MISSION

To promote independence and opportunities for all people with vision impairments.

VISION

To continue to be recognized as the leading advocacy organization for people with vision impairments in Pennsylvania. The aim of all our efforts is to encourage and assist people in achieving their potential as valued members of society. PCB assistance, advocacy, and encouragement will be carried out in such areas as, but not limited to, all aspects of accessibility, transportation, education, employment, entertainment, recreation, and quality of life.

The PCB Advocate is available in large print, braille, audio cartridge, and email. Send changes of address or format preference to the PCB office. Contents are available to the public via pcb1.org and the PCB Information Line at 773-572-6314.

EDITOR’S NOTE

Articles in this publication reflect the views of the individual writers. They do not necessarily represent the views and policy of PCB.

EDITORIAL TEAM

Editor in Chief: Will Grignon

Copy Editing: Rebecca Holland, Sue Lichtenfels, Lisa Salinger, and Irene Rehman

Audio Production: AccessiDocs Team

Braille Edition: Horizons for the Blind

SUBMITTING ARTICLES

If you wish to submit articles for consideration, submission deadlines are:

March 1, Spring

June 1, Summer

September 1, Fall

November 20, Winter

Email articles to: advocate@pcb1.org

Send all inquiries to: Will Grignon

wgrignon13@gmail.com

727-564-9759

2022 Declared Board Candidates, by PCB Nominating Team

Proposed Amendments to the PCB Bylaws for the 2022 Convention, by Parliamentary Team

Riddle Bits: Are You Ready for the Challenge? by Tony Swartz and Blair Wissinger

Now What? Assisting Your Loved One through Vision Loss, by Sue Lichtenfels

It’s the Not-So-Newly-Blind Game! by PCB Communications Team

Can You Sing it? by Mary Ann Grignon

K F P: Three Positive Attributes, by Chris Hunsinger, President

When Help Is Needed, by Jule Ann Lieberman and Vision Loss Resource Team

Percy – August 28, 2010 to August 22, 2022: He Touched Everyone! by Mary Ann Grignon

When There’s No Chance to Say Goodbye, by William H. Grignon

My Improv Journey, by Sue Lichtenfels

What Piano lessons taught me about self-reliance, perseverance, and life, by Rebecca Holland

Underwriting Contributions

PCB Teams and Leaders

Chapter/Affiliate Presidents

PCB Board of Directors

2022 Declared Board Candidates

By PCB Nominating Team

The PCB Nominating Team has been searching for candidates who want to be elected to the PCB Board of Directors this fall. Five individuals have expressed their interest for the four available positions. In alphabetical order, they are as follows:

William Grignon, PAGDUS (incumbent)

Debbie Hill, Golden Triangle

George Holliday, PAGDUS

Nichole Keck, Keystone

Sandy Marsiglia, At-Large (incumbent)

Each of these candidates has recorded a statement to be shared with the organization.

Statements are posted to Box 2 of the PCB Information Line at 773-572-6314; on the digital cartridge following this edition of The PCB Advocate; and on the candidate page of our website at http://pcb1.org/conference/candidate-statements/.

In accordance with traditional protocol, the Nominating Team will announce its slate of four recommended candidates for the four board positions. This will be released via PCB communication channels on September 15. Candidates on the official slate will automatically be nominated during the election. All others interested in running for a board position (both declared and undeclared candidates) can be nominated from the floor of the convention.

The election will take place Saturday afternoon, October 29, 2022, during the business meeting of the PCB virtual Conference.

When you register for the Conference, you will be provided with the connection details to join the business meeting. Should you have any questions about the election process, reach out to Sue Lichtenfels, PCB Nominating Chair at 412-480-9696 or sueperlative73@gmail.com.

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Proposed Amendments to the PCB Bylaws for the 2022 Convention

By Parliamentary Team

Proposed amendment 1

Article IV: Membership

Section 2. Chapter/Special Interest Membership

CURRENT TEXT:

Each chapter and special interest affiliate shall determine its own membership dues and collection process.

PROPOSED TEXT:

Each chapter and special interest affiliate shall determine its own membership dues.

Rationale:

Currently, the Bylaws are in conflict. Here, the Bylaws recognize that chapters and special interest affiliates may determine their own collection process, but, further along, the Bylaws require members to pay the Treasurer of their chapter or special interest affiliate. This proposed amendment does away with that contradiction.

Proposed amendment 2:

Article IV: Membership

Section 4. Junior Membership

Current text:

Persons under eighteen years of age who subscribe to the objectives of this organization are eligible to become junior members. Junior members may participate in discussion but may not vote nor hold office.

Proposed text:

Persons under eighteen years of age who subscribe to the objectives of this organization are eligible to become junior members of a chapter or special interest affiliate, but may not belong as an at-large member. Junior members may participate in discussion but may not vote nor hold office.

Rationale:

Junior Members would benefit most from the structure, support, and encouragement of a chapter or special interest affiliate. This is especially true if PCB does not develop and sustain a viable mentorship program.

Proposed amendment 3:

Article IV: Membership

Section 9. Dues

CURRENT TEXT:

The annual membership dues for the Pennsylvania Council of the Blind shall be an amount recommended by the Board of Directors and approved by the membership at an annual convention. Dues are payable in advance and credited to the first day of January of each year. Dues are payable by members of chapters and special interest affiliates to their chapter or affiliate treasurer. An officer of the chapter or affiliate shall submit the names of its paid members along with their dues to the PCB Office.

Dues for junior members shall be fifty (50) percent of dues paid by adult members.

Dues for non-profit agency members shall be two (2) times the dues paid by adult members.

Dues for for-profit agency members shall be (3) three times the dues paid by non-profit agency members.

Dues are payable by at-large members, non-profit agency members, and for-profit agency members directly to the PCB Office.

PROPOSED TEXT:

The annual membership dues for the Pennsylvania Council of the Blind (for members of chapters and special interest affiliates, as well as for at-large members) shall be an amount recommended by the Board of Directors and approved by the membership at an annual convention.

Dues for junior members shall be fifty (50) percent of dues paid by adult members.

Dues for non-profit agency members shall be two (2) times the dues paid by adult members.

Dues for for-profit agency members shall be (3) three times the dues paid by non-profit agency members.

Dues are payable in advance and credited to the first day of January of each year.

Members of chapters and special interest affiliates have several ways of paying their annual dues:

To a member of their chapter or special interest affiliate appointed to collect dues and to submit PCB dues and the contact info (names, addresses, emails, and phone numbers) of all dues-paying members to the PCB Office;
To the PCB Office (along with the member’s updated contact information), which will record all dues submitted and inform the PCB Treasurer as to the amounts to be remitted to the chapter or special interest affiliate; or
To an online form on the PCB website, which will also record the member’s updated contact information and generate amounts to be remitted by the PCB Treasurer to the chapter or special interest affiliate.

At-large members, non-profit agency members, and for-profit agency members may pay their dues directly to the PCB Office or to an online form on the PCB website.

Rationale:

This proposed amendment attempts to recognize that members prefer to pay their dues in several ways. Traditionally, members have paid their dues directly to someone in their chapter or special interest affiliate, usually the Treasurer. However, many peers now prefer to use credit/debit cards or prefer to pay online. The online form mentioned in this proposed amendment shall most likely be developed by the Technology Team as part of its PCB website revamp.

Proposed amendment 4:

Article VI: Powers and Duties of the Board of Directors

Section 5. The State Conference and Convention

Current Text:

The time and place of an upcoming Conference and Convention of the Pennsylvania Council of the Blind shall be recommended by the Conference and Convention Site Committee when this committee makes its report at an annual convention. A majority vote of the members present, and voting shall then determine the date and place of the next Conference and Convention.

Proposed text [Strike Section 5 from Article VI and create new Section 4 under Article VII: Powers and Duties of the Convention, Section 4. The Date, Place, and Manner of the State Conference and Convention]

The date, place, and manner (i.e., in-person, virtual, or hybrid) of an upcoming Conference and Convention of the Pennsylvania Council of the Blind shall be recommended by the Conference and Convention Site Committee when this committee makes its report to the membership at an annual convention.

A majority vote of the delegates and members present, and voting shall then determine the date, place, and manner of the next Conference and Convention.

Rationale:

Current practice, relying on a vote of the general membership, to determine the date and place of the next convention does not comply with the current Bylaws.

The challenge arises from the ambiguity attendant on the word “members” in the clause: “A majority vote of the members…”

PCB has chosen to interpret “members” to be the general membership present and voting at the convention, but this provision is set forth under Art. VI: Powers and Duties of the Board of Directors, an article that deals exclusively with the “powers” and “duties” of the Board of Directors, including determining the date and place of the next convention.

Hence, this proposed amendment attempts to remove the ambiguity and bring the Bylaws in line with current PCB praxis by moving this Section to Art. VII: Powers and Duties of the Convention and by expressly resting authority in the general membership to determine the date, place, and manner of the next convention.

The proposed amendment also adds “manner” to the determination of the next convention; to allow for discussion and decision as to whether the next convention will be in-person, virtual, or hybrid.

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Riddle Bits: Are You Ready for the Challenge?

by Tony Swartz and Blair Wissinger.

You may remember that during last year’s conference Blair Wissinger and I hosted Thursday evening’s entertainment with a game of Jeopardy. This year Blair and I return with another Thursday evening entertainment with the game of Riddle Bits.

What’s Riddle Bits you ask? We’ll be looking for four contestants and a backup or three to play the game that’s taking the country by storm. Ok, perhaps taking the country by storm is just a slight bit of exaggeration, since Blair and I just made the game up over the last month or two. As far as its popularity though, let’s just say that I do wish the television network executives would stop calling Blair and me about it. Tony Swartz will serve as host and Blair Wissinger will serve as cohost, score keeper, and game judge.

Once you look over these rules, we’re sure that you’ll be interested in participating as a contestant, so please consider indicating your interest on the conference registration form.

Once the conference registrations start coming in, Blair and I will select from the many interested registrants, six conference attendees, four possible contestants and three back up contestants. Please understand that contestants will be selected only from conference registrants and must be available to participate on Thursday evening October 27th at approximately 8:30 PM. Each of the selected contestants will be contacted by phone in October to discuss their participation. Here are the game rules and game show procedures.

Four contestants will face off against each other to solve two rounds of riddles.
The game will consist of two rounds of sixteen riddles.
Each contestant by turn is given a riddle to solve.
The order in which contestants are presented their riddle for each round will be determined by a drawing by the hosts proceeding the event.
The order of riddle presentation to contestants will differ for rounds one and two.
Each contestant is given a total of thirty seconds to solve the riddle presented to them.
Once the riddle is presented to each contestant, a softly-ticking timer will sound in the background with a buzzer sound at the end of the time allotted.
If a contestant solves the riddle within the allotted thirty seconds without a hint the contestant receives a full five points.
Once a contestant considers an answer to the riddle for fifteen seconds, the host then offers the contestant the option of a hint. If the contestant accepts the option of a hint and goes on to solve the riddle within the remaining fifteen seconds, the contestant receives three points.
If a contestant fails to solve the riddle, the riddle is passed on to the next contestant, who is granted another ten seconds to solve the riddle. Should this contestant solve the riddle, the contestant receives two points. If, however, this contestant either fails to solve the riddle or declines the riddle, this contestant is then given the next riddle assigned to their turn and the game continues.
A contestant who chooses to accept an unsolved riddle from a previous contestant and solves the riddle, receiving two points, is then presented a new riddle to solve. Thus, it is possible for a contestant to win points for two riddles, two points from a passed-on riddle, and points for the riddle assigned to the contestant’s turn.
After the fourth and twelfth riddles of each round, the host will pause the game for a moment to speak with a contestant, asking something interesting about the contestant’s life.
After the first sixteen riddles are played, round one is completed and the contestant who has won the most points is declared the winner of the first round. Should there be a tie, a riddle is then presented to the winners, and whichever of the tied contestants first solves and calls out the answer to the riddle is declared the winner of the first round. Twenty seconds are allowed for the run-off round. Should the riddle go unsolved, another riddle is presented, and another twenty-second run-off round is held. Runoff rounds are held until a winner is determined.
Between rounds one and two, a two-minute commercial/announcement is played.
Round two proceeds with the same rules of round one, and a winner of round two is declared.
If the winner of rounds one and two are the same contestant, the contestant is declared the Riddle Bits champion and wins the grand prize.
If there are different winners of rounds one and two, a three-riddle run-off is held, with the same run-off rules as round one. The contestant winning two out of the three riddles presented is declared the Riddle Bits Champion and wins the grand prize.

These game rules will be tested over Zoom by several members of the Conference Program and Planning Team. While we don’t expect any of the rules to be changed. We may find it necessary to tinker with the time allotted to solve each riddle.

With the exception of the run-off rounds, the riddles chosen are considered to be categorized at the easy to moderate level.

Lastly, you’re probably wanting an example of the kind of riddle that will be asked. Ok, here goes.

Riddle: What’s celebrated only when broken?

Answer: An athletic record. Of course, we would except a record, world record, or something similar; see! and you thought it would be too hard for you. Now, we wouldn’t do that would we?

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Now What? Assisting Your Loved One through Vision Loss

By Sue Lichtenfels

In the summer of 2018, while President of PCB, I wrote an article for this publication where I announced a pending project. Here’s how I described the project, “Targeted for the sighted friends and family, the booklet will be a collection of tips and strategies that we as peers can offer for ways to adapt experiences and environments, so they are more accessible for the person with vision loss. The goal is to provide ideas that can easily and immediately be implemented while awaiting formal rehabilitation training. The booklet will address such things as organizing, labeling, lighting, contrast, adaptive devices, sighted guide technique, medication management, available services, etc.”

While it’s taken us four years to bring this booklet to fruition, the need for the booklet has not waned. Consider the results of the BBVS customer experience survey we conducted in early 2019. At that time, 29% of respondents indicated they waited six months or more from the date of application to the time they received an actual service. Since that survey, BBVS service delays have been exacerbated by the “Close of Selection” process due to budget constraints, and COVID-19 service reductions. Likewise, ophthalmologists who diagnose a patient with severe or permanent vision loss rarely offer any kind of adjustment to blindness information. PCB’s new resource can give people newly diagnosed with vision loss a start on making the necessary adaptations that will help them live independently regardless of how much vision remains.

I invite you to learn more about the contents and distribution strategy for “Now What? Assisting Your Loved One through Vision Loss.” It will be presented on Friday, October 28 at 6:30 PM Eastern during the PCB Conference and Convention. We need your help to share the news about this amazing new resource, so please mark your calendar to hear this 20-minute presentation.

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By PCB Communications Team

Remember the Newlywed Game? Remember Bob Eubanks? Remember the incredibly young couples bonking each other on the head with their answer cards? Well, on Friday, October 28, at 7:00 p.m., during our upcoming 2022 Conference, you will get to relive those fun-filled memories when you meet our four mixed-vision duos in what we are calling the Not-So-Newly-Blind Game!

Yes, four duos, each with one person with vision loss and one person without vision loss: a husband and wife, a father and daughter, two “close” friends, and a couple of friends whose friendship just might not survive the Game! And, just like the original, contestants will be answering questions in the way they think their partners will answer; finding out just how much or, just how little, they know about each other.

Along with the mixed-vision pairings, questions and answers will focus on vision loss and the assumptions, attitudes, and expectations arising from how each navigate vision loss. It’s all about self-reliance or, perhaps, the lack thereof.

And, after the Game, the PCB Communications Team will host a lively give-and-take with our virtual audience who will have a chance to react to the Game and discuss the funny and not-so-funny personal, relational, and societal forces that shape our experiences as people with vision loss.

See you Friday night!

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Can You Sing it?

By Mary Ann Grignon

Welcome to the 2022 Conference Friday night entertainment, hosted by Mary Ann Grignon, October 28, 9:00 p.m. This year we are going to sing our way into a great time!

Before we get to the game rules, I want to stress that what is most important here is to have fun! Whether you are a songbird, a music enthusiast, or someone who just likes to have a good time, join us for lots of laughter, camaraderie, and some good competition.

Here’s how it works!

We’ll have two rounds with two teams of equal participants in each facing off and a third round with the winners from those first two rounds facing off for the championship and grand prize.

Each round will consist of two different games. In game one, each person on Team 1 will be given a word and in 15 seconds, must sing the portion of a genuine song in which the word appears, no coaching. After each person on Team 1 has had their turn, play moves to Team 2 for the same process.

In game two, play begins with Team 2. The whole team is given the same word and each member is charged with singing a song in which the word appears. Play continues until a player is stumped. Each team is allowed one pass. In the case of a pass, the next person is in play and on it goes, until the team is stumped.

If there is a tie, a lightening round will be played in which each team will choose their best player to face off against their opponent. In the lightening round, a word will be given to each and they will have 10 seconds to come up with a song. the lightening round continues until one or the other fails to come up with a song.

Round two proceeds exactly like round one with Team 3 and Team 4.

The two highest scoring teams from rounds one and two will face off in the championship round and will be played the same way rounds one and two were played.

You will be able to sign up for Can You Sing it at the time you complete your free registration for this year’s Conference and Convention.

Each Can you Sing it candidate will be contacted by phone in October to discuss their participation in the game.

Should you have any questions regarding game participation or require further clarification of game rules, please contact Mary Ann Grignon by email at maryanna0407@gmail.com.

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K F P: Three Positive Attributes

By Chris Hunsinger, President

Kindness, Flexibility, and Patience are three attributes that I hope that I can demonstrate on a regular basis. I don’t always succeed, but striving for success in these three areas can be liberating for anyone.

A little kindness smooths out the bumps in the pathway of life.

Try not to fight with people about things that they have no control over or cannot change.

Don’t carry over those bad feelings from a disappointing encounter to a totally unrelated event because those people weren’t the ones who caused your irritation.

Whenever it is possible, let that customer service person know that you are complaining about the system and not about their work, unless they are just rude to you.

When you need to bring up a complaint or something negative about a friend or colleague, bring up something positive as well.

When you run into a friend or acquaintance you haven’t seen for a while, take the time to ask about what’s happening in their life and think about anything that you can say which could encourage them if it sounds like they could use a boost.

Take the time to help someone, even a stranger. After all, look at how many people have helped you along the way. I’ve always thought that if you are nice and kind to people, they will often be kind to you. Perhaps we can create a kindness revolution.

Now, let’s talk a little about flexibility. I’m not referring to toe touches or yoga. We have just begun the new year. You might say, “What are you talking about? That’s nearly four months away.” Well, all of the school teachers in my family said that the year began in September. They now would change that comment to the year begins in August, based on when school years start now. I never thought of teachers as flexible because I couldn’t usually bend them to my way of thinking even when I just knew that I was right. Imagine that, I didn’t think that I was inflexible.

At some point in my life, the year began at the beginning of baseball season which could have been in February when Spring Training began or in April when the games really began to matter.

Once I started to work, my year began in January because that was when the leave year began, and I really wanted to know how I could best take advantage of those vacation days.

The Federal government’s fiscal year begins in October and ends in September, but the state of Pennsylvania’s fiscal year begins in July and ends in June. Do you have to be at all flexible to deal with these several various kinds of years? Probably not, but what these examples point out for me is that perspective matters, and that we all view life in somewhat different ways. These different perspectives, points of view, and understandings may well make it necessary for us to change how we are doing something at a moment’s notice. We just don’t take enough time to consider the different ways of looking at an issue or problem to adequately cover the best solutions until someone points them out to us, and we actually listen to them and understand their point of view.

I hope that I have grown wiser as I have grown older. I now realize that there are so many different ways of accomplishing goals or just living life well.

Eat Ethiopian food because it tastes good, and it’s a great way to pick up messy food with your fingers. Haven’t we been told for most of our lives to keep our hands out of the food?

Respect other people’s opinions, but correct them if they present opinions as hurtful facts which perpetuate hate and misinformation.

Think about what you might want to do to gain a different perspective or become more flexible.

Finally, there is patience. Believe it or not, I think that I learned patience using public transportation. I just have to wait for the next bus. It does no good to fret and worry about that late bus or that no-show bus, or the one that passed me by. I don’t tend to run for a bus that I am about to miss unless I have the helping arm of someone else who wants that same vehicle. It doesn’t change anything to get angry when a driver forgets to call my stop if I ask him to do so, and he doesn’t do it. Now, I’m not saying that we shouldn’t do anything about these issues, but when these things happen, we should try to work to change things for the future. That may well be why we have real-time information about transit schedules, and it may also be why we have automated stop announcements on buses and trains. Just think, I don’t usually even have to get a little impatient any more about bus routes, schedules, or arrivals because of technology. I don’t have to get paper schedules and route maps when I move because that information is now available to me instantaneously with no intermediary. Now, I have to learn additional patience to make the technology work for me.

In conclusion, I think that I can say with a great deal of certainty that life is a never-ending quest for more Kindness, Flexibility, and Patience. I believe that these three attributes have helped me grow to be a stronger person, and I hope that you will also find this to be the case.

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When Help Is Needed

By Jule Ann Lieberman and Vision Loss Resource Team

“I’ve always depended on the kindness of strangers,” spoken by Blanche DuBois in “A Streetcar Named Desire” the play by Tennessee Williams. This sentiment is true of us all from time to time.

Regardless of whether a person is new to vision loss or has been blind since birth, all of us have experienced times when we need the help of another. These moments can occur as you go about your day, travel outside the home, or when you experience difficulties using your technology on the Internet.

Asking for help is not a sign of weakness; it can be the best course of action for safety or expedience. Success in getting the help you need starts with you effectively communicating your needs. We cannot expect nor would we want others to assume what we need, and it is our job to speak up and provide information that can help others help us.

The public may not recognize that you are blind or have vision loss even when traveling with a white cane or dog guide. Identifying yourself as blind or vision impaired may be a necessary first step. Instead of getting frustrated or angry the next time someone points to X try asking “I am looking for X, am I heading in the correct direction or do I need to turn right or left? I sometimes then add, if pointing like a clock would X be located at 3, 6 or 9 o’clock? In some situations, and depending upon your own spatial awareness and orientation skills, you may find asking if the person can walk with you to get to X. This is especially true when the environment is cluttered and confusing.

Join your peers during our upcoming conference Thursday, October 27 at 7:45 PM for a few more examples and learn how best to manage these experiences.

Once you gain confidence in these advocacy skills, you may find yourself providing information that serves others as well. The next time someone offers help to another blind person they will remember the positive experience they had with you and provide better assistance.

Educating the public supports all who are blind or have vision loss in sometimes unexpected ways.

Recently, I was asked by US Senator Casey, as Chair of the Senate Committee on Aging and Disability, to provide testimony at a committee hearing regarding my own experience as a person who is blind and uses a screen reader to access information and services on federal government websites.

I traveled to Washington DC and was joined by three others who testified on their own experiences or on behalf of clients with disabilities and barriers we encountered with inaccessible federal websites. This advocacy effort provided needed information to improve access to information and services. Senators Casey, Scott, and other Senate Committee members needed to learn what makes a website accessible to us who cannot see the screen well or at all.

Of course, I was a little nervous when describing my experiences to federal lawmakers in such a historical location. On the return train trip back to Philadelphia I was grateful for having practice over many years in advocacy in a variety of situations. The public does not need to understand what it is like to be blind just the assistance or access that is needed.

The Vision Loss Resource team encourages all peers to join us during our conference session to learn how to ask for help and express your needs with confidence.

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Percy – August 28, 2010 to August 22, 2022:
He Touched Everyone!

By Mary Ann Grignon

In early February of 2013, John Bifield, a renowned trainer of guide dogs, then working for The Freedom Guide Dog School, arrived at my home with Percy for a test walk. Percy hopped out of the van, joyfully ran back and forth between my knees, laughing and wagging his tail. John watched us navigate and at the end of our trial walk, he deemed us a perfect pair. A month later I began my training with Percy in earnest.

The nine and a half years that I had Percy at my side, guiding me, loving me, caring for me, and sharing life’s experiences with me, were truly a blessing.

Percy was magic! Everyone with whom he came in contact simply fell under his joyful spell. This includes those who really weren’t dog people or who, like Will, were genuinely afraid of dogs. Parents let their tiny children say hi to him, veterans just wanted to touch him, old people stopped and admired him. Those at my place of employment would come running just to take his picture. To quote one of my friends, “he was a rockstar”.

That’s all well and good, but was he a good guide you ask? He was the best! In nine years of travel together, I can say in all honesty that I was never injured on his watch. If we mis-stepped, it was always because I wasn’t paying attention and, in those cases, I can almost hear him sighing in frustration.

Percy loved baby carrots, apple slices, playing keep away, other dogs, and, ok, I’ll admit it here, sleeping pressed up against me every night.

Some of my fondest memories of Percy are from conferences to which he accompanied me. One memory in particular stands out. I was waiting in line to go into the first-timer event along with Rose Martin and her beautiful guide, Jordan. Another individual was ahead of us with a guide who turned around and barked at Jordan. Percy proceeded to put himself between Jordan and the other pup and barked right back at the stranger. Before that, I’d never seen him protect a friend pup.

Percy had an amazing memory. As you all know, we had conferences in both Harrisburg and Pittsburgh alternately and Percy remembered both hotels and only needed a brief reintroduction to each before he was zipping around like he owned the place. He was patient, loyal, faithful and sometimes mischievous. At one of our banquets, his leash somehow slipped out from under my thigh where I always kept it while sitting at a table for dining. Off he trotted to the next table where he just needed to say hi to Marlett and Tom Reid and the Swartzes. It was Carol Swartz in her sweet way who alerted me to the fact that he had gone visiting. Percy simply loved people and was loved in return.

Here, in Florida, where I live, those who visited for our social nights would argue over who Percy loved best. Of course, the answer is, he loved them all, but he loved me best.

Inexplicably, inconceivably, shockingly, without warning, on August 22nd of this year, my beautiful baby who had zero interest in our pool, fell in and was drowned. I will never know how it happened, all I know is that there is a void in my life, a hole in my heart that cannot be filled.

My most profound gratitude goes out to all who have reached out to me with loving thoughts and kind words in this difficult time. Grief is like a fire one just has to walk through and I am sure I will come out the other side with the support of loved ones and because Percy’s memory demands it of me.

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When There’s No Chance to Say Goodbye

By William H. Grignon

Given our respective life expectancies, most of us assume that we will outlive our guide dogs, but most of us also assume that we will lose them after they retire and pass after a longish decline. This “natural” process is nonetheless heart-rending as we say goodbye to a good and faithful friend, but it is immeasurably and inexpressibly more traumatic when we do not have that chance to say goodbye and our guide dog passes suddenly from a catastrophic illness or, worse, from an accident, or, worst, from the negligence or criminality of others. Indeed, it is this sudden loss of a family member, for many a child, without time to work through the eventual loss, which tears big bloody chunks of our hearts out of our chests and leaves us gasping for sanity amidst an overwhelming tide of crippling despair.

While the loss of a pet is incredibly sad, the loss of a guide dog can be utterly devastating. A handler and their guide dog share a special bond, an empathetic closeness borne of years of training and shared experiences, a deep trust that allows the person with vision loss to walk confidently through life and gives the guide dog a deep sense of head-high purpose and tail-wagging accomplishment. They are indeed a team: a symbiotic working unit of human and canine that requires the deepest trust and rewards each with the deepest assurances. Not just pet and owner, but service animal and handler – a mutual love that feeds their spirits with an abiding devotion.

And to have this deep and abiding connection severed suddenly, violently, without warning can be the worst of losses – a true hell of separation, emptiness, and excruciating despair. No words can describe it. No platitudes can soothe it. No well-meaning practicalities can explain or expunge the raw sense of loss, loneliness, and abandonment.

So, if you are the friend or a loved one of someone who has lost their guide dog suddenly, the best you can do is let them know that you love them, that you are there for them, and that they can count on you to be there to listen, understand, and support them.

If you are the bereaved handler, please be gentle, kind, and patient with yourself. Eat sensibly, get plenty of rest, and take the time you need to “process” your loss.

Yes, “process” might sound like a cold and clinical word, but it encompasses all the emotional, spiritual, rational, and practical exigencies you may encounter after the loss of your guide dog. It also embraces the most human of activities: talk about your loss with people you love and who love you, stay active and avoid isolating yourself in brooding silence, and, if needed, seek professional help.

A trained therapist, while perhaps not specifically familiar with the handler-guide-dog relationship, will nevertheless be trained in coping with and working through loss and grief. Your guide dog school may have someone who can counsel you or, at least, point you in the direction of someone who has experience working with bereaved guide dog handlers. There are also non-profit organizations that provide community support for individual dog-owners, e.g., The Center for Pet Loss Grief, the Association for Pet Loss and Bereavement, and the Pet Loss Grief Resource page on the Best Friends Animal Society website.

Imperatively, overcome the urge to curl up into a little ball and hide from the world. Surround yourself with loving people who wholeheartedly support you when you describe your loss as like losing a best friend, a family member, or a child. These are the people you can trust, and these are the people who will help you heal from your bleak despair. You must honor your grief, give yourself permission to feel the pain that you are feeling, and take the time you need to heal. You might find yourself somewhere on the spectrum of stages of death-and-dying, but know that there is no one-size-fits-all in terms of time or process that works for any one individual and that you might find yourself experiencing one or more of these stages simultaneously or at different moments throughout the day.

While you are taking time to heal, celebrate the life of your guide dog. Talk about them with your loved ones, write a poem, create a memorial to their life of dedication, love, and service. And remember, it’s not only okay but it’s good and healing to laugh, especially if you are recalling some particularly cute or funny thing your dog was wont to do. There is no right or wrong way to do this. Do the thing that means most to you and do not give into feelings of guilt, especially if it is time to get a new service animal: remember, you are not “replacing” your service dog, your service dog will always be special in their own loving way and, besides, you will one day realize that your service dog, who only wanted the best for you in life, is wanting the best for you after they have passed, just as you would have wanted for them if you were the one to pass first.

Eventually, you may welcome a new guide dog into your heart and home. Please know that this transition may be fraught with jagged and conflicting emotions. Be gentle with yourself and your new dog. Remember that your new dog knows nothing about your loss and sadness and may not understand some of the signals you are giving them. To minimize issues during such a transition, be as sure as you can be that you are ready for a new dog. If you still have doubts, it’s better that you wait and do what is needed to heal as fully as possible before transitioning to a new guide dog.

Even though you might feel like your heart is irreparably broken and that your life is irrevocably ruined, you will, over time and with the help of those who love you, heal this pain and find a peace that gives you the space and time to move forward and, hopefully, find a new furry companion who will feed your spirit, give you independence, and make you laugh.

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My Improv Journey

By Sue Lichtenfels

In the spring of 2021, I heard about a newer social media app called Clubhouse. I found an invitation link to join this audio-based platform in an ACB publication. Once registered, I was amazed at all the “rooms” Clubhouse had to offer. It was like walking down a virtual conference hallway with endless topics to explore. I passed rooms focused on gardening, wellness, debate, comedy, business, travel, current events, religion, writing, filmmaking, games, crafting, socializing, blindness/disability matters, etc. And the most incredible aspect, because the app is audio based, no one knew I was blind and, so they did not treat me differently, unlike what usually happens in real life.

When I first registered on the app, one of the interests I indicated was comedy. Two months into my Clubhouse experience, I discovered a room called the JD Lawrence Improv Dramedy Workshop. The workshop was exactly what I was looking for at the time; an opportunity to express the silly side of me without fear of being judged by others. What I didn’t realize at the time was how much improvising would increase my self-confidence.

For approximately ten months, I set my schedule so I could improv every weeknight in the two-hour JD Lawrence room. The leaders of the room taught us the basics of listening, “Yes-and,” making your partner look good, using character voices/accents, and more. Mostly we were matched with a scene partner, and they gave us a scenario to improv. For example, sisters who have not spoken in years and now one must call the other to let her know the mother is on her death bed. That’s all we got, and we had to make up the story as we went, feeding off each other’s lines and emotions. The leaders would then provide constructive feedback to help us see how we could have made the scene better. When we were not running scenes, JD gave us challenge activities like having a conversation but not being able to repeat any words, having a group of people find a rhythm to share in counting to twenty without overtalking each other, or creating a story monologue using the numbers one through ten in order. Unfortunately the creators found a video-based app where they can reach more people, so the workshop on Clubhouse is down to one night a week now.

Fortunately, there are still many opportunities to improv on Clubhouse. Each Saturday morning, I attend a one-hour workshop session from Improv Wizards. I’ve also completed their online course, “Become an Improv Wizard.” I participate in games three times a week from the Lit Comedy Club which are improv focused. Through the Voice Actors Doing Improv Club, scene-based improv rooms run every Thursday, Saturday, and Sunday.

In March of this year, I launched the Voice Actors Doing Improvs Sunday room, aptly called Sunday Night Improv. The room runs from 7:30 PM Eastern to about 11 PM. I generate 50 prompts before each session which are used as the jump off point for two-minute scenes for two people. I love to see how creative people are, so my prompts are usually just a few words such as a movie or song title, an emotion, or a location. They need to create the story together. It’s a fun space where we don’t tend to give constructive feedback unless one of the basic improv rules is trampled upon, such as the actors over-talking each other or negating the story line of the other actor.

Here’s the link to a recording of one of my recent rooms if you’d like to check it out: http://tinyurl.com/SNImprov. Skip forward to the 7:45 minute marker to start with our first exercise.

The next step on my improv journey is to share the world of improv with my blind and visually-impaired peers. I believe improv scene work gives us the creative license to take on challenging, awkward, or scary situations in a safe environment with sometimes-silly, always-supportive partners and the opportunity for do-overs. From self-advocacy to social interactions, daily life conversations to workplace encounters, improv scenarios can prepare us for whatever comes our way. In both scenes and games, we stretch our creativity, make uninhibited decisions, find solutions to challenges, and potentially take on a new persona. Improv allows us to escape to the world of make believe while still providing valuable skills we can transfer to real life. So, please join me for the Improve with Improv session on Friday, October 28 at 2 PM during this year’s PCB Conference. If you plan to actively participate, please indicate so on the registration form.

Ultimately, I would like to start a Zoom-based improv troupe for blind and visually-impaired peers. If you would have any interest in being involved with this effort, please contact me at 412-480-9696 or sueperlative73@gmail.com.

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What Piano lessons taught me about self-reliance, perseverance, and life.

By Rebecca Holland

I remember the first time I ever saw a concert pianist. His name was Andre Watts and he appeared on an episode of Mr. Rogers’s Neighborhood. I was completely enthralled by the sound. I strained my eyes to see his long fingers dance across the keyboard and I moved so close to the television screen that my nose almost touched the glass.

As soon as the episode was over, I rushed to tell my grandmother about the amazing thing I had just experienced. I had never heard such music before. I didn’t grow up in a musical household and none of my family played an instrument.

“Grandma!” I exclaimed. “Can I take piano lessons?”

Her initial reaction was laughter, but when she saw my hurt expressions she responded, “Oh, I’m sorry, dear. I didn’t realize that you were serious. Piano lessons are expensive. I don’t think we can afford it. But you’ll have to ask your mother.”

I waited anxiously all day for my mother to return home from work. I was raised in a single parent home and my mother worked long hours as a nurse at the hospital to support our little family. When I told her about my newfound desire to take piano lessons, she tried to reason with me. “I don’t even know where we would put a piano,” she said. “Why don’t you wait a while and see if you really want to learn? If you still want to learn, we can talk about it when you’re older.”

At the time I was disappointed, but I could understand my mother’s reasoning. Many years later, I finally got the opportunity to take piano lessons. My hours on the bench in front of the keyboard taught me many important life lessons about self-reliance, perseverance, and finding your purpose.

Practice Makes Progress!

I waited for more than a decade before I finally got the opportunity to take my first piano lesson. When I was sixteen years old, I received an electronic keyboard for Christmas. It was only six octaves and the keys weren’t weighted, but I loved that little keyboard with all my heart. In the end, it worked out for the best that I didn’t have a real piano. I quickly realized that I needed more practice than other beginning students.

Although I could already read the treble clef since I had learned to play the flute in elementary school, I couldn’t just open up a piece of music and “sight read” it without practicing. At first, I was disheartened because this is a valuable skill that many musicians have. However, I quickly learned that what I lacked in natural ability I could make up for with practice.

Eventually, I saw progress. By the time I was eighteen, I was able to play some simple hymns and early classical pieces. I was no concert pianist by any stretch of the imagination, but I had learned enough to read from a basic lead sheet and play for my own enjoyment.

Is there a skill that you want to learn in life? It’s never too late and you are never too old! Make time in life for the things that give you joy. Just fifteen minutes a day of working on something you love can make a huge difference.

The hardest part of practicing is making the time to sit down and do it. Life is busy and there always seems to be something else that needs to be done. You can have the greatest piano teacher in all the world, but they can’t do the work for you. You have to be the one to sit down and put in the time.

Do you love to write? Try writing just one paragraph a day! Do you want to learn to knit? Practice for fifteen minutes every evening and see how far you get. Your results will probably surprise you!

Learn what adaptations work for you.

Although I loved music and made practicing a priority, I struggled to read printed sheet music. My nystagmus caused the notes to swim on the page in front of me and my eyes wouldn’t stay focused. I struggled to read the small print in my lesson books.

Through a process of trial and error, I learned what adaptations worked for me. I wish that I would have had another friend who was a visually impaired musician who could have offered me advice. Although I knew musicians who were completely blind and could read braille music, I did not know any other musicians with low vision. The following tips and tricks worked for me. Perhaps you might find them helpful as well:

Large print music and a binder that holds 11”x17” paper: I take the sheet music that I am working on to a local copy shop where I ask them to enlarge it “as big as possible” on paper that is eleven by seventeen inches. Ideally, I like my sheet music to be at least one hundred and twenty percent larger than normal print. I then take this music and put it into a binder that holds 11×17 paper.
Good lighting makes all the difference. Several years ago, my husband got annoyed with me taking all the standing lamps and placing them strategically around the piano. He went to Home Depot and found a strip of three lamps that have super bright bulbs and can be tilted in any direction. He mounted them over the electronic piano I use to practice and it’s made it much easier to read my large print music.
I trust my mind and my ears more than I trust my eyes. Learning basic music theory has been a huge help to me. If I can understand the structure of a piece, I can learn it more quickly. I also like to listen to lots of different recordings of a piece. That way if I’m having a bad vision day, I can practice the sections that I have committed to memory.
Find a knowledgeable and patient mentor or teacher: Playing the piano is complicated and it takes everything from proper posture to correct finger technique. I need to be able to touch a mentor’s hands or have them tell me what finger numbers would work best for a tricky passage.

Everyone experiences their disability differently. No two people are the same. Whether your goal is to graduate from college or learn to cook, there are all sorts of adaptive tools and equipment available. Don’t be embarrassed to use your adaptive tools in public. Most importantly, don’t forget the importance of self-advocacy.

Remember your “Why.”

I love to make music, but I get terrible stage fright. I prefer to make music in the privacy of my own home. But I learned an incredibly important lesson this summer.

I serve two churches as a full-time pastor and the second Sunday in August was scheduled to be our biggest Sunday of the summer. It was “Vacation Bible School Sunday,” and the children were going to perform a play, sing some songs, and share what they learned during our summer program. After the service there was going to be a big luncheon.

I wanted it to be a happy Sunday for everyone, especially the little ones. But there was one huge problem: all of our normal musicians were unavailable! We were anticipating having lots of guests and our regular pianist had a commitment out of town, our praise team wasn’t feeling well, and I couldn’t find anyone else to play the piano. I decided that I would have to play for the service since we couldn’t find another musician.

It was a hot and beautiful Sunday morning. Despite the air conditioning in the sanctuary, I could feel that my palms were beginning to sweat. After the opening prayers, I sat down on the bench and I was so nervous that my hands were shaking. I was glad I couldn’t see all the people gathered in the congregation. I took a deep breath and said a little prayer. Then I asked myself the following questions:

What was the point of all my hours of practice if I couldn’t play a few hymns when it really mattered? What was the point of all my hard work if I couldn’t share my joy with others? Most importantly, WHY was I making music in the first place?

I felt a sense of calm wash over me. I wasn’t trying to be a concert pianist or a rockstar. I wasn’t trying to prove anything. I just wanted to serve God and make sure that the children and their families had a positive experience on this special Sunday.

Although I made a few mistakes, I managed to keep going. Everything turned out fine and I’m happy to report that my performance was entirely unremarkable. I will not be debuting at Carnegie Hall any time soon, but I am a perfectly average church pianist. And deep down in my heart of hearts, that’s all I ever really wanted: the joy of being able to make something beautiful that touched my soul and share that beauty with others. I’m glad I could share those old beloved hymns that Sunday morning.

Even if you aren’t a religious person, I encourage you to take some time to ask yourself the big questions. What gives you joy in life? When you get to your final days, is there anything you’ll regret not trying? People with disabilities can do anything anybody else can do—we just sometimes have to work a little harder and do things a little differently. In the end, it doesn’t matter if we are the best or the most talented. It matters that we tried. Don’t let fear of failure stop you.

In conclusion, when it comes to my own piano journey. I don’t regret my failures. I don’t regret the wrong notes or the times I’ve crashed and burned during a recital. That was all just part of the learning process. Instead, I would regret never having learned to play.

Rev. Rebecca L. Holland is a visually impaired Filipino-American pastor serving full time in the United Methodist Church. She serves two churches in Central Pennsylvania. Her most recent book, Hope for the Broken: Using Writing to Find God’s Grace, is currently available from Touch Point Faith.

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Underwriting Contributions

Contributions are encouraged to support the accessible formatting of The PCB Advocate in braille, DAISY audio cartridge, large print, and electronic Word file. Donations are tax deductible. Gifts can be made by credit card either online at pcb1.org or by phone to 877-617-7407. Donations by check can be mailed to PCB, PO Box 68, Volant, PA 16156-0068.

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