Braille Monitor

Vol. 63, No. 10                 November 2020

Gary Wunder, Editor

Distributed by email, in inkprint, in Braille, and on USB flash drive, by the

The National Federation of the Blind

Mark Riccobono, President

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        ISSN 0006-8829

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Illustration: Voting Privately and Independently Is for Blind Americans Too

The Complexity of Being Human: A Conversation with Jackie Anderson
by Deborah Kent Stein

Mastering the Skills of Deafblindness
by Danielle Burton

Protecting and Expanding the Right of the Blind to Live in the World: The Report from the Advocacy and Policy Department
by John Paré, Jeff Kaloc, and Stephanie Flynt

Washington Seminar 2021: Our First Virtual Week on the Hill
by Kyle Walls

The Things We Must Dare to Say
by Gary Wunder

A Mother in Wonderland: Securing Services for My Blind Child
by Carla Keirns

The Importance of Expectations
by Steve Jacobson

A Note to Motivate Myself and Clarify My Path
by Maureen Nietfeld

The Diabetes Action Network Is as Important as Life and Death
by Debbie Wunder

Leave a Legacy

Rich and Blind: I'm Here to Tell Ya
by Peggy Chong

Free iOS App Now Available
by Scott White

Braille Bank Statements: What Should We Do to Get Them?
by Curtis Chong

Federationists Continue to Express Our Commitment in Song: "My Vote" ("My Shot" Parody Lyrics)
by Precious Perez


Monitor Miniatures

Copyright 2020 by the National Federation of the Blind

Voting Privately and Independently Is for Blind Americans Too

One of the most cherished rights of being an American citizen is selecting those who will serve in our government. We do this through our vote, and because we are supposed to be able to cast it privately and independently, we can vote for whomever we wish without fear of repercussions. The right to vote privately and independently has long been taken for granted by eligible voters who can see, but extending this right to blind people has been slow in coming. Bringing someone to the polls with us to mark our ballot isn’t voting privately or independently. Being accompanied by a judge from each party isn’t voting privately and independently. A voting machine that offers text to speech represents a tremendous advance for those of us who go to the polls, but in the midst of this pandemic, a goodly number of us consider this to be much too dangerous. We wish to exercise our right to decide through the absentee ballot, but many states are not equipped to provide us with a way to do this privately and independently. The 2020 elections have shown us that there are far too many obstacles that stand between us and true voter equality, so it is clear that we have our work cut out for us long after the last ballot of 2020 has been cast. Are we up to the job? You bet we are. Let those who try to trivialize our right to vote privately and independently beware: when we secure that right, we will remember who helped, who remained silent, and who, through their silence, condoned the system that actively deprives blind people of a right that everyone else takes for granted. 

The Complexity of Being Human:
A Conversation with Jackie Anderson

by Deborah Kent Stein

From the Editor: This article first appeared in Future Reflections, Summer 2020. Here is how the gifted and talented Debbie Stein introduced it:

In the National Federation of the Blind, Jackie Anderson is best known as the teacher who established the first BELL program (Braille Enrichment for Literacy and Learning) in 2008. She holds a master's in the education of blind students and is completing doctoral studies in inclusive education at Kennesaw State University in Georgia. Her company, Let's Connect Resources, provides consultation and training services for parents and teachers of blind children. This article is based on our recent conversation about the complex intersection of blindness and race in the United States.

DEBORAH KENT STEIN: Blind people and black people belong to groups that have to deal with overt discrimination. But there are deep differences between racism and the discrimination that blind people experience. What has it been like for you as a member of both of these groups?

JACKIE ANDERSON: I grew up in Jamaica. Prejudice certainly exists there, but it was a black-dominated culture, and I never experienced racism while I lived there. I was raised with the idea that you should work hard and play hard. If you did what you needed to do, things would work out for you.  

DKS: What do you mean when you say you experienced prejudice but not racism? How are those things different?

JA: Prejudice is an automatic feeling toward a particular group of people based on a characteristic such as race. People in a subordinate group may be prejudiced toward people in a more dominant group and vice versa. It's racism when people in a dominant group exert power over people in other groups. So racism is about power and the ways power is expressed. I didn't really understand that until we discussed it in one of my doctoral courses.

DKS: What was it like for you when you came to live in the United States?

JA: When we moved to the United States my siblings, who are sighted, experienced the effects of racism right away. But when people met me they saw me as a blind person before they saw me as a black person. In a way being blind protected me from some of the things my siblings had to go through.

DKS: What kinds of conversations have you had about race with your children?

JA: I don't think I really talked a lot about race with my kids. Because of my own upbringing in Jamaica I had an expectation that they would relate to people from all backgrounds, and it would be fine. I understand race as being much more than skin color.

DKS: I know that one of your children is blind. Do you find that her experiences around race are different from the experiences of your sighted children?

JA: My daughter Aunya, who is blind, will tell you in a heartbeat that people see her blindness first, before they see anything else, including her race. But race does have an impact on her experience.

Most of the students at Aunya's middle school are white. She is one of only two black students in the school band. When the band went on a performance trip, the two of them automatically were assigned to room together. They weren't friends particularly, so it seemed obvious that they were assigned to room together because of their race. The two of them had never really talked before, and they discovered that their experiences at school were very different. Aunya had friends in every subgroup. She hung out with the boys in the trombone section, where she was one of only two girls. At lunch period it looked like the United Nations at her table, because there were students from every racial background sitting there. The other girl, the girl Aunya was rooming with, only hung out with the black kids at school. I don't know whether Aunya's experience is related to my own lived experience and the way I have raised her, or whether it's mostly because of her blindness.

DKS: How does that compare with the experiences of your sighted children?

JA: My youngest daughter Amya, who is sighted, had a rough time when she transferred to a new school in fifth grade. Some of the kids were really mean, and they called her all sorts of names. I only found out about it later, and I was horrified. I asked her, "Why didn't you tell me about this?" She said she just tried to brush it aside and tell herself it was their problem, not hers. Finally, she made two friends, one white and one who also is of Caribbean descent.

I also have raised three older children, none of them with any visual impairment. All of them are very vocal about their experiences around race. We have had an increasing number of conversations about race over the past few months, and I've become much more conscious of conversations we've had over the years. When my boys started driving I told them to text me when they finished school, and I told them to come straight home. I didn't want them hanging around places after school and coming home late. We lived in the most affluent section of the county. I warned the boys to check their speed and always be sure they weren't driving above the speed limit, in case anyone thought they were in a place where they didn't belong. I talked to them about the protocol, what you do if you get pulled over. I did that automatically, as a matter of course. About a year and a half ago I discovered that my white friends don't have those conversations with their kids.

DKS: Have you had a conversation like that with your sighted daughters?

JA: Amya is only thirteen, so we're not there yet. But with my older daughter, Corinne, I've had a talk somewhat similar to my conversations with the boys. The onus is on them to make sure the person they're talking to is comfortable.

DKS: That choice of words is interesting to me, because as blind people we often talk about how the onus is on us to help sighted people feel comfortable. It's not that we will be in physical danger if people are uncomfortable with us, but our opportunities to get a job or rent an apartment, to make our way in the world, often depend on our ability to make people feel comfortable around us.

JA: Definitely. I totally agree. Karen Anderson posted that same sentiment on Facebook a few weeks ago. She said that making that connection has helped her, as a blind person who is white, relate to what black people are talking about. She can make that connection as a white person who is blind; it's real for her.

DKS: Still, I'm a bit wary of suggesting that people in the blind community are more empathic than others around racial issues. There's a stereotype that says blind people are oblivious to color, so therefore blind people don't have color prejudice and can't be racists.

JA: Oh, that's a great fallacy! Sure, a lot of sighted people make that assumption. It's based on the idea that racism is based on color, but it's not. Actually I think skin color is the least important aspect of racism. We humans are so complex! So many different experiences shape our mindsets. I've had conversations with several blind people around the issue of having to make others feel comfortable, and they get it, that this is something the blind community and the black community both experience. But I've also had conversations with white people who are blind, and they don't get it at all. Their other lived experience of whiteness is more dominant in shaping their perception. And in the same way I've talked to people who are not blind who are having a very hard time wrapping their heads around the whole discussion of race.

The bottom line is the question of which aspects of your lived experience inform who you are. Which is the dominant piece? An individual who is blind may know the experience of having to check the comfort level of the person they're interacting with. But still, that may not be their dominant lived experience. Their level of empathy really may depend on their dominant lived experience.

DKS: When you think about ways for parents to help their kids have a deeper understanding about race and racial issues, are there things it might be helpful for them to discuss?

JA: I think the first thing parents need to do is acknowledge that racism and prejudice exist. When they're young our kids only know what we share with them. If your children only learn about people from your own culture and socioeconomic background, that's all they will know. If the only information they hear about another community is negative, that's what they will absorb. Who are the characters in the literature we present to our kids? Is their diversity in their books and movies? If you take your children to a museum, do you ever go to a museum that exposes them to African American art and culture? We need for everyone to have cross-cultural exposure. You need to be purposeful to find those opportunities, but they do exist. We now have access to so much more than we had a few decades ago. And we still need so much more.
Diversity isn't just about white and black cultures. When we first had the lockdown last March, I told my kids we were going to use the time to do research on some different countries. I said, "Let's not research the countries we hear about all the time, like Mexico or France. Let's study countries we don't hear about much at all." It took some pushing. We have to be intentional about it. So much exists in our world, and if we only keep looking at the same things over and over, there is no growth.

DKS: That means pushing ourselves beyond our comfort zones.

JA: Not long ago a mother I've been working with texted me, and she said, "Jackie, I really want to respond to the discussion of racism and Black Lives Matter. I want it to be meaningful, and I don't want to be offensive." We went back and forth for quite a while, and I explained how my upbringing in Jamaica is different from the experience of so many black people raised in the United States. Finally, my answer to her question was, "Whatever you share is okay, as long as it's authentic to you." We've started the discussion. People are talking, and this is the only way change will occur. What I share may have an impact on how you behave or what you believe, but that can only happen if we start to talk.

Mastering the Skills of Deafblindness

by Danielle Burton

From the Editor: Danielle Burton is a very active member in our Kentucky Affiliate and in our national movement. Her signature line could almost pass for a resumé: She is the secretary of the DeafBlind Division, the second vice president of the DeafBlind Division in Kentucky, and the program manager of the Technology Assistance Division of the affiliate. What she writes here is a variant of something that appeared in the Kentucky Cardinal, the newsletter of the National Federation of the Blind of Kentucky. Here is what she says:

Many of us who have been in and around the National Federation of the Blind for a while know that one of the unique things about the Federation is its belief in having to master the alternative techniques of blindness. These blindness skills such as independent living, cane travel, assistive technology, and Braille that are taught in our three training centers are important skills needed in order to be a successful blind person. However, sometimes blindness skills alone are not enough to be able to compete on equal terms with the larger society.

I was born deafblind. I currently have no vision and have a mild to moderate hearing loss which causes my hearing to vary from day to day. Back in 2011 when I joined the NFB, I did not consider myself as deafblind. I knew my hearing wasn't normal since I've been fitted with two hearing aids my entire life. I simply kept trying to pass as a hearing blind person while struggling over and over to cross streets and use sound for orientation while traveling. Trying to follow people in a group by hearing alone is equally ineffective. With traveling becoming more and more exhausting, I began to realize that relying on blindness skills alone wasn't working—particularly in the area of communicating with hearing people, sighted or blind, where there is background noise.

After many months of thinking about and evaluating my situation, I came to the decision to learn Tactile American Sign Language or ASL. I attended the Helen Keller National Center, located in Sands Point, New York, to begin the process of learning ASL. After eight months there, I learned the basics of ASL, its grammar, structure, and deaf culture. I spent time learning from other deafblind individuals and practicing with native signers in my spare time as a student at Helen Keller National Center. Upon returning home to Kentucky, I had attained basic ASL communication.

Many people might think that this basic knowledge would be plenty. However, growing up in the Federation has taught me otherwise. I am now attending Eastern Kentucky University, majoring in deaf studies and am currently enrolled in ASL 101.

The ASL courses offered here are total immersion classrooms. They are similar to how we teach blindness skills to blind students at our training centers. In this case you are learning how to communicate without using your hearing. In the classroom you use ASL and written communication with your classmates and your professor.

I have found immersion to be an excellent way to master the skills of deafblindness, while signing in the areas designated as sign-specific spaces. I do not use my vision or my hearing, which allows me to really focus on being able to communicate as a deafblind person only. I have found immersion to be challenging and rewarding. I am slowly beginning to experience the ease of communication that tactile sign language provides. I can chat with friends at gatherings in the dining hall and other areas with background noise with a new level of ease. I don't have to struggle to understand what is being said or sit on the sidelines of the group, not knowing what the conversation is about. Since many of my new friends on campus can sign to some degree, I have been able to interact with them in a way that allows us all to enjoy doing what every college student does while not doing homework—having fun with friends.

ASL will also play an important part in my role as a student, future teacher, and as an active member of the National Federation of the Blind. By having interpreters to interpret for me in multiple settings, I can now have full access in the classroom to presentations and meetings like never before. While still in transition between the worlds of ASL and hearing, I will continue to work toward of goal of ASL. Because I believe in the Federation philosophy, I will master this skill.

Protecting and Expanding the Right of the Blind to Live in the World: The Report from the Advocacy and Policy Department

by John Paré, Jeff Kaloc, and Stephanie Flynt

From the Editor: Because of time constraints, we were not able to listen to the report of our advocacy and policy team during our 2020 National Convention. What follows is a report from the fine folks who make up our advocacy and policy group. John Paré begins the presentation after this introduction by President Riccobono:

Our advocacy and policy team works on a daily basis to amplify and coordinate the advocacy activities of our affiliates across the country. They help us stay plugged in, connected to all the right places, and make sure that we synthesize the tremendous resources that we have to get the agenda of blind Americans accomplished in the Congress as well as helping with local legislators here. To kick off our advocacy report is a gentleman who brings as much heart and determination as anybody in the National Federation of the Blind to our work. He makes sure that our name is as well-known as any other and certainly better known than most in Washington, DC, and beyond. Here is the executive director for advocacy and policy, John Paré:

JOHN PARÉ: Thank you, President Riccobono, and good afternoon Federation family. The National Federation of the Blind is composed of members who are imaginative, supportive, and determined. When we formed our organization eighty years ago, we found that the broader community dismissed us as irrelevant. They believed the blind were not capable of speaking for ourselves, but this did not stop us. In the 1990s, we challenged the federal government when it said that we could not have federal jobs, and we beat them. In the 1970s, we won the right of blind employees in sheltered workshops to organize and bargain with management about wages and working conditions. In the 1990s, when leaders of the United States House of Representatives tried to merge vocational rehabilitation services with human services programs, we just said “no” and beat them on the House floor. These three victories are just a few examples of the power of the organized blind movement. Our 2020 Washington Seminar was no exception. Representative Bobby Scott, chairman of the powerful committee on education and labor, spoke at our Great Gathering-In. We had fifteen members of Congress speak at our Congressional Reception, and we picked up forty-six cosponsors across our legislation. We were steadily working on our legislative agenda, making the voice of the organized blind movement heard on Capitol Hill and in our local communities. Then on March 11, the World Health Organization declared COVID-19 a pandemic. As the threat of COVID-19 took hold, President Riccobono took decisive action. On March 13, he postponed all in-person Federation meetings, and on March 23, the Jernigan Institute was closed. But the National Federation of the Blind is composed of members who are supportive, imaginative, and determined. We found ways to continue the work of the Federation. Our programs were adapted, our advocacy efforts intensified, and our commitment to our Federation family deepened. Chapter meetings were moved to Zoom calls, the BELL Academy was changed to the in-home edition, and our national convention is still occurring. Most importantly, our members continue to communicate with each other to discuss ways of persevering through the COVID-19 pandemic.

When the CARES [Coronavirus Aid, Relief, and Economic Security] Act was passed, our members began an intensive effort to educate each other on the Economic Impact Payments, expanded unemployment insurance, and the effects these programs might have on Social Security Disability Insurance [SSDI] and Supplemental Security Income [SSI]. Through it all, we continue to educate our elected leaders on legislation that would, when passed, improve the lives of blind Americans. We explained the Access Technology Affordability Act was needed more than ever to help blind students who are now learning from home, how it would help blind people look for and apply for jobs, and how it would help us maintain our self-sufficiency in this time of mandatory social distancing. Our cosponsor count grew rapidly, and we are now up to 112 cosponsors in the House and twenty-three in the Senate. We also asked Congress to eliminate the five-month waiting period for eligible SSDI recipients and the corresponding twenty-four-month waiting period for Medicare benefits. Eliminating these waiting periods permanently is a good idea; eliminating them during the COVID-19 pandemic is even more crucial. On July 24 Representative Jan Schakowsky of Illinois introduced the Greater Access and Independence through Nonvisual Access Technology Act (HR 3929). We are working to secure a Senate champion. This bill establishes a minimum nonvisual access standard for home use medical devices, home appliances, and fitness equipment. It currently has twenty-eight cosponsors in the house. On December 5, 2019, Representatives Roe and Courtney introduced the Accessible Instructional Material in Higher Education Act, and on December 18, Senator Warren introduced companion legislation in the Senate. The House bill currently has forty-three cosponsors, and the Senate bill has eight. We hope to either pass this legislation as a standalone bill or as a component of higher education reauthorization.

We continue to advocate for the passage of the Transformation to Competitive Employment Act. As I mentioned, Chairman Bobby Scott spoke at our Great Gathering-In and said that subminimum wages are outdated and discriminatory. Furthermore, he said “Ending section 14(c) of the Fair Labor Standards Act is a critical civil rights issue that deserves our nation’s attention.” We could not agree more. The House bill has sixty cosponsors, and the Senate bill has seven.
Now, let’s take a minute to talk about NFB-NEWSLINE®. At the beginning of the pandemic, when information about COVID-19 was more difficult to obtain, we added a special “Search” feature to NFB-NEWSLINE to help subscribers find COVID-19 breaking news. We also added COVID-19 statistics from Johns Hopkins University, and in order to make sure that all blind Americans had access to this information, President Riccobono temporarily extended the NFB-NEWSLINE service to all non-sponsored states. The National Federation of the Blind has also contracted with Deloitte Consulting to analyze NFB-NEWSLINE, the news industry, and trends in media consumption. We will be using this information to determine what enhancements are made to the service. Thank you to everyone who participated in our survey.

We have recently integrated the core elements of the KNFB Reader into the NFB-NEWSLINE Mobile App. We are currently having some problems with that. We hope to rectify these problems and reissue the beta and the actual production app in the next few weeks. So, stay tuned for that.

NFB-NEWSLINE serves more than 123,000 subscribers, and it has over five-hundred publications. On average, we receive 5,226 calls every day. And some portion of NFB-NEWSLINE is accessed every 1.8 seconds. The weather portion of the service includes detailed seven-day forecasts, emergency alerts, and other useful information such as air quality and heat index. The TV listings include programming for every broadcast and cable provider, channel mappings for your specific cable or satellite provider, and information on audio description. The job listings include every job listed on CareerBuilder and USA Jobs. Don’t forget that you can now also access NFB-NEWSLINE on any of the Amazon family of products.

When I think of imagination, support, and determination, I think of the members of the National Federation of the Blind. It is our imagination that has helped us create opportunities and find solutions when none were apparent. In our support of each other, we have built a community that is there for us in good times and bad. It is our determination that drives us every day in our relentless pursuit of equality. Our bonds of friendship have made a lasting impact on the history of the Federation.

As the American playwright, Tennessee Williams once said, “Life is partly what we make it and partly what is made by the friends we choose.” I am honored to count all of you as my friends. I am strengthened by our commitment to each other during this pandemic. I am proud of what we have accomplished together. And I look forward to working with all of you as we build our future and live the lives we want. Let’s build the National Federation of the Blind.

Alright, fellow Federationists, we’re gonna move to the two specialists that helped so much in coordinating all of our work on Capitol Hill. It’s really our teamwork, our fifty thousand plus members, your advocacy happening in the Capitol and in the local districts—coordinated with the work we do in Baltimore and in talking in detail to staff members on the Hill—that makes us the success we are. Our first specialist is going to be Jeff Kaloc. He’s the newest member of our staff. He used to work as a staff member on Capitol Hill, so he’s been on the other side of the table as we talk to people. Please welcome Jeff Kaloc.

JEFF KALOC: Thank you, fellow Federationists. This is my first time addressing you, and it is wonderful to have this opportunity and to work on behalf of the National Federation of the Blind. I feel passionate about the issues I’ll bring to you today, and it is your passion that will bring them to fruition. So, let me get started on my list.

The Access Technology Affordability Act will provide a refundable tax credit for blind people purchasing specific assistive technology. You know about the specifics of the act from our fact sheets and the write-up in the Braille Monitor, so let me start with what you may not know. We are doing well, but your support is critical because we don’t want to lose out on the skills of any blind person, for it is a tragedy when anyone’s potential and productivity go to waste. Right now we’re gaining momentum with this bill. We have 128 cosponsors in the House and twenty-six in the Senate. Out of those 128 in the House, seventy-nine are Democrats and forty-nine are Republicans. But announcing party affiliation doesn’t fully express the diversity of the support we have attracted. We have members who are progressive as well as those who belong to the Freedom Caucus. This speaks volumes in demonstrating that this is a solution to a problem that does not have partisan distinction. This is something that every American can support and should support. Right now we have so much momentum that this legislation has the interest and the support of both Chairman Neal and Chairman Grassley. In addition to that, the bill was recognized at the House Subcommittee on Select Revenue Measures by Chairman Mike Thompson. During that hearing, the members were discussing COVID-19 and how it affects families and workers during these harsh economic times. Chairman Thompson mentioned this bill not only during that hearing but in his opening statements, which just goes to show the importance of this bill and how not only will it impact the economy but also how it helps workers during these tough times caused by the pandemic.

In order to push this bill further, though, we need your support. We need you to contact your members of Congress. We need you to call them, we need you to email them, or even schedule a conference call using Zoom to express the importance of this bill. Tell them not only how it would affect your life in normal times but stress the unique nature of this pandemic. We know that right now many people are working remotely and that students are learning remotely. It’s critical that this technology is at their disposal so that they can continue to be productive.

As John mentioned previously, this is a group effort. We can’t do this on our own. We need you to contact your representatives and your senators and urge them to cosponsor this important piece of legislation.

Another piece of legislation that I want to mention addresses a group that has been hard hit during these harsh economic times. I’m talking of course about our members who work in the Randolph-Sheppard (RS) program. Randolph-Sheppard vendors are small business owners, as many of you know. They operate in government facilities. These could be federal or state facilities. The locations our RS merchants manage are critical because they aid workers in gaining supplies that they need at almost no inconvenience to them. But due to the closure of these facilities, many of these entrepreneurs have not been able to go to work because they cannot access the building they work in. This has created a harsh economic downturn for their businesses, and they need our help today. Even when federal facilities open up, they are not going to have the same number of workers. Over time these facilities may end up serving the number of customers they had before the pandemic, but that time is not yet, and this is why it is critical that we receive federal aid to help these entrepreneurs and get them through this pandemic.

We have been successful in the House of Representatives in gaining an appropriation of twenty million dollars to help Randolph-Sheppard vendors. But more still needs to be done. We still need to work on the Senate side in order to make sure this bill passes, and then we must coordinate with the White House to see that it is in favor of this legislation. All three must work together so that Randolph-Sheppard vendors can prosper during these times. This is where you come in as well. We need your support right now. As we’re reaching out to the Senate, we need you to reach out to your state’s Senators, and let them know that Randolph-Sheppard vendors can’t wait on this funding. Remind them that these businesses are different from others because they reside in federal and state buildings to which they have no access. Due to no fault of theirs, the food they have purchased will spoil and will need to be paid for and replaced.

Lastly, I want to speak with you about voting rights. None of the things I mentioned would be possible without our right as American citizens to vote. This is an election year, and it is crucial that we do what we can to see that voting is accessible, private, and independent. No one should have to choose between their safety during this pandemic and their fundamental right to vote. Title II of the ADA states that Americans with disabilities have the same opportunity to vote as Americans without disabilities. That being said, the blind should have the same access to vote as anyone else, and that should include the right to vote both privately and independently.

Unfortunately, too many states do not have the accessibility, privacy, or independence that blind Americans deserve in order to cast their ballots. Because of this frustrating process, we must contact our federal, local, and state representatives, and let them know how important voting privately, independently, and accessibly is to us.

With this as my plea to you, I want to give the podium back to John so he may introduce our next speaker.

JOHN: Thank you, Jeff. Alright, the Federation team is alive and strong. And we’re working together to move our legislation forward. I’m so excited. Thank you, Jeff for speaking about the Access Technology Affordability Act, the RS program, and the critical importance of voting. I appreciated the comments that Speaker Pelosi made the other day in her conversation with President Riccobono. That was terrific. Alright, now moving to Stephanie Flynt. We appreciate the NFB of Mississippi helping to encourage our latest staff member. So let’s hear from Stephanie Flynt.

STEPHANIE FLYNT: Thank you, John for that wonderful introduction. And Federation family, it is a privilege to be able to address you in this capacity. I know that I don’t just speak for myself when I say that our virtual energy over this week has been very palpable and just absolutely amazing. And that has been, in part, because of Federationists like you.

Winston Churchill is often credited with the quotation: History will be kind to me, for I intend to write it. That isn’t actually what he said, but for the sake of brevity, it probably is what he should have said. Instead, he said, “For my part, I consider that it will be found much better by all parties to leave the past to history, especially as I propose to write that history." But for my presentation today, let’s use the shorter quotation and just attribute it to me.

Since 1940 we have written and continue to write our history in a way that is kind and favorable to our movement. On July 24, 2019, twelve days after last year’s convention, Congresswoman Jan Schakowsky of Illinois introduced H.R. 3929, the Greater Access and Independence through Nonvisual Access Technology Act or GAIN Act for short. This piece of legislation will authorize the access board to conduct a study of pre-existing nonvisual access standards as well as recommend and establish a nonvisual access standard for household appliances, fitness equipment, and home use medical devices. Not only does this legislation have the power to enrich the quality of life for all blind people, but it’s also, dare I say, gaining momentum in the 116th Congress. I’m pleased to report that the GAIN Act is now also up to twenty-nine cosponsors in the House of Representatives. History will be kind to us, for we intend to write it in favor of equality and opportunity for the nation’s blind.

And speaking of equality and opportunity, after much deliberation and negotiation with the higher education lobby, H.R. 5312, the Accessible Instructional Materials in Higher Education Act (what we call the AIM HIGH Act) was reintroduced on December 5 of last year by Congressman Phil Roe of Tennessee and Congressman Joe Courtney of Connecticut. Two weeks later, companion legislation—S3095—was reintroduced by Senator Elizabeth Warren, along with Senators Michael Bennet, Joni Ernst, Jon Tester, and Dan Sullivan. Both the House and Senate bills were reintroduced without safe harbors for institutions of higher education. In addition, the primary tenets of AIM HIGH were incorporated into the House’s Higher Education Reauthorization Package. There is no doubt in my mind that, as a result of our movement’s relentless advocacy, lawmakers are beginning to understand the critical importance of equal access and that equal access is the key to leveling the playing field between disabled and nondisabled students. Equal access is the key to expanding the circle of participation and revolutionizing the 21st century college classroom so that our blind students can compete on terms of equality and have the same opportunities as their sighted peers. We know now that, more than ever, equal access to instructional materials is paramount to a collegiate’s success in not just their virtual learning environments but also in their face-to-face classrooms. History will be kind to us for we intend to write it in such a way that not even a global pandemic such as COVID-19 will be considered an excuse to undermine the rights of blind Americans.

If there is one thing that I’ve had the privilege to witness as someone working on the government affairs team at our national office, it is that my Federation family always answers the call of our movement. On March 19 of this year, I received word from multiple sources on Capitol Hill and other disability groups that the Senate had proposed legislative language that would allow states to request or obtain waivers for all services covered under the Individuals with Disabilities Education Act or IDEA. I remember thinking to myself, “surely there is no way this is going to actually happen.” But then I saw the language, and my heart sank. I feverishly and fiercely typed out a call to action alert, letting my Federation family know what had happened and that it was vital to reach out to Congress in order to keep this waiver authority out of the CARES Package. Let me just say that, while I’m sure you are tired of seeing this same phrase over and over again in every single legislative alert that we send out, your calls and emails to your senators and representatives really do make a significant difference. It’s because of those calls and emails from Federationists like you across the country that the waiver authority I mentioned was weakened into a requirement that the secretary had to report on any waiver recommendations thirty days after the enactment of the CARES package. Shortly after its passage, President Riccobono wasted no time in writing a letter to Secretary DeVos explaining that no IDEA waivers were necessary for students, and none should be recommended to Congress. And spoiler alert: Secretary DeVos only recommended one waiver under IDEA, which extended IFSP [Individualized Family Service Plan] services for our blind toddlers past their third birthday until a safe determination of IEP services could take place.

As John mentioned earlier, our advocacy and policy team has expanded our advocacy efforts to new dimensions in response to COVID-19. We are working to eliminate Social Security Disability waiting periods, which would allow those who have lost their jobs due to this international crisis promptly to begin receiving cash and insurance benefits. What is more, we are requesting an appropriation which will establish a peer support training centers’ grant program, allocating ten million dollars to Structured Discovery centers like the Louisiana Center for the Blind, the Colorado Center for the Blind, and BLIND, Incorporated so that these vital contributors to the success of blind people may continue offering their services during and after this one-of-a-kind national emergency.

I get asked a lot, “But how are we able to do this?” If I may go ahead and paraphrase Hamilton the musical to describe my Federation family, we can do it because my Federation family does not throw away our shot. Instead, my Federation family rises up to any challenges that come our way, and we are able to take our advocacy to new heights and give it all we’ve got. This is not because of me and our advocacy and policy team but because of President Riccobono’s steadfast leadership and his unwavering commitment to the nation’s blind. History will continue to be kind to us because with love, hope, and determination, we will write it in such a way that our legislative dreams are transformed into laws that become our reality. My Federation family, I invite you to join me in continuing to build the Federation with advocacy at the forefront of our efforts. Thank you.

JOHN: Thank you, Stephanie. The depth and breadth of our advocacy, the advocacy of the National Federation of the Blind, knows no bounds; we are, as you can see, working together. We are making substantial progress on what is really our seven bills that President Riccobono mentioned earlier in this convention, along with all of the specialized work that we’ve been doing that Stephanie mentioned related to COVID-19. We’ve also had a great lineup of members of Congress speak at this national convention, beginning with the somewhat surprise presentation with Congresswoman Jan Schakowsky, the sponsor of the GAIN Act, followed by the Speaker of the House, Nancy Pelosi, followed by Senator Durbin, and now, we are going to view a presentation with Senator Boozman. Senator Boozman has been doing an incredible job as the sponsor of the Access Technology Affordability Act. President Riccobono spoke to him earlier this week and had a terrific conversation. Here it is:

PRESIDENT RICCOBONO: It’s my pleasure to be here today with the senior senator from the great state of Arkansas, a great friend of the National Federation of the Blind. He was first elected to Congress in 2010. Among other things, he serves as the chairman of the Appropriations Subcommittee on Military Construction, Veterans Affairs, and Related Agencies.  I think I first got to know him in the 115th Congress when he came to our congressional reception and amongst other remarks announced that he wanted to be the lead sponsor in the United States Senate of our Access Technology Affordability Act. It is a very important bill that has been advancing, and we really appreciate having the senator's leadership on this and other important initiatives we both support. It’s a pleasure today to introduce Senator Boozman. Senator, thank you for being with us.
SENATOR BOOZMAN: Well, thanks so much. And special thanks to the National Federation of the Blind for inviting me to speak at your convention. As an optometrist, I have seen firsthand many of the struggles your members have to deal with on a daily basis. In fact, I can remember my brother calling me when I was at the University of Arkansas as an undergraduate. My brother had decided he was going to become an ophthalmologist. He was in a medical school residency and decided ophthalmology was going to be what he wanted to devote his life to, so he called me and said, “John, I’m going to get into ophthalmology. Why don’t you think about being an optometrist, and then we can work together?” So I thought about that, and my brother and I were very close. He was four years older than I, and so I did that. I got into my training, and when I was a senior, I realized that I was going to have to work with people who had impaired vision. I asked the dean of my school if I could go to the New York Lighthouse for the Blind, which was truly the best place in the country at that time for low-vision training, so I spent a semester there. I studied under Eleanor Faye, the great ophthalmologist who was such a pioneer in that area, and this was so very helpful.

I came back to Arkansas and visited with the school for the blind in Little Rock. We set up a low-vision program. And you have to remember, this was back in the old days when really there were just some inexpensive, but fairly powerful magnifiers. I worked with this young student and got him where he was able to read print. The school followed up and did an excellent job. Literally he was reading newspapers. He goes home on break and he’s reading the newspapers, and his mom says, “What’s the deal? What are you doing? How can you do this?” So she called the person who was taking care of him. That doctor subsequently called the person at the school for the blind, chewed him out, and said, "Do you know what you are you doing?” And, so, I really do understand where we’ve been, where we are now, and what we need to do to push us in the future. That's why I introduced the bipartisan legislation to help blind Americans have access to the tools that they need to get in the workforce, in this case, with COVID-19, get back to work and excel in the classroom. The Access Technology Affordability Act establishes a $2,000 refundable tax credit for blind Americans to be used over a three-year-period to offset the cost of access technology. Many blind Americans have lost their jobs to the COVID-19 pandemic, so this is an excellent time to double down on their efforts. A refreshable Braille display will be a huge asset to search for a new position. Blind students of all ages are now learning online at home, so a Braille embosser is an essential tool to keep up with their schoolwork. Many states are enforcing stay-at-home orders. Screen reader software can help keep blind citizens informed of which restaurants and businesses are open and safe for them to visit. The legislation also, very importantly, provides flexibility for individuals to obtain access technology based upon their specific needs. And, as we all know, certainly a person who is categorized as blind—it's not a one-size-fits-all. There’s all levels of vision; there’s all levels of feel. So all of you know better than anyone else—accessibility requires an individual assessment of one’s own skills and needs. This can be especially valuable for blind Americans to ensure that they are receiving the tools that are most useful to them.

The unemployment or underemployment rate among blind Americans was likely exacerbated by the COVID-19 pandemic, but it has existed, as we all know, for many years. According to the 2017 American Community Survey from the US Census Bureau, nearly 70 percent of blind, working-age Americans did not have full-time, full-year employment. The bill will help these Americans enter the labor force by shouldering a small portion of the cost for access technology.
And the only other thing I’d say is that the technology we have now and the affordability is something that in the old days we simply couldn’t imagine. There are so many devices that can help make one’s life so much easier. So that’s really what it’s all about is working together, and I appreciate the efforts of your team in Washington. Fred Graefe does a great job, and you all are doing a great job with explaining to members how important this is and educating Congress as to how helpful having accessibility through a tax credit program is. So thank you very much, and I’ll be glad to visit and discuss anything you’d like. We’re willing to help you in any way that we can.

PR: Thank you very much Senator. It’s great that you keep your leadership and perspective rooted in the real hopes and dreams and needs of blind people, bringing your personal experience to that, so we really appreciate that. I guess you know that we've registered more than seven thousand individuals to be at this online convention. Many more will be streaming who haven't registered.

SB: That's great.

PR: What would you want to say to those blind people who are out there? Some of them are going to be learning about this bill for the first time, and they’re probably saying, “Yeah, man, I need that.” What would you say to them in terms of what they can do to help you and our efforts to move this bill in the United States Senate?

SB: Well, as you know, I can help educate members and twist arms and do all that we’re doing right now, but there is absolutely no substitute for your members or affiliates, for those people reaching out to their congressman, their senator, or you know, not necessarily directly, reaching out to their staff and just talking about how important this is. I think the thing that makes the most difference is relaying how this proposal would make a difference in their life, how it would make their life easier. Again, we helped start the low-vision clinic in Little Rock, spent many years there, and Dr. King took that over and is doing a tremendous job. But I know firsthand that some people don’t understand how to categorize blind people: it’s all one vision, it’s all one field of vision, all of those things. And so we have to educate them as to how a reader would be so helpful or a magnifying device that may take many different forms. In the case of Braille, you know, we must tell them about the various things we can do in that regard or a combination of all of those things—hard copy, refreshable Braille. But I think the best thing is personal contacts. You know, I get all kinds of contacts. Sometimes they’re from letters and this and that, but there is no substitute for an individual taking the time to contact by email or phone call or in-person, and it can either be staff or members.

PR: Great. I’ll throw one more thing at you: so people should definitely Support S. 815, which is the bill we’ve been talking about. One of the things I love about this and the work that we do in the National Federation of the Blind is that it is bipartisan, has support from all angles. One of the things that we’ve been doing at this convention is, of course, encouraging blind people to register and go out to vote this year, regardless of their political views. We've been working hard over the last few months to put extra energy to make sure that blind people can vote in an accessible manner in states as the voting landscape shifts. I just wonder, in terms of participation in the voting process in the United States, do you have any messages for our members?

SB: No, just except as you said: I would encourage them to go and vote. You know, the good things about these issues are that they aren’t partisan in nature at all. These are things that we simply need to get done and the idea that helping an individual who is handicapped in some way, this way through visual impairment, that’s something that we really do to coalesce. We've got good sponsors on both sides; that’s really important as you get things done. We appreciate your leadership in that regard, the leadership of your association, your leadership in Washington that’s doing a good job; that’s pushing things forward.

And then, as you said, we’re getting ready to celebrate the Fourth of July, where we celebrate the founding of our country and the freedoms we enjoy. Certainly right at the top of that list is our ability to go and vote, so we shouldn’t take that for granted.

PR: Well, thank you, Senator. We appreciate your leadership on behalf of the National Federation of the Blind of Arkansas, who I know really supports what you’re doing and your listening to their voice locally and also our national movement. We really appreciate your leadership on this bill and others, and we look forward to our continued work with you in the Congress.

SB: Well, we appreciate you and appreciate the great work that your organization is doing. It’s how you get things done—through banding together. So, we’re gonna do our best to continue the work to push this through, and I look forward, hopefully in the not-too-distant future, that we’re together again in person. We're going to get through this virus. I would remind all who are participating really to take precautions, wear the mask, and do the things like social distancing. It's all about protecting yourself. But as important or maybe even more important, it’s about protecting others. So many people have underlying conditions, and we don’t want to get these people in difficult situations. So, again, thank you so much for having me, and I certainly enjoyed our time together.

Washington Seminar 2021: Our First Virtual Week on the Hill

by Kyle Walls

The Washington Seminar and Great Gathering-In are both decades old traditions of the National Federation of the Blind. These events are the first major dates on our legislative calendar at the beginning of each year. For the government affairs group at the Jernigan Institute, the Washington Seminar is the most important time of the year after convention, and we know many members feel the same way. We know you get immense enjoyment from being surrounded by five hundred of your closest friends and advocating for issues important to the lives of all blind Americans. We know there is a unique thrill in talking to your members of Congress about legislative priorities that will improve educational, employment, and transportation opportunities for millions of blind people. We know that there is absolutely nothing else like it.

That is why we are excited to announce that, even in the face of a pandemic, Washington Seminar 2021 will take place virtually from Monday, February 8, through Thursday, February 11! That’s right, our work must go on because the barriers faced by blind Americans all across the country have only increased during this pandemic, and we cannot afford to just sit on the sidelines. Of course, the safety of our Federation family is paramount, which is why we will be conducting all large group gatherings, trainings, and congressional meetings virtually.

Many logistical details for the Virtual Washington Seminar are still being worked out, but we will update your affiliate presidents frequently. Please be sure to check with them periodically with questions. What we know for certain at this moment is as follows:

Date: February 8–11, 2021
Great Gathering-In: Monday, February 8, from 5:00–7:00 p.m. EST

A series of trainings will take place throughout January to partially replace some of the legislative priorities training that typically happens on the Monday of Washington Seminar.

Affiliates will still be responsible for scheduling their congressional meetings, but instead of keeping track of a building and room number, you will have a virtual meeting ID number. Most affiliates already have a Zoom license, and we anticipate that only a few affiliates will need more than that one license to handle the number of meetings. We strongly encourage all affiliates to spread out meetings across all three days (Tuesday, February 9–Thursday, February 11) in order to prevent any double-booking of the license.

These are the most important details we have so far. As mentioned previously, we will be in frequent contact with affiliate presidents, so you should check in periodically with them if you have specific questions. As we did with this year’s virtual convention, we hope to make the 2021 Virtual Washington Seminar our largest and most productive ever, and we hope you’re there for every historic moment of it.

The Things We Must Dare to Say

by Gary Wunder

Normally when I write or edit an article for you to read, my hope is that you will come away encouraged, uplifted, and grateful that you took the time with it. In this article that won't be quite so easy. We're going to talk about some difficult things that continue to get in the way of success for our blind children and future blind adults, and it won't all be wrapped up with a tidy bow and a card that says "We know what to do to fix this, and we’re well on our way to doing it.”
I am sixty-five years old, so I started school in 1960 and graduated in 1973. At that time there was a discussion involving the teaching community and the parents of blind children about whether people should go to the school for the blind or the public school. In Kansas City where I lived, there were several schools that had what were called resource rooms. In these resource rooms, we who were blind spent most of our time there in first and second grade, learning our Braille, learning to put numbers in columns for addition, subtraction, multiplication, and learning that strange format that one used for long division. We learned the difference between Nemeth Code and the literary code. Never once did we hear the message that Braille was confusing.

There were different grades or levels of it, and they were all a part of learning, which of course we would do. We were learning dots that made shapes that made letters that made words, and people in adjacent classrooms were learning to look at lead and ink that would make shapes and letters and words. We learned that we were fortunate because almost two hundred years ago a man named Louis Braille came along and figured out how we could do with our fingers what other people did with their eyes.

In our resource room, we learned physical fitness from a teacher who understood that what she wanted us to do would have to be conveyed by word and sometimes by physically showing us what to do. We learned that we could run as fast as we wanted as long as our hand was on a rope, and later we learned that we could run inside the gymnasium if we paid attention to what we learned through echolocation.

Since the school I attended was not in my neighborhood, I spent forty-five minutes to an hour each way on the bus. But this was not considered a problem; it was considered a blessing. How amazing that the school system in Kansas City cared enough to try to educate its blind students rather than forcing them to travel across the state of Missouri to St. Louis.

In some ways the resource room I attended was like the old schoolhouse featured in so many westerns. There were young first-graders like me, but there were also people who were in the second through the sixth grade. So as I worked, I got to watch them work. Some of them were slow, intellectual disabilities severely restricting what they could do. But others were fast, and it was hard not to be distracted by the interesting stories they were reading to our teacher. Tom Sawyer was a lot more exciting than Dick, Jane, Puff, Spot, and the pony who stole an apple from mother’s purse. These fast-reading children gave me reason to believe that this Braille I was being taught could let me work as quickly and efficiently as I heard my mother and father work when they were reading and writing.

Braille was never considered inferior. It was our path to learning, and what could be more valuable than that? Several times each day I would read aloud to the teacher, and she would correct any errors that occurred in my recitation. If I got stuck on a word, or more correctly I should say when I got stuck on a word, she helped me through it. Even when she moved on to other students, if she noticed my fingers weren't moving or I seemed to be distracted and directing my attention elsewhere, she paid me a brief visit. "What appears to be the problem?" she would say.

"I don't know this word."

"Show me the word. I see. Spell it out for me."

“It is a hard one. It seems to start with a G, then there is the AR sign, and then I think this is a Y.”

“You have those letters right, so what does that spell?”

“It is Gary,” was my uncertain and sheepish answer.

“Of course it is, so keep going.”

So I was moving again, reading and understanding the story until once again I came to that G, the AR sign, and that lonely Y. No other word should have been simpler, but none was harder. When she had me read aloud, I would hesitate when I came to that word, and I’d hear her whispering under her breath, “Gary, Gary, Gary.” Then I would pretend I had gotten it and say, “Gary.” She masked her relief and frustration with what sounded like excitement.

The more I learned about the basics of blindness, the less time I spent in the resource room. At some point it stopped being my school day home and started being the place I kept books for other classes. It became the place that I would breeze in and out of to drop off geography and grab up my history. Often it is where I picked up something that had been transcribed for me by the resource teacher that I would use in the classes I took with people who had sight.
The point in writing this is not to take you back to some memory of the good old days or to suggest that there weren't problems in my school curriculum, but as I look at what blind children are getting today, I almost feel like I haven't a complaint in the world.

Contrast what I have experienced with what I hear from so many parents of blind children today. Few of them start with getting Braille immediately on entering the first grade. Usually there is a fight because a child can see a bit. The adage that in first, second, and third grade you learn to read, and in every grade thereafter, you read to learn gets turned on its head. We spend our time in endless evaluations trying to determine whether a child should read Braille, print, or both.

What usually happens is that the district decides early on that if the child can read some print, that is the way he or she should learn. When the print gets smaller, the lines get closer together, and the reading load increases, suddenly it is clear that print isn’t working. Now the district and the parents start thinking about Braille, but where to work it in? The time set aside for learning to read has already gone by. Now Braille has to come at the expense of some other subject or subjects. Maybe we pull Jimmy out of class fifteen minutes early. Why not history? When he gets a bad grade, we really didn’t mean for him to miss that pop quiz or the warning that there would be one or the study material students were told to pay particular attention to in the waning moments of the class. What is to blame for Jimmy’s poor score? Why, of course, it is Braille.
Even for children who are totally blind, Braille instruction is not guaranteed, and sometimes it simply can't be provided. Far too often small schools can't find Braille teachers. Sometimes when they do, the blind student gets so little of the teacher's time that learning to read and write is not a basic part of their initial education but is treated like any other course and gets only a small segment of the day. In far too many cases, our children live in school districts visited once a month by a teacher who knows Braille. Again, I think of myself stuck on the word Gary, and I wonder what my reading speed would be if someone had told me that I would have to wait for three weeks until my Braille teacher could come back and help me.

What happens to our blind student if she does not learn to read and write competitively? She learns to sit in her classroom and be a spectator. She picks up what she can by her ears, but every year she comes to see just how much information is gotten from a worksheet, a book, or weekly reader. She learns to be a spectator in her own life, and sometime around eighteen we transition her to a rehabilitation program. If that program has a good attitude, it tells her she can become anything she wants, that the sky is the limit, that her blindness, with proper training and opportunity, can be reduced to the level of a nuisance and an inconvenience. Regardless how good the program, how likely is it that she will get these skills and become proficient in them? How realistic is it to believe that with all of our one-week, two-week, and eight-week programs that we can turn this around? Nine months of rehabilitation training can work miracles for some people, but we need to work on seeing that those who have our blind children nine months a year for twelve years do a far better job of teaching them how to learn.

In Missouri and in many other states, what happens in the public schools is mostly determined locally. Of course there is some state and local funding, and with that funding comes a few standards. But money promised by the federal government to supplement the cost of special education has never been what was promised. Interestingly the government has acknowledged its unhappiness with rehabilitation outcomes by increasing funding for transition services, but most of this money starts long after one is supposed to be able to efficiently read and write. For the rehabilitation system to get involved earlier seems like a good idea, but my fear is that for most students it is still getting involved far too late.

With too few teachers, too few instructional materials, and too few role models, our children face an excruciating battle to learn what should have been a part of their knowledge and understanding long before. We offer college and other postsecondary training and are surprised when so many students don’t complete their course of study. Occasionally post-secondary education is where blind people start to develop their own techniques for learning and start down the long path to catching up. Is it any surprise that some very bright people finish their college education with a lesser grade point average than they would've had if only they could concentrate on the material being taught and not wrestle with knowledge assumed to have been acquired, skills that are likewise presumed, and technology built without them in mind?

In this article and this issue you won't find any easy solutions that can be implemented by writing a few letters or visiting a few members of Congress. We have to stand back and take a hard look at what we are getting for blind children and make a valiant effort to go beyond defining the problem. As it always has, a big part of the solution must come from us, first in the form of an idea, then in the form of a commitment, and then through the follow-up and dogged determination that brings about real change. Environmental integration may feel good when we send our children off to the same schools as their siblings, but when there is such a disparity between what our blind children get and what their sighted colleagues receive, we simply have to say that we have a broken system and begin figuring out how to fix it. Let us not be derailed by those who will say that the system is broken for everyone, for we know that is not true. If the system in which blind people function could be easily fixed, someone else would've done it. We must pledge ourselves to a solution, one that clearly prioritizes helping children over supporting the status quo or worrying about offending parents who believe we are trying to make their children different by emphasizing skills and tools their sighted classmates don’t use.

What might we put on the table for consideration? This very question is key to why the article you are reading is appearing in the Braille Monitor. Good ideas don’t just come from authors. Good ideas come from people who have experience and brains. Positive results come from being willing to share them. If this is the first and last article we see on this subject, I have wasted your time, my time, and our resources. But my most fervent hope is that this is the beginning of something positive.

Who besides us should be involved in our quest to find answers? No one has more daily contact with children than teachers, so they should have a place at the table. School administrators have to decide how to spend precious resources, so they should have a place at the table. The legislative and executive branches of government fund what gets done and set the stage for the regulations that implement how it will be done. Certainly they too need a place at the table. But change won’t come from all of these folks. We will have to initiate it, solicit their input, incorporate it where we can, and, most importantly, get them to join with us as allies and start down the long road of fixing education so that our children can achieve the dream of real integration with sighted people. This is where you come in, so please do!

A Mother in Wonderland: Securing Services for My Blind Child

A parent navigates complex education policy to secure services and supports for her blind child

by Carla Keirns

From the Editor: Carla Keirns is the mother of a blind child named Russell. She is active in the Kansas City Chapter, the Missouri affiliate, and the National Organization of Parents of Blind Children. This article was not written for the Braille Monitor but for Health Affairs, a leading journal in the area of health policy. Most of what it publishes are data-driven articles about how to improve the health care system. It has long had a section called “Narrative Matters,” where it publishes essays in which a personal story illustrates the need for policy change. Its usual audience is scholars in health policy, and policymakers such as congressional staffers and think tank scholars. We run the article here because it shows just how difficult getting a blind child a quality education can be.

As you read this, think of all of the advantages this family has. Carla is a medical doctor active in research. Michael Dorn is a geographer and specialist in disability policy and universal design. Both are well-versed in reading and writing. Both are used to functioning in complex systems. Both are well connected. Both have more flexibility than most people who are employed. Last, but certainly not least, together they have an income that far exceeds that of most parents who are trying to get services for their blind child. Even with all of these resources, it is questionable whether their son is getting the kind of education that he needs to graduate from high school with efficiently being able to read and write being second nature. It shouldn’t be this hard, and for most people it means that they do not achieve the education they wish for their children. Their children do not come to the rehabilitation system with the skills they are presumed to have. They do not arrive at the doors of higher education with these skills. Somehow, magically, we expect rehabilitation, a school of higher education, or a strong consumer group such as the National Federation of the Blind to find a way to equalize it all. Miraculously, sometimes this happens, but for far too many children, as adults they take jobs that are far below their capabilities or, more tragically, they don’t find any jobs at all and function with incomes that are meant to provide a safety net but not a way of life. Here is what Carla has to say, preceded by her introduction in the journal:

Copyrighted and published by Project HOPE/Health Affairs as Carla Keirns, "A Mother in Wonderland: Securing Services for My Blind Child." Health Affairs (Millwood). 2020, vol 39, issue 10, pp 1832-1836. The published article is archived and available online at www.healthaffairs.org/. Reused with permission from Project HOPE/Health Affairs.

Carla Keirns ([email protected]) is an assistant professor of medical ethics and palliative medicine at the University of Kansas Medical Center, in Kansas City, Kansas. She serves on the Missouri Department of Elementary & Secondary Education’s Blind Task Force and on the Board of the National Organization of Parents of Blind Children.

It was my son’s first Halloween. It turns out that 3 p.m. on October 31 is an excellent time to get in to see a high-demand pediatric specialist. He was fourteen weeks old to the day.

We didn’t have any reason to think there was anything wrong with my son’s eyes except family history. I wore glasses as a little baby, cute silver-wired ones with frames that wrapped around my ears. So did my sisters. My husband did, too, though his were heavy black plastic frames, a strong contrast with his blond hair. Both of my sisters had surgery for crossed eyes before they were a year old. I knew the reason to do that for a newborn was so that the eyes and the visual processing areas of the brain had a chance to develop in concert.

So there we were, my baby boy with blue eyes and snow-white hair in a gray footed one-piece, mesmerized by the doctor’s collection of light-up toys for watching babies fix, track, and move their eyes. The doctor came and looked at him and then said he would be back after my son’s eyes were dilated.

After thirty minutes we were ushered back into another exam room. My son sat on my husband’s lap while the doctor examined him.

“He’s blind,” the doctor said.


I remember the rest of the conversation as a competition between the doctor’s words and my racing thoughts. It was like being on the cartoon Peanuts with the adult’s voice saying, “Wah, wah, wah.” He told us he would refer us to the New York State Commission for the Blind.

“Will he read? Will he drive? What will happen to him?” I had a million questions, but mostly I was perplexed by the word “blind.” He was only three months old. He didn’t pay much attention to things around him, but he could clearly see.

In the next couple of days, I started reading. By the end of the week, my sister threatened to take away my internet privileges.

I learned what blind meant. The Snellen chart, developed by Dutch ophthalmologist Herman Snellen in 1862, has a large letter E at the top, which is the 20/200 line. The next line is 20/100. If you can see the E but not the rest, you are legally blind.

But was my baby blind? There was no way to know for sure; it would be years before he could tell us what he could see.

Our Little Family

My son is the only child of two academics. I am a physician and health policy scholar. My husband is a geographer and specialist in disability policy and universal design. Despite our professional training, the lines between what services are provided through health insurance versus educational mandates versus private charity were very confusing. We just wanted to know how to help our baby.

In those first months, neither our eye doctor nor our pediatrician mentioned “early intervention,” a term for the services and supports that are available to babies and young children with developmental delays and disabilities and their families. My husband was teaching a class on the history of disability that semester, and a pediatrician taking his course told us to sign our son up right away. These services are funded under the Individuals with Disabilities Education (IDEA) Act, which in 1975 guaranteed access to a free appropriate public education for all children with disabilities. I knew a little about that history because in 1972 my older sister was denied access to kindergarten in our local public school. She has what is now called high-functioning autism. My mother remembers being told, “We have no programs for a child like yours.”

Jam Every Other Day

Is disability policy health policy? Is it education policy? Is it labor-force policy? Or is it social welfare? From the perspective of a family, these distinctions make little sense. I have subsequently found they are similarly confusing to congressional staffers. For children with disabilities, disability policy is education policy, and we were clueless. I was like Alice in Wonderland, lost in a place where I understood the words people spoke, but they made no sense to me.

Services for disabled children are more fragmented and confusing than anything I had ever run into in health care. Your health insurance covers some things, typically those things that prevent and treat the disease that causes your disability. The things you need to work, go to school, or function in your daily life as a consequence of your disability are generally not covered by health insurance. Instead, you are in a whole new world. If you are birth to age twenty-one (in some states older) and need services and technology to go to school, they might be covered as part of special education under IDEA. If you are age eighteen to sixty-five and need them to be able to work, they might be covered by your state vocational rehabilitation agency. If you are over sixty-five, your state or local agency for the aging might pay for something that is needed to maintain your independence and stay out of a nursing home. If medical insurance, educational programs, vocational rehabilitation, social services, or aging agencies won’t pay for what you need, maybe you can pay for it yourself, get a grant, or try crowdfunding.

My now seven-year-old son needs a magnifier to do his homework—and, in the face of the coronavirus disease 2019 (COVID-19) pandemic, he needs it for virtual school all day long. Not one of those handheld magnifiers you can find for $1.99 or a paperweight “dome” magnifier that you can get for $20 or $30. He needs a full-page, electronic digital magnifier so he can see and complete his worksheets for school. They run $3,000–$6,000. In the past few years I have been to Washington, DC, to lobby for a tax credit to purchase “access technology” such as Braille displays and digital magnifiers. After I show the cute picture of my first grader and a flyer for the $5,000 device he needs, the first question I always get from congressional staffers is, “Doesn’t health insurance cover that?” It doesn’t. Even though it’s prescribed by a doctor, it’s not considered a medical device because it doesn’t treat his disease.

The Pool of Tears

Early intervention for children with disabilities is a program of the federal Department of Education, administered by the states. Six weeks after we saw the eye doctor, two women came to our house and played with our five-month-old son for about four hours. One was a special education teacher, and the other was a teacher of students with visual impairments. Two weeks later we received a thick envelope with a twenty-two-page report that pronounced that his cognitive development was in the second percentile for age, two standard deviations below the mean.

Our son needed support from a teacher of students with visual impairments and a certified orientation and mobility specialist. These are education professionals, not health care providers, and, for children, their services are provided through schools and education agencies.

Through early intervention, a teacher of the visually impaired came to our house twice a week. If we could optimize what our son could see with glasses, surgery, and therapy, he might avoid other developmental delays that are the predictable result of not being able to see and interact with one’s environment.

Who Dreamed It?

At age three, children move from early intervention programs to school-age programs covering children ages three to twenty-one, and they must be evaluated again by their school district to see whether they qualify for special education and related services. While early intervention has a dedicated funding stream from federal, state, and local agencies, special education for school age children is only partly federally funded, and it competes for resources with all of the other programs public schools need and want to provide. When IDEA mandated school districts to cover the specialized instruction and services required for a child to receive a free, appropriate public education, including speech therapy, physical therapy, occupational therapy, and assistive technology, the law included a promise to states and school districts that the federal government would cover 40 percent of the “excess” costs of educating disabled children above and beyond what the school spends for their students without disabilities. At the time it was estimated that it would cost twice as much per student to educate disabled children, so the funding formula was tied to average per pupil expenditures for all students. Congress has never appropriated funds to cover more than 21 percent of that average expenditure amount for each student with disabilities, according to the Congressional Research Service. The National Education Association has calculated that in fiscal year 2019 IDEA funded 13.8 percent of average per pupil expenditure for each child covered by IDEA.

A Caucus Race

My son’s birthday is in July, and it takes about three to six months from the time of a request to evaluate a child for special education and start services (summer months don’t count, in our experience). So to continue to receive supports for his visual impairment after his third birthday, we had to contact our school district in January.

The staff was professional and outlined a plan. Review of records. Classroom observations. Evaluations. Then, if he qualified, an Individualized Education Program (IEP). It seemed to unfold in slow motion. Months went by. We submitted records from his doctors and his preschool. He came to the district’s preschool and matched plastic bears to cups of the same color. A teacher of students with visual impairments came to daycare to observe him. The daycare director told me she stayed twenty minutes. In April we met to review his evaluations. Yes, he had a disability that impacted his education. He qualified. Next step was to write an IEP.

But something about that meeting bothered me. I can’t say quite what, but it might have been the turtle. The teacher had brought a picture from her classroom observation of a coloring book page of a turtle on which my son had scribbled with a green crayon. There was no evidence of even an attempt to color in the lines or if he saw them. She said, “All the other kids’ pictures looked the same.” He had been evaluated in August, nine months prior, by the early intervention team, and this teacher appeared to have done no other formal testing besides the brief observation. The only data she brought was a two-year-old’s scribbles. It seemed to me like the school staff were underestimating his needs.

The year he turned two, my son had considerable variation in his visual acuity measurements from examiner to examiner, day to day, and by time of day. He’d been seen by an ophthalmology team at the National Eye Institute as part of a research study, and by a handful of other ophthalmologists and optometrists. There are different tools for testing the visual acuity of babies, such as a version of the eye chart with pictures instead of letters, a hand, a bird, a birthday cake, a phone. A rotary dial telephone. I asked the examiner how many kids have ever seen a rotary dial phone. She laughed and said, “I give credit for any consistent answer.” Kids usually thought it was a spaceship.

Another test, using a series of cards with parallel black and white lines in progressively narrower configurations, suggested a visual acuity of 20/80. None of my son’s tests using an eye chart were better than 20/100; most were 20/200 or worse, some 20/500 to 20/1000. The exam done by an ophthalmologist during the IEP evaluation process found him to be 20/200 by use of the picture eye chart. The school staff didn’t perform their own test.

A Mad Tea Party

It was a beautiful Thursday in May. The special-needs parent blogs all said to bring snacks, so I did. I met the school’s teacher of students with visual impairments in the school office. I brought a drawing of a rainbow to go with the turtle. A few weeks before, his occupational therapist had used markers to outline a rainbow and had given him bingo dotters to fill in between the lines. He did so enthusiastically—on the right two-thirds of the page, indicating classic neglect of his left visual field. If we’re going by the preschool art, both showed he has vision loss affecting his performance.

One by one, the rest of the team arrived—several staff from our new school district, several staff from the preschool for blind kids that my son was attending, and me. My husband was at work, and I didn’t bring anyone else.

The school team handed out the nineteen-page draft IEP. Near the bottom of page four it reported the visual acuity of 20/80 from the National Eye Institute study the previous year. There was no mention of the most recent eye chart assessment of 20/200. On page seventeen was a special form for children classified as blind and visually impaired, which requires the team to document whether the child needs Braille use and instruction. The team checked “No.” The section below that where they were supposed to explain why was blank.

We were offered a spot in the school district’s preschool based on my son’s visual impairment but were denied specialist services such as a teacher of students with visual impairments, instruction in Braille, an occupational therapist, or a certified orientation and mobility specialist. I was perplexed. How do you qualify a child for special education due to his visual impairment but then deny him all of the specialized services that are designed to accommodate his vision loss?
When I questioned the plan, I was told that it was the last day of school, and if I didn’t agree, we could meet again in August. But if he didn’t have an IEP in place on his birthday in July, he would lose his final few weeks of early intervention services.

The Queen’s Croquet Ground

I knew the school’s clinical assessment was wrong, but no one would listen. I didn’t know what to do, but I knew why it mattered. My younger sister did not read at grade level until she was twelve. We didn’t understand why she wasn’t reading until she failed the first grade—twice. It was probably a milder form of what my son has. It took her four years to catch up. I was determined not to watch that happen again.

I talked to the staff of my son’s preschool, and they were almost as shocked as I was. We were referred to our state vocational rehabilitation agency for the blind. Everyone said to call a new IEP meeting in August, but none had a good answer for summer services before then.

I called the federal Department of Education’s Office of Civil Rights and was advised that they could not help until he turned five. They referred me to my state Department of Education’s Special Education department, and their compliance staff advised me to request an independent educational evaluation. I called our school district again and was told to call back in three months.

What was I supposed to do then? Hire a lawyer for my three-year-old and sue our school district? Privately pay for the preschool for blind kids, for assistive technology, for therapies?

I decided that if I fought the district and won, what I would get was the services of the teacher for students with visual impairments who didn’t think my son needed any help. And it would take a year, or two, or ten. It would cost more than paying myself to enroll him in our local nonprofit preschool for blind kids, where I could trust that he would get what he needed. So we stayed at that preschool for three more years.

Down the Rabbit Hole

When the time was approaching for kindergarten, we were advised to move to another school district. Several other districts in our city have better reputations for special education than ours. Ours is considered kind of middle-of-the-pack—good for some diagnoses, but it’s a smaller district and less familiar with “low incidence disabilities.”

This time I knew it would take six months to put together a plan with the school, so a year ahead, I started planning.

I began going to special education workshops run by my state Parent Training and Information Center and by a company called Wrightslaw. I started reading and going to conferences, and I joined Facebook groups for parents like me. In one group, I wound up messaging with a teacher of students with visual impairments who now works as an advocate. After reviewing our old IEP and my son’s evaluations, she had ideas for new assessments and a strategy for asking more of the school.

I was still terrified.

One day my little boy overheard me talking to a family member about whether I needed to hire him a lawyer.

“Mommy, why do you need a lawyer?” he asked.

“I don’t need a lawyer,” I said. “You need a lawyer.”

“Mommy, why do I need a lawyer?”

I explained how a lawyer advocates for you to help ensure that your rights are protected. I explained that he would need help to learn to read because of his eyes. He said, “Mommy, I want my lawyer to help me get everything I need.” I paid the retainer the next day.

This time when we went to the school district to ask for an IEP, I was not alone. I brought the advocate, who knew what to ask for. I brought the attorney, who knew how to get it. When my son entered kindergarten, we had a plan that included all of the services he had been denied three years before.

Schools don’t see many blind kids. That’s a good thing. But it also means that they don’t know what they don’t know. Blindness and visual impairment severe enough to require special education are estimated to be found in less than 0.4 percent of the more than six million school-age children receiving special education in the US, according to the 2019 Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act.

When I asked one of my son’s teachers of blind students what usually happens to children like my son, she said, “I don’t want to tell you.” She didn’t have to. We know what happens. Kids like my son, legally blind but with substantial usable vision, are often okay through kindergarten—like my sister. Some make it through first grade and even second. In third grade the reading demands increase, the font sizes get smaller, and they can’t keep up. Staff or families realize at eight, nine, or ten years old that the child needs more help. But by then they are years behind. Their friends are going on to reading Harry Potter, and they have to go back and learn their ABCs, now in Braille.

Through the Looking Glass

The core problem goes back to that decision by Congress in the 1970s to place much of the responsibility for providing disability services to school-age children on schools. It makes a certain amount of sense. Not all kids have health insurance. Children spend the majority of their waking hours in school. Public schools can provide universal access. They might not have all of the expertise one would need to assess and manage all children with all kinds of disabilities, but they can receive federal and state funding to support specialized instruction, related services, and assistive technology.

But not all schools are created equal. According to the US census, in fiscal year 2016 New York spent $22,366 per pupil and Utah spent $6,953. Where we live, at the border of Kansas and Missouri, the states spent $9,960 and $10,313, respectively. Schools face funding shortfalls along with challenges finding experts for less common disabilities. And Congress has never met its promise to fund the educational mandate of special education at 40 percent of the “excess” costs of educating special education children. In March 2019 Rep. Jared Huffman (D-CA) introduced the IDEA Full Funding Act in the House, but there has been no further action since then.

In my role as a special-needs mom, everyone told me that my job was to advocate for my child. Of course I would advocate for my child. Who wouldn’t? The better question is, who cannot?
Navigating the fragmentation of services, the complexity of eligibility rules, and the sometimes adversarial processes of determining appropriateness of services is more manageable for those with time, money, education, and expertise. This means that the likelihood that a child will receive the medical, educational, and rehabilitative services and equipment they need to improve their functioning and start their education on a level playing field can depend on their parents’ situation and supports. This is, of course, true of our medical and educational systems as a whole, but for disabled kids and their parents, the stakes are even higher.

The COVID-19 pandemic has added a new wrinkle to our story, only underlining the degree to which we rely on schools for services for children with disabilities. When schools closed in the spring because of COVID-19, my son’s school provided remote occupational therapy and remote Braille instruction until the end of the school year. We worked by phone, by video, and in person over the summer with Braille teachers we paid out of pocket, and we used our health insurance for virtual occupational therapy. Despite our best efforts, we could not duplicate the educational benefits of the services he was getting during the year. My son has lost most of his kindergarten year’s gains in Braille, and there is no way he will be able to read Braille at a first-grade level this fall.

And with school at home for the foreseeable future, he still needs that expensive digital magnifier, among other supplies, so he can do his schoolwork at home.

So what can parents do? They can educate themselves. Seek out support groups of other parents. Take advantage of Parent Training and Information Centers in their states, as well as Family Voices/Family to Family agencies that support children with disabilities and their families. But it’s critical to recognize that in an unequal society, putting the burden on parents to advocate for their kids further worsens inequalities.

What can policymakers do? They can fully fund IDEA. Reconsider where the boundaries are being drawn between therapy and education and between devices that are paid for by health insurance and those paid for by schools, assistive technology programs, vocational rehabilitation agencies, and private charities or family resources. Why is Medicare classifying digital magnifiers and other high-technology visual aids in the same category as eyeglasses? The reason disability-related assistive technology is so difficult to get, prices are so high, and the market is so small is that there is no reliable funding stream for this technology to create a sustainable market.

I study health disparities, and I think that educational disparities are equally if not more likely to lead to premature disability and death. It’s not my son I’m worried about. I’ve met a lot of mothers who have become full-time advocates for their kids. I’ve met a lot of adults with disabilities who didn’t get the help they needed to learn to read or do math or have a fair chance at independent living. I’ve met attorneys and advocates who are fighting systems designed not to give kids what they need to meet the goal of the Individuals with Disabilities Education Act: “to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living.” It should not take a mom who is a doctor, or a lawyer, or tens of thousands in disposable income to be able to get a free appropriate public education and the supports a disabled child needs for basic access to education, employment, housing, and an open future.

Policy Checklist

The issue: Much of the responsibility for providing disability services to school-age children rests on schools, and parents of children with disabilities must navigate complex rules about which services are provided by schools or covered by health insurance and which must be paid for another way.

Related reading:

Applegate J. “Countdown: School Districts That Spend the Most Per Pupil and States Ranked by School Funding,” Columbus Business First, 2018 May 24, https://www.bizjournals.com/columbus/news/2018/05/24/countdown-school-districts-that-spend-the-most-per.html

Corn AL, Spungin SJ. “Free and Appropriate Public Education and the Personnel Crisis for Students with Visual Impairments and Blindness,” University of Florida, 2003 Apr, http://copsse.education.ufl.edu/copsse/docs/IB-10/1/IB-10.pdf

National Education Association. “IDEA Funding Gap by State, FY 2019,” 2019 Mar 22, http://www.nea.org/assets/docs/IDEA-Funding-Gap-by-State-FY-2019.pdf

US Department of Education, 41st Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2019, 2020 Feb, https://www2.ed.gov/about/reports/annual/osep/2019/parts-b-c/41st-arc-for-idea.pdf

The Importance of Expectations

by Steve Jacobson

From the Editor: This article first appeared in the summer edition of the Minnesota Bulletin, the newsletter of the National Federation of the Blind of Minnesota. This is how it was introduced:

Editor’s Note: The following was presented as part of a panel for parents of blind children at a Career Day for Blind Youth on April 27, 2019, sponsored by State Services for the Blind and the Minnesota Department of Education. While Steve is specifically challenging parents here, I love the way he consistently teaches all of us to have high expectations of ourselves.

Like you, I know how difficult and challenging it can be to be a parent. Even though my two kids are now adults and mostly making their own way in the world, the worrying does not stop. There are more than enough challenges raising kids who have normal vision, but raising kids who are blind or visually impaired as is the case for my kids adds yet another layer to what is already more than enough to keep one busy. As one who was also once a blind child, even though that was some years ago now, I want to thank you for taking the time to be here today. Since I have this opportunity to speak with you, I want to take a word that you hear often, that being “expectations,” and perhaps bring it to life.

First let me share the experiences of some sighted parents of a blind child for whom I have a great deal of respect. They happen to be my parents. When I was two years old or so, my mother decided she needed to rearrange the living room furniture. After this task was completed, she had neighbors over, and they observed some confusion on my part with the new arrangement. Several expressed horror that she would rearrange the furniture and make her poor little blind child learn it all over again. My mother, who was sighted, knew though that to get by in life I had to be able to learn how to navigate in a changing environment. The new arrangement remained in place, and I adjusted fairly quickly, but she endured some pretty harsh criticism during that time.

When I was perhaps seven years old, my father was installing a television antenna on the roof of our house. He needed someone to help him hold the pole still while he completed the installation. As the oldest child in the family, he brought me up on the roof to assist. Once again, a different set of neighbors were shocked to see a blind child up on the roof. Unlike the rearranging of furniture, I clearly remember the afternoon on the roof installing the TV antenna. I remember being aware of needing to be careful, but I do not remember it being a fearful experience once I got busy, certainly not as fearful as it was for the neighbors who watched. My guess is that it was even a bit scary for my parents.

As I grew into my teens, I was very interested in short wave radio and therefore was interested in stringing wires across our roof to act as a good receiving antenna. I do not remember asking permission to do this; I just went ahead and did it, as teenagers mostly do. Years later, my mother told me that yet another set of neighbors thought she was an awful parent for letting that blind teen be on the roof by himself. My mother told me that she told the neighbors that I was smart enough to know it was in my interest not to walk off the edge. However, I know by talking to my mom about this years later, that it was not an easy thing for her to do, and she probably had some doubts herself.

All of these seemingly unrelated experiences helped me succeed in college. I was one of those kids who really liked math. The so-called wisdom of the day was that blind college students should stick to other subjects such as the social sciences. I was not sure exactly how I would handle college math classes, but I had faith, partly based upon the expectations of my parents, that I could figure it out.

It was at that time that I became aware that expectations were not just something imparted to me by my parents. I became an active member of the National Federation of the Blind, and among other things, I attended annual conventions. I met blind people there who were already doing some of the things I wanted to do. I discovered, sometimes to my disappointment, that I was not all that special. I learned about a couple of blind professors who taught mathematics at the college level and about others who had studied the sciences. I joined a group of blind computer programmers and learned other blind persons were working in that field and making a nice income. In the end, I earned a degree in mathematics and went on to work full time in the computer field.

I thought about all of this many years later when I was employed and owned my own home. I realized that although my parents had no idea what I would do for a living, it was made clear that they expected I would grow up to live independently and have a job just as it was assumed would be the case for my sighted brother and sister. When, as an adult, I had to go up on the roof to clean leaves out of the gutters, I heard through the grapevine that an older neighbor was close to having a heart attack watching me up there. It therefore seemed better for him if I did my gutter cleaning at night. It didn't matter to me after all if I performed the task in the dark. More to the point, though, I realized I was on my roof cleaning out gutters because my parents encouraged me to try things when I was growing up. They had expectations that I would succeed, and I had learned from other blind people that my life could be as normal and rich as anybody’s life.

As much as I came to appreciate the expectations that my parents had for me, I did not realize until I was a parent myself how very difficult that had to have been for them. Having one's parenting skills questioned by neighbors must have been very difficult. Besides the gift of expectations they gave me as a blind person, it made me more aware of the importance of having expectations for my kids, and also, to figure out when I need to sit back and let them try to succeed or even fail on their own.

Sure, I did bring one of my girls up on the roof so she knew there was no particular mystery in doing that, but your kids may have no interest in such an experience. However, some of your kids will do things that I never did. We don’t all excel at the same things. The important thing is that we convey to our kids that we expect they will succeed, even when we occasionally don't know how it will happen. As mentioned before, I grew up assuming I would go to work every day just like my dad did. Yet, I know now that my dad didn't know what kind of work I would likely do. He would never have dreamed I would work for more than forty years in the computer field. Still, he somehow conveyed the expectation that I would be going to work every day.

I did my best as a parent of two girls with varying degrees of vision loss to convey the same expectation to them, that they could accomplish what they set out to achieve. Besides being concerned that they not let poor vision stand in their way, I was concerned that they not allow their goals to be limited by the fact they were girls. It is too soon to know for certain how their stories will play out, but they are both on good paths. In the end though, as parents we can set expectations, provide tools for success, and give as much support as we can, but our kids will have to take what we have given them and go as far as they can. Still, as I learned from my parents, our kids will sense our expectations of them and will go much further because of our encouragement and the expectations we convey to them. Doing this and knowing when we need to let go is extremely difficult at times. However, I have come to understand through my own life that expectations are some of the most important gifts we can give to our kids to help them succeed. I know this is true because it is one of the most valuable gifts I received from my sighted parents.

A Note to Motivate Myself and Clarify My Path

by Maureen Nietfeld

From the Editor: People who remember the scholarship class of 2019 will remember Maureen Nietfeld. She faces more obstacles each day than many of us will face in a lifetime, yet she does not complain. What follows is a diary and a motivational talk she gave to herself. When a friend saw it, Maureen was encouraged to send it to the Monitor to see if there was anything worth publishing. She did, we did, and now you can benefit. When I read this, I think of the number of pity parties I’ve attended on my behalf and how often I’ve seriously considered giving up. Whatever Maureen may have considered, giving up was not what she did. Enjoy!

I let blindness and many medical problems act as a barrier to my ultimate dream of getting my degree, so in January of 2017, I made the decision that I would no longer let this be. I started going to school at Metropolitan State University of Denver and set my goal to pursue a bachelor’s degree in lifestyle medicine with a minor in pre-healthcare. It was also in January 2017 that a repeat MRI of my brain indicated that I would ultimately need another brain surgery and a treatment of stereotactic radiation. It seemed that my never-ending cycle of barriers was beginning again. I had said to myself that I was going to finish this degree no matter what challenge would meet me in the years to come. My journey began, and the challenges over the next three years were definitely not in short supply.

In February 2017 I had my first round of stereotactic radiation. The doctors assured me that there would be no side effects, and I could go about my life the very next day. Unfortunately, I fell in the 1 percent, and within one hour after radiation my brain began to swell. I had to begin a regimen of high doses of steroids to combat the brain swelling, and for the next two years, due to the brain pressure, I would throw up pretty much every single day. I continued to make it through my first semester. After discussing the need for a very dangerous brain stem surgery, we decided to schedule it in May so I could finish my semester. My plan was to recover over the break and begin summer classes in June.

Around this time, I was also notified that I was selected as one of the thirty finalists in the NFB national scholarship process. This meant that I would be going to national convention in July. I figured that having surgery in May would allow me plenty of time to begin school in June and attend the convention in July.

The surgery was definitely more complicated than anyone anticipated, and my recovery was nothing like I had ever experienced in the thirty-plus surgeries prior to this one. The surgery caused severe damage to my right side, and I was left with the inability to use my right hand and arm. Ultimately the function and feeling in my right hand would never return, and I am left with increased balance issues and pain. I attended the national convention in July with the assistance of my mother and a wheelchair. I was awarded the top scholarship that year. To say that I was elated would be an understatement. My colleagues in the organized blind movement supported me again with not only this unbelievable honor but funding that would help me pursue my academic and vocational goals. I was more than elated. But I really had no earthly idea how I would finish my degree. How would I be able to finish school not being able to use a computer anymore, having to relearn so much, and living in this awful pain? I knew that the National Federation of the Blind believed in me, and therefore I had to find the strength to continue to believe in myself. My friends and loved ones rose up to support me as well, and I knew that together we would find a way.

Learning to type one-handed was not an option because I had already been doing that. Due to a stroke when I was twenty-five, I had limited feeling in my left hand. I had been one-handed typing all these years using my right hand, and now that was taken away as well. I ultimately learned to be left-handed. Through the use of an iPhone, readers, and scribes, I continued with school. One of my dearest and best friends, Erin Daley, has worked tirelessly as my reader scribe. We developed a fantastic way of working together, and I was filled with promise that, with these modifications, I had found a solution. I was able to complete the summer courses that year and continued with the fall semester. I was also able to return to work as a home management instructor at the Colorado Center for the Blind. I continued to just slowly figure out my world with this additional disability. Travel became a major struggle, having to use my left hand and dealing with all of the balance issues, but I was able to receive a guide dog. Reilly has been an amazing addition to my life and my family’s life.

Nine months later I was continuing a slow recovery but ultimately felt like I was regaining my life. In February we received the biggest shock of my life—I was pregnant! I was always told that pregnancy would be too risky for me. Pregnancy can cause a progression in my disease and ultimately more tumors could grow. I also have a kidney transplant, and pregnancy could cause my transplanted organ to fail. There were so many fears, but the joy of this amazing miracle stifled all of them.

I continued to go to work, school, and adjust to my new normal. I was a new guide dog handler, a person with a multiple disability, and soon I would be a mom. On August 13, 2018, we went to the hospital, and I was in labor. Logan wouldn’t actually arrive until August 15 due to some major complications. I had become preeclamptic, my brain was swelling, and my kidney was failing. The physicians and nurses worked tirelessly around the clock to keep me stable, and Logan and I pulled through. The next seventeen days were the hardest of my life. Logan had to stay in the NICU because he was only thirty-four weeks. I was sicker than I think I ever had been in my life and was struggling every day. Eventually, after what seemed like an eternity, that nightmare ended, and we were able to bring Logan home. We had decided that I would leave my job at the Colorado Center for the Blind and stay home to be with Logan. I continued to attend school and was able to find employment that allowed me to work part-time from home.

Once again, I was adjusting to my new normal. I was no longer a home management teacher at the Colorado Center for the Blind, but I was more than thrilled to be a mom. I loved every minute I got to be with Logan, and I continued to recover and took that fall semester off to adjust to our new life. I returned to school that January, and soon after the terrible headaches began again. It was the summer of 2019. The convention of the National Federation of the Blind was in Las Vegas, and of course David and I attended. It really became evident to me that something was very wrong that week. I constantly had terrible headaches, dizziness, and just knew something was wrong. When we got home, I made an appointment for my routine MRI of my brain. It showed that an existing brain tumor had gotten significantly larger, and we would need to operate. They wanted to operate that September, but I opted to deal with the side effects I was experiencing until December so I could complete another semester of school. On December 5, 2019, I had to get another brain surgery. This would make my thirty-fifth surgery. I was able to work with my teachers that semester and finished two weeks early. I was able to submit all my work in advance and took my finals early. I then had forty days to recover until the next semester.

The semester of spring 2020 I took eighteen credits, meaning I only had five credits to complete in summer of 2020. August 13 has been an amazing day in my life. That day nine years ago David and I were married, two years ago I went into labor with Logan, and I received an email from my university that my bachelors of science in lifestyle medicine with a minor in pre-healthcare had been awarded.

Three years, two brain surgeries, brain radiation, and a baby later I am finally a college graduate!! I wrote this down as a reminder to myself and one day to Logan that dreams can become reality. No matter what challenges lie ahead, we all have the strength to rise up and face them.

The Diabetes Action Network Is as Important as Life and Death

by Debbie Wunder

From the Editor: Debbie Wunder is the newly-elected president of the Diabetes Action Network. She believes that everything we do is serious business, but sometimes we forget how important some of our divisions can be. Here is what she says:

Diabetes is unquestionably one of the leading causes of blindness in the United States, its only competition being age-related diseases of the eye. November is Diabetes Awareness Month, and perhaps this is a good time for us to take stock of our role in helping blind people. With good information, we can lessen our chances of getting the disease. If your doctor tells you that your blood sugar is a little high and that you are classified as a prediabetic, don’t shrug it off and decide you have more serious problems to worry about. If you can avoid getting the disease, your chances of developing heart trouble are decreased, and your chances of living longer are increased.

If you already have the disease, careful management can spare you many of the debilitating consequences that can spring from it. Far too many blind people with diabetes don’t know that they can perform the frequent blood tests that are required to manage it. Too few of us understand that new technology can now help us avoid the finger sticks that were once a part of diabetes management, that this new technology is generically referred to as continuous glucose monitoring, and that there are several devices on the market that blind people can read with the assistance of a smartphone.

This division of the National Federation of the Blind has committed itself to being more visible and active. This will include frequent contributions to the Braille Monitor, monthly seminars open to all using the Zoom platform, and encouraging even more participation on our Diabetes Action Network listserv.

All of the programs we run in the National Federation of the Blind are important in helping us live the lives we want, but the work of the Diabetes Action Network may well determine how long that life is. We need your help in building and strengthening the division so that in turn it can help build and strengthen our Federation. Good diabetes management both extends life and the quality of that life. The information we dispense may be the determining factor in whether people can continue to read Braille, travel independently by using the feeling in their feet, and stop the amputations which all too frequently occur when good diabetic care is not observed.

If you have an interest in learning more about the work of our division or becoming part of it, please write to me. My address is [email protected]. You can subscribe to our listserv by going to nfbnet.org, join or drop NFBNet mailing lists, and click on the link that says Diabetes Talk. You can also sign up as a member by sending dues of ten dollars to Treasurer Joy Stigile. You can do this by check payable to the Diabetes Action Network in the amount of $10 and mail it to 19831 Friar Street, Woodland Hills, CA 91367. You can use Apple Pay using the phone number 818-419-5331 or through PayPal using the email address [email protected]. Regardless of how you pay, please note that you are paying dues for the division.

Do something that is both in your self-interest and beneficial to others. Learn about diabetes, how blind people can manage it, and how all of us, working together, can create a healthier America.

Leave a Legacy

For more than seventy-five years the National Federation of the Blind has worked to transform the dreams of hundreds of thousands of blind people into reality, and with your support we will continue to do so for decades to come. We sincerely hope you will plan to be a part of our enduring movement by adding the National Federation of the Blind as a partial beneficiary in your will. A gift to the National Federation of the Blind in your will is more than just a charitable, tax-deductible donation. It is a way to join in the work to help blind people live the lives they want that leaves a lasting imprint on the lives of thousands of blind children and adults.

With your help, the NFB will continue to:

Plan to Leave a Legacy
Creating a will gives you the final say in what happens to your possessions and is the only way to be sure that your remaining assets are distributed according to your passions and beliefs. Many people fear creating a will or believe it’s not necessary until they are much older. Others think that it’s expensive and confusing. However, it is one of the most important things you will do, and with new online legal programs it is easier and cheaper than ever before. If you do decide to create or revise your will, consider the National Federation of the Blind as a partial beneficiary. Visit www.nfb.org/planned-giving or call 410-659-9314, extension 2422, for more information. Together with love, hope, determination, and your support, we will continue to transform dreams into reality.

Invest in Opportunity
The National Federation of the Blind knows that blindness is not the characteristic that defines you or your future. You can live the life you want; blindness is not what holds you back. A donation to the National Federation of the Blind allows you to invest in a movement that removes the fear from blindness. Your investment is your vote of confidence in the value and capacity of blind people and reflects the high expectations we have for all blind Americans, combating the low expectations that create obstacles between blind people and our dreams.
In 2019 the NFB:

Just imagine what we’ll do next year, and, with your help, what can be accomplished for years to come. Below are just a few of the many diverse, tax-deductible ways you can lend your support to the National Federation of the Blind.

Vehicle Donation Program
The NFB now accepts donated vehicles, including cars, trucks, boats, motorcycles, or recreational vehicles. Just call 855-659-9314 toll-free, and a representative can make arrangements to pick up your donation—it doesn’t have to be working. We can also answer any questions you have.

General Donation
General donations help support the ongoing programs of the NFB and the work to help blind people live the lives they want. Donate online with a credit card or through the mail with check or money order. Visit www.nfb.org/make-gift for more information.

Even if you can’t afford a gift right now, including the National Federation of the Blind in your will enables you to contribute by expressing your commitment to the organization and promises support for future generations of blind people across the country. Visit www.nfb.org/planned-giving or call 410-659-9314, extension 2422, for more information.

Pre-Authorized Contribution
Through the Pre-Authorized Contribution (PAC) program, supporters sustain the efforts of the National Federation of the Blind by making recurring monthly donations by direct withdraw of funds from a checking account or a charge to a credit card. To enroll, visit www.nfb.org/make-gift, and complete the Pre-Authorized Contribution form, and return it to the address listed on the form.

Rich and Blind: I’m Here to Tell Ya

by Peggy Chong

From the Editor: The older I get, the more I like people who are fanatical about things. They are exciting. Their commitment is inspiring. When I first met Peggy Chong, I had no idea that she had any interest in writing. I knew that she and her computer were often at war and that her husband Curtis often came to the rescue. Whether he was rescuing the computer or Peggy was never quite clear. I did not know that this interesting woman was fascinated by history, but certainly readers of the Braille Monitor know it now. Here is another in her stories about blind people who might be overlooked were it not for her efforts. If you would like to learn more about her publications, you may contact her at [email protected]. Here is what she says:

Hello Blind History Lady fans. This month we highlight a man who was rich as a sighted man and remained rich after he lost his sight, despite spending a lot of money on a cure.

Meet Charles Frederick Luthy, who was born March 1, 1894, in Albuquerque, New Mexico, to Civil War veteran and Albuquerque Mayor John Luthy. Fred, as he was called by family, went into banking, following in his father’s footsteps. He married at the age of forty to Cyrene, and they had two children.

On June 23, 1938, he and others from the Albuquerque National Bank (ANB), traveled to the Two-State Drilling Company’s operation six miles southwest of Monument, New Mexico. Bank President George Kaseman from ANB was investing in the mine, and he wanted to see the process of drilling through rock known as "shooting the well." This involved sending down a shell filled with nitroglycerine that detonated below the surface to increase the flow of the oil.

About 5:30 p.m., the blasting crew removed the nitro "bomb” from the truck. The audience was standing within 150 feet of the drilling rig, usually a safe distance, when the bomb just exploded. Kaseman was killed along with seven other men. Fred and four others were seriously injured. There was a bright flash, and Fred knew this was not good from his days working in oil fields. Then the boom. He thought of his wife and little boy back in Albuquerque. Fred made it to his friend George to see if he could help, but George was dead. Funny thing, Fred remembered his last thought, “It would have been nice to own a Cadillac.” Then all went black.

Because of the remote location, it took an hour before help could reach the site. After treating the wounded, they were transported over rough terrain to the local Hobbs Hospital. Doctors and nurses were sent from Albuquerque to Hobbs to help care for the wounded men.

As soon as Cyrene was notified, she contacted a pilot friend, Bill Cutter, and their doctor, P. G. Cornish. There was no airport of any kind in the Hobbs area, so they landed in a field near town. The next day the three from Albuquerque loaded Fred into the plane and flew home.

Fred was admitted to the Presbyterian Hospital in Albuquerque where he remained for two weeks recovering from his many wounds. The sight in one eye was gone. The sight in the other eye was not great, but he still had some vision.

Fred went back to the bank within a month of the accident. Knowing the sight in one eye was gone and he would soon lose the sight in his other eye, the question if he could be a banker as a blind man did not enter his mind. How to do it was the question! His memory had always been good, much better than his friends, and that was one asset. His second asset was his skill with numbers, which was rarely matched in the bank.

In 1938 there was little in the way of resources for any adult blind person in New Mexico. No matter how much money, there were no resources for blindness training. Fred was not poor and did not want to wait until he lost his wealth or standing in the community for any public assistance that the state department might offer him.

Fred wrote to doctors all across the country, looking for a specialist who could restore his sight. He spent time in a New York hospital, but there was nothing to be done. Fred had a glass eye placed into the empty socket left by the explosion that allowed him to look much better visually to his employees and customers. After he healed, there was little scarring unless someone looked closely. Fred wore eyeglasses, not dark glasses, that helped to minimize the visual looks of the scarring.

Fred still had his family investments, gold mines, oil fields, and more. He had his stock in the bank and rents from his many real estate holdings around town to bring in a steady income for his family. Many expected Fred would stay at home where he would be "safe and secure." With his financial status, he would still be accepted into many of the social clubs in which he held membership—or would he? He had raised funds for many charities, those “unfortunates” who did not touch his circle of friends. Would he now be seen as "one of those" and find himself on the outside of his circle, the object of pity or worse, a charity fundraiser!

It was the heart of the depression, tough times for any banker. But wait, wasn't it he who had set policies for his bank that kept it afloat when the banking industry had suffered through a depression in 1924? Was it not he, when President Roosevelt ordered all banks to close on March 6, 1933, who reopened his bank nine days later? ANB was the only operating bank in the city for six months. Since 1924, ANB, under his leadership, continued to grow from less than a million dollars in assets to more than four million to date, even under the constraints of the depression.

He reminded himself that at the close of 1934 the bank celebrated its tenth anniversary with thirty-three staff people including five women working in the bank, almost triple the amount of employees from its founding. Fred did the hiring and training of each of these individuals, and he could still hire and train staff even without his sight. From an initial handshake, Fred had learned to judge the character of a person. Blindness would not alter that.

One month after the accident, Fred was named president of the Albuquerque National Bank to replace his friend and mentor, George Kaseman.

Fred did not learn to read Braille. At first he relied heavily on recordings of meetings in his office he made on his Dictaphone. At the end of each day he would take the recordings home to his library where he had a table and comfortable chair for his after-hours work. He would listen to them again and again until he improved his memory. The Dictaphone and later the record player from the Library of Congress would be sped up to twice the speed for Fred's business and leisure reading. Most blind men and women in New Mexico did not receive library services, such as the record player and recorded books, because the Library for the Blind in New Mexico would not be established until 1967, four years after Fred’s death.

The days fell into a routine. Fred had a hired man who cared for the yard. After Fred’s accident, the hired man drove Fred to work. Fred's day began at 8:30 a.m. in the bank with a meeting of the loan committee. At 9:30, he blocked time with a secretary to read the Albuquerque Journal and the mail. Just like his reading with his Dictaphone and record player, he trained his secretaries to read quickly and to skim or jump to the more important sections of the reading.

He met with customers of the bank. Many of the customers did not know that Luthy was blind. It was not a big deal to Fred. He did not intend to hide his blindness or think it was the most important item about him. He also didn’t think it important in terms of the bank and how ANB would look after its customers’ loans and investments.

Fred continued to take notes in print. He would bring in his yellow legal pad and pen. During the meetings he wrote on the pad the notes he would need to look back at later. After the meetings he turned over the notes from the legal pad to his secretaries, who transcribed the notes and read them onto tape. By doing so, he maintained his ability to take notes and write effectively. Most likely his penmanship was not as good as it was in his twenties, but it was still sufficient and legible enough for his assistants to read them. Having a Dictaphone operating during a meeting with clients would be disconcerting to the client and stifle the flow of conversation.

Fred did not use the white cane normally associated with the blind. Inside the bank he knew his way around the business floor. Those who casually observed him would not have any reason to think the man was blind. At one point someone gave Fred a cane as a gift, but no one ever remembered him using it.

Few physical changes were made in the Luthy home or at the bank for Fred’s loss of sight; he simply made changes in his habits due to his new circumstances. When others from the bank weren’t available, Cyrene traveled with him as his guide to places he did not know and acted as his reader. It was not uncommon for a man of his position to travel with a secretary or wife, so few took notice of the presence of an assistant.

Cyrene and the children often took summer vacations in California. Fred followed, but only for a few days at a time. He boarded a train alone in Albuquerque and tipped a porter a few dollars. Then he’d ask that the porter come and escort him to the dining car at mealtime. At stops where Fred wished to get off, a porter provided the same assistance. After joining his family for a short vacation, Fred reversed course and repeated the journey home.

Each noon Fred would have lunch at the Alvarado Hotel just a short walk from the bank. His table manners suffered not one bit from his blindness, and he felt no discomfort or embarrassment eating in public. The one exception was that staff at the hotel were instructed to cut his meat before serving him.

When WWII broke out, many of his male employees were called to service or volunteered. Fred acted quickly by promoting female employees to teller positions. This was not a welcome move by customers at first. Yet Fred had faith in the women and sought out the local newspapers to promote his support for the war. He reassured the press and some of the men in the Albuquerque community who banked with his bank that there would always be one man at a teller cage for those who refused to conduct their financial transactions with a female teller.

By the end of 1942, there were twenty-eight women and thirty-three men working in the bank. Luthy was the first bank president in the state to promote a woman to an executive position. His forward thinking and his ability to see people for who they were, not their race, sex or any other feature, made him one of the leaders in hiring and promoting minority staff.

Not only did Fred work a full workday and week, but often he would take time on Saturdays and Sundays to catch up on reading or bank business. With his hand on his son Fred’s shoulder, they would go off to the bank to do business. Sometimes they would take the bus to the bank. The family had a pet dog, and one morning the two boarded an Albuquerque city bus with the mutt. The driver told them that they could not bring the pet on the bus.

"Oh, but it is a guide dog," Fred replied.

"Well…" the driver replied. Most likely the driver did not believe the two, but he did allow them to board and ride to the bank with the dog.

When the new ANB building was being built at Central and Second, Fred designed and oversaw the plans for the construction. On the weekends he would walk through the partially finished building in order to get to know the structure and monitor its progression.

After twenty-five years the bank presented Fred with a gold Swiss watch. This was not an ordinary watch nor was it a Braille watch. But it was still accessible for Fred. When pressing the button on the side, the watch would toll once for each hour. Another tone indicated the quarter hour, and then a third tone ticked off the minutes. This thoughtful gift was a prize possession of Fred's until his death.

On January 11, 1963, he and several of his fellow employees were having lunch at the Alvarado Hotel. Fred had a pain in his chest, and he mentioned it to his companions. Then he suddenly stood up and said he had to leave. Almost immediately, Fred collapsed. Attempts to revive him were unsuccessful. By the time the ambulance arrived just a few short minutes later, Fred was gone.

Fred left behind an estate estimated to be more than four million dollars. This made him one of the richest men in the state of New Mexico. His blindness altered his techniques, but in no way did it thwart his ambition or hamper his success as a businessman, a family man, or a leader in his community.

Free iOS App Now Available

by Scott White

The National Federation of the Blind has released version 3.0 of NFB-NEWSLINE® Mobile to the Apple App Store. The brand new, redesigned app not only allows subscribers to access all of the content available through NFB-NEWSLINE from their iPhone, iPad, or other iOS device, but it also includes a free basic version of the KNFB Reader mobile app. NFB-NEWSLINE Mobile includes these features and much more:

NFB-NEWSLINE Mobile 3.0 is fully accessible with VoiceOver so that users can hear content read aloud or read it in Braille with a connected refreshable Braille display or notetaker, making the app ideal for blind and deafblind users.

“We are pleased and proud that NFB-NEWSLINE Mobile 3.0—a technology solution created by blind people for blind people—is now a one-stop destination for access to all kinds of information, including printed text,” said Mark Riccobono, President of the National Federation of the Blind. “Having instant access to the information we need wherever we go helps all blind and deafblind people live the lives we want.”

David DeNotaris, who participated in beta testing of the app, said: “As a husband/father, entrepreneur, and elected school board director, access to print information is crucial! NFB-NEWSLINE provides me with fast, reliable, and accessible local, state, national, and international breaking news and information at my fingertips! At a recent school board meeting, a document was distributed in print with updated guidance that needed to be considered prior to a vote later in the evening. I used my NFB-NEWSLINE app to quickly and discreetly snap a picture and listen to the document through my earbuds, take some notes, ask questions, and make an informed decision. NFB-NEWSLINE helps me stay connected, empowering me to contribute on our local school board and compete in our global economy, allowing me to fit in, not sit out. Thank you NFB-NEWSLINE team, you are #DifferenceMakers!”

For more information about the NFB-NEWSLINE service and the new mobile app, please visit nfb.org/programs-services/nfb-newsline.

Braille Bank Statements: What Should We Do to Get Them?

by Curtis Chong

From the Editor: Curtis Chong is a man approached with many questions, and the reason for that is that he usually has the answer or a thought that will lead to one. Recently he has been pressed for an answer as to whether banks must make their statements available in Braille. Though he offers no answer, he does provide some perspectives and asks for help from others. Here is what he says:

I have been reading and writing Braille ever since I learned it at the tender age of five while in the first grade. There are many things I can do with Braille: proofread somebody else’s writing, read a good book in the middle of the night without disturbing anyone, deliver a speech, review a long list of financial transactions, or play cards with family and friends.

Despite my lifelong use of and success with Braille, it has never occurred to me to ask my bank to provide me with a statement in it. I suppose I just assumed that my request would be denied or that producing a Braille statement would take too long. Thinking about this, I rarely if ever refer to a bank statement after I have successfully reconciled it against my accounts. A bank statement is, for me, a document which, at most, requires an hour of my attention each month. Downloading an accessible PDF version of my bank statement is, for me, the most convenient option, and I am fortunate that I possess the technical wherewithal which makes all of this possible.

Some of my colleagues in the National Federation of the Blind who are excellent Braille readers but who have trouble navigating the complex website layouts which are often used in today’s online systems have asked me whether the law requires their banks to provide Braille statements. Apparently, their banks believe that offering electronic copies of statements fulfill the requirements of the law and that, therefore, they are not legally required to provide Braille statements to customers who ask for them.

Wells Fargo and the Bank of America offer Braille statements to their blind customers at no charge. But what about smaller banks and credit unions? The credit union I patronize in Colorado would not know how to go about arranging to have my statements Brailled, and since, for me, this is not a big issue, I have never raised the question. But what about blind customers who, through no fault of their own, cannot find, download, let alone read electronic versions of a bank statement—even a statement that is fully accessible? What if navigating complicated web pages, finding and downloading specific files, and managing usernames and passwords are tasks which are beyond their ability? If these customers go to their banks and ask for statements in Braille and are then denied, what should they do? Does the law require banks to provide Braille statements to customers who ask for them? If there is a legal requirement to provide Braille statements, how long would it take a person to go through the judicial process?

Today, technology and services are available to produce bank statements in Braille. Banks can contract with third-party organizations to convert what is already an electronic document into hard copy Braille, and the process of conversion does not take as much time as it would if the statement had to be transcribed by hand. Gone are the days when financial institutions had to send out printed versions of their statements to be copied by hand.

According to my favorite search engine, at least two companies claim to produce Braille bank statements. Banks who are willing to provide Braille statements can simply enter into an agreement with one of these companies and provide them with electronic copies of monthly statements to be converted into hardcopy Braille. Thus, it would seem to be a relatively simple and cost-effective matter for individual banks to provide Braille statements to their customers.
To reiterate my question from above, can a bank maintain that, because it provides accessible electronic statements, there is no legal reason for it to provide Braille statements? While I personally believe that we should stand on our right to obtain and receive a Braille statement from our bank, I believe that the legal process would be so time-consuming that in the end, the victory would hardly be worth the effort. We could take this issue to the legal limit, but how much time will have passed before victory is achieved?

Then there is this: When is it incumbent upon us to increase our technological competence to deal with an unstoppable reality, which is that, like it or not, our world is forcing everyone to bone up on technology or risk being relegated to the backwaters of society? In this vain, I submit that too many blind people are the victims of inadequate if not incompetent technology training. This is made even worse by insufficient funding for training programs for the blind and less-than-adequate training of the people who actually teach technology. Historically, blind people who are experts in the teaching, support, and use of nonvisual access technology have learned the hard way, by teaching themselves. I have not yet met a blind person who learned how to teach or support nonvisual access technology by attending a formalized training program. So, while the need to master our technology is greater than ever, there simply aren’t enough good training programs and trainers to meet this need.

Most blind people who really want Braille bank statements will probably move their funds to a financial institution that routinely provides them. Those of us who can will avoid the Braille question, download electronic statements from our banks’ websites, and complain only if the websites or the statements are not accessible to us with our nonvisual access technology.
If anyone reading this article understands the law better than I do, please let me know if, in fact, Braille bank statements are something which the law requires banks and other financial institutions to provide. I would love to hear from you. I can be reached by email at [email protected].

Federationists Continue to Express Our Commitment in Song: “My Vote” (“My Shot” Parody Lyrics)

by Precious Perez

I am not throwing away my vote!
I am not throwing away my vote!
Hey yo, I live in this country, I got a civic duty,
and I'm not throwing away my vote!
I'm a blind American who’s in college,
gettin' an education, and dang, they're amazed and astonished.
The problem is society thinks that we can't accomplish
things like gettin' a job,
and earning equal pay as blind people.
I'm a Federationist,
That's what you need to know.
Tryin' to reach my goal. My powerful vote is undeniable.
Only eighty years, but our country's older,
these US policies get bolder,
we shoulder
ev'ry burden, ev'ry disadvantage,
we have learned to manage,
but we’re not alone in all this,
trabajamos todos juntos.*
The plan is to turn this spark into a flame,
So let me tell you how to exercise your right today.
Just go to nfb.org/vote, wherever you may be.
Equality, fight for voting independently,
we have the right to participate in democracy.
Essentially, we are a minority.
We have the power to shape the future with advocacy,
we ain't never gonna see the change in policy,
unless we stand up on election day and make 'em see.
That we are not throwing away our vote,
we are not throwing away our vote.
Hey yo, we live in this country
we got a civic duty,
and we’re not throwing away our vote!
And we’re not throwing away our vote!
We are not throwing away my vote.
Hey yo, we live in this country
we got a civic duty,
and we're not throwing away our vote!
Es hora de votar.**

Editorʼs Note: Our best translation:
* We all work together.
** It is time (now) to vote.


Recipes this month were contributed by members of the National Federation of the Blind of Oregon.

Portland Central Chapter’s Favorite Black Bean Crockpot Soup
by Tracy Boyd

Tracy is a member of our NFB-OR Board of Directors and is the president of our parent’s division. She has been both a state and national scholarship winner and is very active in the Portland Central Chapter of the NFB of Oregon.

1 bag of black beans (soak overnight in water) drain beans completely before adding to crockpot.
1 jar of medium salsa
2 boxes of vegetable stock
1 teaspoon chili powder
1 teaspoon onion powder
1 teaspoon cumin

Method: Add all ingredients into crockpot; cook on high for four hours; blend with immersion blender until soup is creamy. Serve with your favorite toppings. Here are some of Portland Central Chapter’s favorite toppings: sour cream, shredded cheddar cheese, chopped onions, chopped red peppers, and lime wedges.

Chicken Soup
by Katie Taylor

1 chicken breast, boneless and skinless
1/4 cup barley, optional
1 or 2 zucchinis
1/4 bag of frozen cauliflower
1/4 bag of pearl onions or 1/4 of any standard onion. Either red, yellow, or white. Do not use green.
1 can green beans, carrots, or peas, or any combination of these
Either potatoes peeled and rinsed, or pasta, or frozen egg noodles
Use any spice or salt you have for seasoning
Garlic or onion powder
Use either a creamy Campbell soup or bullion for the broth

Method: First dice all fresh ingredients. Make your broth; set aside. Place all fresh ingredients in a crock pot or large slow cooker. Add frozen vegetables as these will cook through during the cooking process. Add all of the broth (keep in mind the size of your slow cooker or large pot if you wish to make this recipe on the stove; too much fluid will cause a spill.) After three hours of cooking, or when all fresh ingredients are cooked through, add canned vegetables to warm them (drain vegetables first). When adding fresh ingredients, be sure to include the barley or any fresh herbs you may use. Servings depend on size of pot or slow cooker. A small crock pot will yield about five servings of soup. When choosing fresh vegetables for this recipe, do not use broccoli or cabbage.

Monitor Miniatures

News from the Federation Family

Freedom Scientific Offers Generous Matching Gift Opportunity:

The National Federation of the Blind is grateful for the generous matching gift from Freedom Scientific in honor of Meet the Blind Month this October. Freedom Scientific, a Vispero brand and the maker of JAWS for Windows and Focus Braille displays, has pledged to match the first $50,000 in donations made to the NFB during Meet the Blind Month.

Double your contribution and help ensure that we fulfill this matching gift!

Three Ways to Give

This year our Meet the Blind Month activities are focusing on lived experiences in our local communities with problem-solving and self-confidence. Thank you to Freedom Scientific and all of our supporters for helping us continue this important work.

Watch and share the announcement video from President Mark Riccobono and Tom Tiernan, president & CEO of Vispero. Thank you for your support!

Federationist Receives Award:

Linda Melendez shares this with Monitor readers: I am proud to share the news that our fearless leader and NFBNJ President, Joseph Ruffalo, has been awarded the New Jersey 2020 Lydia Young Hayes Trailblazer Award. This award is given every ten years to outstanding New Jersey CBVI stakeholders and consumers who are selected by a committee after its review of the many nominations received.

His award will be presented during the New Jersey Commission for the Blind and Visually Impaired virtual eleventh anniversary celebration at 3 p.m. on Friday, October 2, 2020.
Thank you to the affiliate board members who shared their personal and professional reasons why Joe should receive this award. A special thank you to Annemarie Cooke, who chairs the NFBNJ Communications Committee for gathering these facts to support Joe’s nomination.

It was my honor and privilege as the first vice president to submit this nomination on behalf of our membership. I am thrilled the nominating committee recognized the many contributions Joe has made to the blind community.

Congratulations Joe! You deserve this honor, and we love you dearly! Your tireless contributions to the NFB, NFBNJ, and Jersey residents for over three decades is much appreciated. You have made it respectable to be blind and empowered us to live the lives we want because You Care, You Share, You Help Us to Grow, and You Make a Difference!

Santa Loves Blind People, and Santa Loves Braille: 

Santa Claus has made the staff at the National Federation of the Blind Jernigan Institute honorary elves. He has asked us to help him send letters in Braille to very young blind boys and girls (those under the age of ten) in the United States. Between November 9 and December 16, parents can go online at www.nfb.org/santa-letters and fill out a Santa Braille Letter request form. The form can also be printed and faxed to (410) 685-2340 or emailed to [email protected]. Beginning Monday, November 30, the Braille letters from Santa will start going out to boys and girls around the country. The Braille letter will also be accompanied by a print copy (for mom and dad to read) as well as some other fun Christmastime activities.

The deadline for letter requests is December 16, to ensure that a return letter in Braille is received before Christmas. For more information please visit our website at www.nfb.org

A Meeting for Blind Stutterers: 

I did not watch either the Democratic nor Republican Party National Conventions this past August, but I did make it a point to go on YouTube and watch the video of Brayden Harrington, the thirteen-year-old New Hampshire boy who did not let his stuttering prevent him from speaking to an audience of millions during the Democratic National Convention. Though I am fairly fluent now to the extent that I make my living working in a call site, I still struggle with stuttering.

If you are blind and stutter, or if someone in your affiliate or chapter is blind and stutters, I want you to contact me. My name is Daniel Garcia, and I am currently the chair of the NFB of Missouri’s Personal and Career Development Group, the aim of which is to encourage people to find employment and develop their careers through personal growth strategies. I would like to have a meeting where blind stutterers feel safe and can discuss how they manage their stuttering and whether the twin challenges of blindness and stuttering has affected their employment prospects.

If you are interested in participating in this meeting, you can leave me a voicemail at 816-621-0902, or you can send me an email message at [email protected].


At its 2020 annual convention, the National Federation of the Blind of South Carolina elected the following officers and board members: president, Jennifer Bazer; first vice president, Lenora Robertson; second vice president, Debra Canty; secretary, Shannon Cook; treasurer, Valerie Warrington; second district representative, Steve Cook; fourth district representative, JW Smith; sixth district representative, Marty McKenzie; member-at-large seat one, Demetrius Williford; and member-at-large seat two, Neal Sheth. All the best to the new board and the work that lies ahead.

NAMA Announces 2020 Industry Person of the Year
Nicky Gacos, Owner, Colorado Café Associates:

Nicky Gacos is the president of the National Association of Blind Merchants. He was recently recognized by the preeminent organization in food services. Here is what they said: According to the award nomination, “Nicky has, through his career, exemplified the very best of what American industry has shown the world: that the private sector can both reward the deserving individuals who risk their capital and deploy their hard work and ingenuity, and also serve the public good. No previous NAMA award recipient embodies this dual essential achievement more than Nicky, who has fostered partnerships across the industry and—critically—brought great talent into our industry from outside, while helping budding entrepreneurs earn business success and financial independence.”

In 1992 Nicky began his career as a vending operator with just one location. Since that time, he has been a tireless advocate on behalf of the entire industry, including Randolph-Sheppard entrepreneurs. In 2015 Nicky was elected to serve as a member of the Board of Directors of NAMA, the first blind person to have this distinction.

Nicky has served as the president of the National Association of Blind Merchants, a division of the National Federation of the Blind, for ten years. In this role he has spearheaded numerous annual multi-day leadership conferences attracting hundreds of Randolph-Sheppard entrepreneurs each year. He is past chair of the Middlesex County (New Jersey) Workforce Investment Board and member of the New Jersey’s State Employment and Training Commission. He serves as a board member for NAMA, as well as the Tri-State Automatic Merchandising Council, and is a member of both NAMA’s Government Affairs and Industry Communications Committees. In 2015 he was named a NAMA Advocacy Award winner.

About the Awards

A NAMA tradition, these awards recognize individuals who have served the industry and NAMA as leaders, innovators, and advocates. This year on July 9, winners will be acknowledged in a virtual celebration, including a video highlighting the vast achievements of each of the award winners.

The NAMA Industry Awards are presented to individuals that best exemplify support of the convenience services industry through a history of service and leadership throughout the industry and in their own communities. They must be innovative, possess a willingness to expand conventional practices, and follow ethical business standards in accordance with the NAMA code of ethics.

Founded in 1936, NAMA is the association representing the $26 billion US convenience services industry. With more than 1,000-member companies—including many of the world’s most recognized brands—NAMA provides advocacy, education, and research for its membership. Visit NAMA on Facebook, Twitter, and LinkedIn.

NFB 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 policies and programs of the Federation; and to abide by its constitution.