfb at verizon.net <mailto:danfb at verizon.net>
Braille Mentoring Mary Jo Partyka 609-888-5459 choirnfb at gmail.com <mailto:choirnfb at gmail.com>
Fundraising/Grant Writing Ellen Sullivan 302-658-2268 ems553 at comcast.net <mailto:ems553 at comcast.net>
GreenDrop Linda DeBerardinis 856-735-5559 Ljdeber3 at comcast.net <mailto:Ljdeber3 at comcast.net>
HAVA: Help America Ryan Stevens 856-240-1497 RYSteve at comcast.net <mailto:RYSteve at comcast.net>
to Vote Act Liaisons Anthony Lanzilotti 609-361-3038 Tti777 at gmail.com <mailto:Tti777 at gmail.com>
KNFB Reader Liaison Rick Fox 973-743-6107 Richardfox1 at comcast.net <mailto:Richardfox1 at comcast.net>
Legislative Coordinator Ryan Stevens 856-240-1497 RYSteve at comcast.net <mailto:RYSteve at comcast.net>
Anthony Lanzilotti 609-361-3038 Tti777 at gmail.com <mailto:Tti777 at gmail.com>
Liability Insurance Phil Harrison 609-545-8575 pbharrison39 at comcast.net <mailto:pbharrison39 at comcast.net>
Membership Engagement Rick Fox 973-743-6107 Richardfox1 at comcast.net <mailto:Richardfox1 at comcast.net>
NFB-NEWSLINE® Jane Degenshein 973-736-5785 Jdegen16 at comcast.net <mailto:Jdegen16 at comcast.net>
PAC Plan Coordinator Mac Biggers 801-916-9753 macbiggers at yahoo.com <mailto:macbiggers at yahoo.com>
Parliamentarian Ryan Stevens 856-240-1497 RYSteve at comcast.net <mailto:RYSteve at comcast.net>
Public Relations/Press Corps Alice Eaddy 856-765-0601 Cheiro_alice at aol.com <mailto:Cheiro_alice at aol.com>
Resolutions Committee Ryan Stevens 856-240-1497 RYSteve at comcast.net <mailto:RYSteve at comcast.net>
Scholarship Committee Mary Fernandez 732-857-7004 mary.fernandez at duke.edu <mailto:mary.fernandez at duke.edu>
Social Media Coordinator Zoraida Krell 201-638-3418 krellbz at gmail.com <mailto:krellbz at gmail.com>
Sounding Board Kathy Gabry 201-998-9427 Specialk38 at aol.com <mailto:Specialk38 at aol.com>
AnneMarie Cook 609-859-4084 aec732 at gmail.com <mailto:aec732 at gmail.com>
Mary Jo Partyka 609-888-5459 choirnfb at gmail.com <mailto:choirnfb at gmail.com>
Barbara Shalit 201-213-2885 barbart at tullensound.com <mailto:barbart at tullensound.com>
Spanish Committee Rosa Santiago 201-892-6946 rosa.santiago901 at gmail.com <mailto:rosa.santiago901 at gmail.com>
Vehicle Donation Program Andrew Rees 732-659-6002 amrees567 at gmail.com <mailto:amrees567 at gmail.com>
Webmaster Brian Mackey 610-750-6765 webmaster at nfbnj.org <mailto:Bmackey88 at gmail.com>
White Cane Committee Jane Degenshein 973-736-5785 Jdegen16 at comcast.net <mailto:Jdegen16 at comcast.net>
Brian Mackey 610-750-6765 Bmackey88 at gmail.com
Deadline for the Spring 2019 issue: March 15, 2019
CHECK US OUT ON THE WEB AT
<http://www.nfbnj.org> www.nfbnj.org <http://www.blindchildren.org> www.blindchildren.org
To receive The Sounding Board and other information via e-mail,
please contact Ellen Sullivan at <mailto:ems553 at comcast.net> ems553 at comcast.net
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