Vol. 64, No. 10 November 2021
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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THE NATIONAL FEDERATION OF THE BLIND KNOWS THAT BLINDNESS IS NOT THE CHARACTERISTIC THAT DEFINES YOU OR YOUR FUTURE. EVERY DAY WE RAISE THE EXPECTATIONS OF BLIND PEOPLE, BECAUSE LOW EXPECTATIONS CREATE OBSTACLES BETWEEN BLIND PEOPLE AND OUR DREAMS. YOU CAN LIVE THE LIFE YOU WANT; BLINDNESS IS NOT WHAT HOLDS YOU BACK. THE NATIONAL FEDERATION OF THE BLIND IS NOT AN ORGANIZATION SPEAKING FOR THE BLIND--IT IS THE BLIND SPEAKING FOR OURSELVES.
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Vol. 64, No. 10 November 2021
Illustration: Raising the Bar, Expanding the Possibilities
NY Reaches Agreement with DOJ Over Vaccine Access for Blind People
by Lauren Weber and Hannah Recht
We are Federationists Too
Stronger Together: How the Organized Blind Movement Benefits from the Global Advancement of the United Nations CRPD
by Gerard Quinn
2022 Washington Seminar
Sleep in Blind Children, a Mystery
by Carla Keirns
Want to Get the Most out of Social Security: Being Blind Can Help, but There's More to the Story
by Marc Maurer, Susan Gashel, and James Gashel
You’ve Got Mail, but it May be Late
by Kyle Walls
Celebrate the Holiday Heroes Who Are Leading the National Federation of the Blind
by Patti Chang
What One Determined, Motivated, and Caring Woman can Achieve: The Life of Doris Willoughby (HTML)
by Ramona Walhof
You Can Make a Difference
Independence Market Corner
by Terry Boone
Accessibility Tour through the National Peace and Justice Museum Memorial
by Lisa Bryant
Copyright 2021 by the National Federation of the Blind
The National Federation of the Blind is all about increasing expectations. This takes two forms. One is doing away with the faint praise we so often get for the smallest things that are made to appear miraculous. But the second is actually to get us to do things that we thought foolish or even impossible. Usually these are referred to as challenge activities, and it is at our three NFB training centers that these often take place and end up being the activity that changes one’s perception about blindness.
But our training centers have no exclusive hold on challenge activities. They also take place at 200 East Wells Street, the home of our Jernigan Institute. During a recent visit by the National Federation of the Blind of Wisconsin, President Riccobono showed our fellow Federationists how to safely and confidently use a chainsaw. As many come to conclude, all using different words, this kind of experience causes me to reflect on what I once thought of as the reasonable or the possible, but I now question what I once knew as limits and am open to all kinds of experiences. Blindness is not what holds me back.
[PHOTO/CAPTION: With the help of President Riccobono, Dean Charlier eases the chainsaw through the log.
[PHOTO/CAPTION: Nikki Wolf bends over and pulls the start cord of the chainsaw. President Riccobono holds the chainsaw steady on the ground for her.
[PHOTO/CAPTION: NFB staff member, Danielle McCann is halfway through the log with the chainsaw. President Riccobono helps from the side.
by Lauren Weber and Hannah Recht
OCTOBER 8, 2021
10/8/21, 8:47 AM
From the Editor: The following is reprinted with the kind permission of Kaiser Health News. KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.
When Bryan Bashin of Alameda County, California, tried on Feb. 9 to sign up for his vaccine appointment, he found the website was inaccessible. Bashin is blind and the CEO of the LightHouse for the Blind and Visually Impaired in San Francisco. (SHELBY KNOWLES FOR KHN)
Five New York state and local government agencies agreed to fix COVID-19 vaccine websites to make them accessible for blind users following a Department of Justice investigation spurred by a KHN story. New York State’s Department of Health, the City of New York’s Department of Health, New York City Health and Hospitals Corp., Nassau County and Suffolk County entered into written agreements with the US Attorney’s Office for the Eastern District of New York, saying they have corrected issues that prevent blind or visually impaired users from accessing forms or navigating vaccine websites. In the agreements announced Tuesday, they pledged to maintain accessibility on those sites.
KHN’s February investigation detailed how COVID vaccination registration and information websites at the federal, state, and local levels violated disability rights laws and hindered the ability of blind people to sign up for the potentially lifesaving vaccines. The investigation was cited in a March letter sent to the Departments of Justice and Health and Human Services from several senators, including Senator Maggie Hassan (D-N.H.), who also asked HHS and Centers for Disease Control and Prevention leadership about the issue in a congressional hearing. The Department of Justice issued a memo the next month highlighting that “civil rights protections and responsibilities still apply” for those with vision disabilities, and HHS did as well.
In response to the KHN investigation, the Department of Justice reached out to WebAIM, according to the group’s associate director, Jared Smith. WebAIM, a nonprofit web accessibility organization, ran an analysis at KHN’s request that found accessibility issues on nearly all 50 states’ vaccine websites, which provide general vaccine information, lists of vaccine providers and registration forms. WebAIM then helped the US attorney’s office in its investigation, Smith said.
Clark Rachfal, director of advocacy for the American Council of the Blind, said the public agreements are vital as they put “other jurisdictions on notice that this is a violation of the civil rights of people with disabilities.” Sachin Dev Pavithran, executive director of the US Access Board, an independent agency of the federal government that works to increase accessibility, said he knew the department had investigations in progress in other states. Inaccessibility for government websites is unlawful under the Rehabilitation Act of 1973 and the 1990 Americans with Disabilities Act, said Albert Elia, a blind attorney who works with the San Francisco-based TRE Legal Practice on accessibility cases. He hopes the pandemic has shown just how vital online accessibility can be as so many people shifted to ordering their groceries, clothes, and even medicine online.
“The notion that it’s fine if online things are inaccessible—I hope we’re beyond that now,” he said. “I hope the general public realizes that to cut people out of online access is effectively cutting them out of life.” The National Federation of the Blind settled this summer with Curative, a startup that has administered COVID vaccines and tests in cities across the country. Curative admitted no wrongdoing but agreed to make its website accessible within thirty days and pay NFB’s attorney fees, plus donate $2,500.
One blind California resident, Bryan Bashin, who was unable to use Curative to register for his vaccine appointment online, was featured in the KHN investigation. “We hear a lot of lip service about inclusion and respect for diversity,” he said Thursday. “Respect for our diversity begins with intelligently designing these processes.”
Andy Imparato, a member of the White House’s COVID-19 Health Equity Task Force and executive director of Disability Rights California, said he expects a report on inequities from the task force to be given to President Joe Biden within the month. He said the report will likely call for an outside evaluation of access issues in the COVID response, including website accessibility.
“The story that published had an impact across the country,” Imparato said. “It was very specific, it was very detailed, and it was hard to ignore. I think it was incredibly helpful.”
The National Federation of the Blind is pushing for a legislative fix to codify online accessibility rights, but Rachfal said a fix can be done without Congress. “What’s needed is some leadership from the administration and the Department of Justice to promulgate regulations that they already have the authority to do,” Rachfal said.
From the Editor: Seldom do we publish articles anonymously. When we do, it is at the request of the author, but never are we unclear about the source of the article or the authenticity of what is said. In this case we publish an article from a survivor. The Braille Monitor wishes to let her say what she wishes on her own terms and to show her the kind of respect she has every right to expect as a Federationist. Here is what she says:
Content warning: This article mentions instances of abuse and sexual misconduct. If you or someone you know has experienced sexual violence, you are not alone. The National Sexual Assault Hotline offers free, confidential support, 24/7, at 1-800-656-HOPE (4673) or at online.rainn.org.
I am a Federationist too! I am also a two-time survivor of sexual assault at an NFB-sponsored event. In December my stories were shared publicly without my consent, which I'm sure you can imagine has led to personal pain and anxiety. That sharing did not come from the NFB, and the telling of my stories without my consent isn't made better by the argument that it was for a noble motive or to serve a higher purpose.
To clear the air, and because I know there will be many who are wondering, in both situations in which I was involved, there was no alcohol consumption on my part. In both situations there were a number of public witnesses, bystanders who knew exactly what was going on but who did nothing.
As I write, I can almost hear pages turning as some will say they want to skip on because they are only interested in blindness issues. "What does this have to do with blindness?" There are so many issues we need to be fighting. “Why aren't we tackling them instead of focusing on these distracting topics?"
While I do not presume to speak for all survivors given there are a number of diverse opinions on where things stand and how to move forward, there is one thing we all have in common: we are Federationist too! We ache for independence and good training in blindness skills. We want to fight for appliances that are accessible to the blind. We want equal access in both primary and secondary education. We want equal opportunity employment to truly mean equal opportunity. We feel the threat when, like you, we realize that most states in our country can remove our children based on ill-informed people in positions of authority who refuse to educate themselves on the way the blind care for children.
Here's the problem in seeking to focus only on blindness: if people don't feel safe, they can't concentrate on the issues that unite us. If they don't feel heard, they can't be a part of crafting our future.
Just as the car in the blind driver challenge can't run with a flat tire or an overheating engine, we can't ignore important problems in the name of staying true to the race. The reality is that both the overheating and flat tire represent symbolic issues that have become nationally recognized within the last few months. Instead of turning our heads, we need to attack these issues head on, including at the state and local level. The alternative is to keep bleeding members, losing them through attrition because they think we don't care. This should be unacceptable to all of us: they need us, we need them, and we are all the better for solving the problems that push or keep good people away.
The reality is that one of the most effective ways of building our membership is to attack head on the elephant of sexual misconduct that has been in the room since the founding of the organization. We should not be surprised by this statement, for if blind people really represent a cross-section of our society, then what affects America affects we who are blind and the organizations we form and support. Rape and sexual assault are one of the most abhorrent behaviors in our society, and two out of three sexual assaults go unreported each year. No one can be unmoved by this statistic or the behaviors it quantifies, but the difficulty is when we are forced to look at people we know and love and must recognize they have been a part of this problem.
If there is one thing I observed from the 2021 Convention, it is that no leader is indispensable. Acknowledging the significant ideas, contributions, and expertise that perpetrators have brought to our movement in no way excuses their behavior, nor can it be used as a reason to sweep what they have done under the rug. If our leaders and our members are serious about making this organization safe, they must allow for a messy and transparent examination at every level. Fixing a car is messy. Mechanics reek of oil; sometimes the car has to be taken apart piece by piece and then put back together.
Supporting victims means that all leaders and members need to be unified in exposing mistakes made at every level, doing our best to prevent them from happening, and pledging ourselves to reveal them when they occur. The support and transparency NFB leaders have demonstrated over the last few months must continue. Their work must continue in our affiliates and in our chapters because the problem isn't just something that happens nationally. For those tempted to say that all of this happens somewhere else, I plead with you: Instead of dismissing survivors in your midst as naysayers, let us all address and improve on how well code of conduct complaints are processed, both physically and emotionally. The next time you are at an NFB event, look to your left and to your right. I guarantee someone near you is a survivor. Please don't dismiss us just because taking us seriously is uncomfortable. Treat us with kindness, the very kindness you want shown to you.
I know there is much impatience on the part of survivors, a fear that nothing will change. As difficult as it is, we need to recognize that being thorough takes time, and the more critical the issue, the more important it is that we do it right. As survivors, we need to decide whether we want the car repaired quickly, focusing only on the cosmetic, or that we want the car repaired thoroughly and competently so that it is the vehicle for change we can all drive with pride toward our destination of equality.
I have been a Federationist since 2004, and never in my eighteen years as a member have I seen such rampant and disdainful attacks against the core of what the NFB is. For us to demand change leading to a safer NFB is reasonable. Whether or not these attacks are merited, for us to allow everything for which the NFB stands and all the good it has done to be attacked serves no one and should not happen in the name of helping survivors.
The one unified belief we survivors hold is the need for continuous transparency. This means transparency after the final code of conduct report has been filed. This means choosing transparency over simply saying "We can only imagine how difficult this must be to wait on change, but we assure you this is still at the forefront of our minds and our organizational agenda." Transparency means continuing an open dialogue of concerns and ideas with survivors. A commitment to survivors does not come at the cost of the organization but is the very thing that builds and strengthens it.
To my fellow survivors, I say: Don't give up. Hold onto why you became part of the NFB in the first place. I believe wholeheartedly that only through collective action will code of conduct complaints as well as blindness issues ever change. I have heard the suggestion that we survivors should go and form a new organization, but why reinvent the wheel? Do not lose sight of where we would be as blind Americans without the National Federation of the Blind and its tireless efforts for legislation, the enforcement of civil rights, and the life-changing philosophy that has caused many of us to dream and then to live those dreams. To say that our leaders are not listening is to paint them with a broad stroke and to ignore those national and state leaders who do care and are tirelessly working on a safer Federation for us all. I personally have not heard anyone deny that sometimes cataclysmic mistakes have been made. All members and leaders are fallible. Only through continuous dialogue and sometimes changes made through elections will we be able to create an environment of safety and security for all.
Before you think about walking away, consider what we have and what we risk losing. Education and rehabilitation require advocacy by committed and experienced women and men who are deeply invested in our wellbeing and their own. In today's environment, how safe do you feel our programs and services will remain without the commitment and experience our organization has taken eighty years to cultivate? What we have built has taken time and energy we cannot afford to waste. Let us look clearly at our imperfections and address them. We know how to bring about external changes, and I believe we can bring the same focus, perspective, and success to addressing what ails us internally.Lastly, I want to say this to survivors: I'm so sorry: I'm sorry for your pain and frustration. I'm sorry for your shame. I'm sorry you were ignored. I'm sorry for your anger. I'm sorry that your ability to improve your own world has been dramatically changed by the actions of someone else. I'm sorry, and I believe you.
by Gerard Quinn
From the Editor: Mr. Quinn is the United Nations Special Rapporteur on the Rights of Persons with Disabilities. He made his presentation before the 2021 Convention from his home in Ireland, and his perspectives on how the world looks to us for civil rights advancement is both encouraging the sobering. He reveals our potential for good and the consequences when we fail to lead in areas in which we have traditionally been pioneers.
The treaty of which he speaks was written by the United Nations Committee on the Rights of Persons with Disabilities and is properly called the Convention on the Rights of Persons with Disabilities (CRPD). Although the NFB has pressed for its passage since 2009, it has not yet been passed by the U.S. Senate. Here is what he says:
Gerard Quinn: President Riccobono, thank you for the high honor of addressing you and your colleagues today. I'm calling you from my home in the west of Ireland, with many, many links to the United States, and we always intuit that we are always stronger together as we look across the ocean. I was very moved by Reverend Frye's invocation that we should reach out and try to impact the world, and my talk very much follows in his spirit.
I’ve often said that the UN treaty without the United States is like Hamlet without the prince. They're such a natural fit. I think there's so much you could do with it and so much we could do with you being present in it. President Riccobono, nearly all the issues you mentioned in your wonderful speech resonate very strongly with the jurisprudence of the UN Disability Treaty. As Secretary Buttigieg said, people want to belong to the economy, to society, and to their culture, and we all need them to belong. Even disability treaties are an incredibly powerful instrument in leveraging change to make sure that happens.
In the brief time available, I just want to do three things, and I will not descend into legalities or niceties. First of all I want to talk a little bit about the background to the treaty. As you yourself mentioned, it's one of the most widely ratified treaties in the world. One hundred and eighty-two countries from every single corner of the world have now ratified, including your neighbor up north, Canada, and your neighbor down south, Mexico. So I want to just briefly describe what the treaty mechanism is, what kind of implementation and monitoring mechanism is available under the treaty. It's important to understand that it does not exist in isolation. It's part of a number of global mechanisms. But it's at the heart of those global mechanisms. So really, if you want to have an impact around the world, you have to be part of the CRPD, influencing all those other global mechanisms.
Secondly, and very briefly, I just want to highlight some of the substantive innovations in the treaty that are generally applicable to all persons with disabilities, and even intersectionally available to, for example, older people with disabilities, women and children, etc. And there are some provisions in the treaty that have a special relevance to citizens with visual impairments, and I'll explain momentarily.
Thirdly, I just want to anticipate the future a little bit and maybe pose the question, why join? Why ratify? What's in it for you? And I think there are some tangible benefits in it for you. And how can you use it for the benefit of others around the world?
First things first. The interesting thing about the drafting of the treaty is that there were draft versions available in the 1980s, just as you were considering drafting the Americans with Disabilities Act. In fact, Sweden and Italy produced drafts in the mid-1980s. The Swedish draft was produced by Bengt Lindqvist, a very, very famous blind lawyer in Sweden at the time. It didn't go anywhere at the time, but it set the table for what was going to happen in the next ten or fifteen years.
When we began drafting the treaty, we widely assumed—everybody assumed—it would be like the Americans with Disabilities Act, an equal opportunities treaty. But instead of being confined to the US, or the UK, or Australia, or Canada, it would be projected out onto a global level. But something really interesting happened in drafting the treaty. A lot of the disability groups were present, and part of the richness of the treaty is due to their presence during the negotiations. They said, “Hang on a minute. The reason why we need these elaborate equality protections is because you're not treating us seriously as persons.” And that's why there are some fascinating, innovative provisions on the convention on personhood, on your autonomy, on your right to be yourself, as the slogan for your organization goes, the right to live your life your way.
Of course that morphs into other things, like the right to live independently and the right to have your voice heard individually as well as collectively. Many people say, and I say, this is actually the heart of the Convention—revealing the person behind the mask, so to speak, and getting others to treat the personhood seriously.
The second interesting thing that happened is we took the equality theory embedded in the ADA and in UK legislation and Canadian legislation, and then broadened it and deepened it. I'll talk momentarily about that, because it's very important and applies throughout the Convention.
By the way, the Convention mingles or comingles civil and political rights like the right to vote, inclusive education, the right to protection from violence and exploitation, with economic, social, and cultural rights: the right to education and access to health and so forth.
Importantly to note, where this doesn't exist in a country, it doesn't necessarily force it to exist, but it helps to shape it where it does exist, to make sure that if you have an elaborate Social Security system that it genuinely supports people and does not entrap them and so forth. We could get into some niceties and some technicalities here, but I'll try to avoid that for the moment. Also very important, the US had a leadership role in this, but maybe others have now taken that leadership role. The treaty applies both to your domestic policy and to your foreign policy. That would include your development assistance programs around the world. If you can't build inclusive schools in the United States, you certainly should not be using taxpayers' dollars to build non-inclusive schools in Africa and so forth.
The EU Disability Strategy just published two months ago now has a whole section on the European Union in the world, that is to say, based on the UN Disability Treaty, helping other countries to meet standards of the UN Disability Treaty. So the European Union is in the process of becoming a preeminent champion of disability rights worldwide. Personally, I would love to see an alliance between the European Union and the United States in this regard, maybe a new transatlantic alliance.
Here is a very important note in the history of the drafting of the treaty: the World Federation of the Blind, led by Kicki Nordstrom from Sweden, and the World Federation of the Deaf, were present and very active during the drafting of the Convention, and they managed to ensure that some of the articles, for example dealing with the inclusive education took specific account of the learning needs of blind students as well as deaf students as well as deaf-blind students. They also collaborated in drafting Article Nine of the Right to Accessibility. This is not in any other UN treaty. This is specific to this particular treaty and is very important. In fact, there was a complaint already—an individual complaint to the UN treaty body on inaccessible ATM machines in Spain—and the complaint was won. It's in process under what's called an optional protocol. So if the US ratifies the treaty, it also has the option of opting into the complaints mechanism if it wants to do so, and about two-thirds of the countries that have ratified the Convention have in fact done so.
So, what are the treaty mechanisms? I think it's very important to distinguish between international-level treaty mechanisms and domestic treaty mechanisms. At the international level, there is now what's called a UN Committee on the Rights of Persons with Disabilities. What it does sounds pretty boring, but it's actually pretty important. It assesses government reports; every four years your government comes forward with a comprehensive report, and it arrives at conclusions and recommendations to the government based on that report. If your government has opted into the optional protocol, it can additionally receive complaints from individuals and groups.
Because you have not ratified the treaty, you cannot nominate somebody to sit on this body, and that's very unfortunate—I would have thought—nor do you get a chance to vote for who gets to be elected on that committee. So far, there have been some very eminent blind lawyers and other blind activists on the committee, and in fact the very first chair is a very eminent blind lawyer from Sydney in Australia, Ron McCallum. The point is the US, because it hasn't ratified, is not allowed to nominate its own member and therefore lacks influence over the direction of the committee and isn't even allowed to vote for others who are being put forward by the states themselves.
That's just one layer. Another layer is what's called a conference of states parties. This is where all 182 states that have ratified the treaty meet once a year for an extended period for global conversations on challenges and more importantly on solutions—sharing solutions with each other. Again, unfortunately, you cannot be part of that, or at least a formal part of it, unless and until you ratify. That's probably the single most important global platform for conversations on disability law and policy.
I won't belabor you with most of the other detail, but just be aware that the UN specialized agencies, for example, UNESCO (the ILO—you were mentioning issues about remuneration—the ILO is very engaged on other bodies such as the World Intellectual Property Organization) are all now influenced by the CRPD. In fact, there is a UN Disability Inclusion Strategy, only put together two years ago, exclusively driven by the UN CRPD or disability treaty. The US, of course, is a member of these specialized agencies, but the agenda is not set there. It's set by the UN Disability Treaty. Again, I think you're kind of missing out on the center of gravity in global conversations.
Also, there are annual discussions in the UN General Assembly and the UN Human Rights Council on disability issues, where other countries like Canada, New Zealand, and Mexico now take the lead. I won't go into my role, which is rather detailed, but I will say that I do put a spotlight on challenging issues and produce two reports a year. The first is going to be on war, conflicts, peace building, and disability, and the second one is actually going to be on artificial intelligence—the risks as well as some of the opportunities into the future. So the international layer is quite complex, but I think it can be crunched down into the treaty body—the confluence of states parties that meet once a year—and then the other agencies of the UN system.
Just as important, the treaty imagines that there will be a domestic institutional architecture to drive change. This is very unusual. Other treaties don't do this. The drafters of the disability treaty said, "Ha, we kind of have stuff out there in the pure ether of international law, but unless there's a way of owning it domestically, it's not actually going to drive change." That's why the treaty requires states that ratify it to have in place a clear focal point within government to drive change, a right to be consulted among civil society with government—we call this the co-production of policy into the future between power and voice, and those ideas are the input of third parties like your US Civil Rights Commission, National Council on Disability, and so forth. So the image here is a triangular image for change between power and government, voice and civil society, and the power of ideas driving imaginative blueprints for change. That's one of the key drivers for change around the world, and where it's working well, you know that that golden triangle has actually kicked in. So it's like, as it were, the vehicle for internalizing the values of the Convention.
What about some of the substantive elevations? I'll be very brief here. I mentioned personhood and the anchoring of the Convention on personhood. Let me say that that ripples out into all kinds of interesting policy domains and challenges. One of them has to apply, for example, to the future of mental health policy and the trend now that's very pronounced internationally toward non-coercive models for mental health. The World Health Organization (WHO) just two weeks ago published an amazing compendium of good practice from around the world away from traditional civil commitment ideals. That really is kind of personhood ideas coming to life in that particular domain.
I mentioned equality too, and of course, the Convention is very much beholden to an equality theory or vision. But, and here's the important but, it's broader and deeper than the equality idea, as found in the British disability discrimination legislation, in the Australian legislation, or in the American legislation. The UN treaty body has adopted what it calls a theory of inclusive equality. This resonates with what Secretary Buttigieg was saying early on. So it's not just about measuring relativities of treatment between me and somebody else. It's much deeper than that. The committee says it's based primarily on recognition of you as a person. It's based on accommodation of the difference of disability and the recognition of accumulated disadvantages from the past. It's also based on notions of a diversity of disability.
Last but not least—very interesting for us in Europe, maybe slightly less for you in the United States—it also has to do with the need to reengineer social supports to make sure that they liberate and do not entrap people into the future. That's a huge challenge for us in Europe. I can't speak to the United States.
So the personhood stuff is important, the equality stuff is important. That applies across the board to all of the substantive rights like political participation. There's an image of active citizenship, participation, and inclusion in the Convention that cuts through everything. The right to accessibility was added in Article 9, and one of the very first things the UN treaty body did was produce an extensive commentary on what Article 9 means, particularly in the context of the electronic environment. As I say, some of the complaints that have gone to the committee have dealt with this.
I'm sure you're aware of the Marrakesh Treaty in the NFB. The interesting thing to note is that the Marrakesh Treaty, which relaxes copyright in favor of blind readers, would not exist without the CRPD. The CRPD created the spur for the drafting of the Marrakesh Treaty. You in the United States have at least signed Marrakesh—I'm not sure if you ratified—but Marrakesh is an offspring of the CRPD. It's not the mothership itself; the mothership itself is actually the CRPD.
So what about the future? I'll stop here for the sake of time. We have a saying here in my country: If you're not in, you can't win. So you're not really at the heartbeat of changes internationally unless you're formally a part of the actual Convention itself. So the question you really should be asking now is, is it worth it going again back to the Senate, and if so, what arguments or strategies should be used? I'm an outsider, but I have observed your process in recent years. I think the argument used last time around for ratification didn't work. It was based on the supposition that the treaty affirms everything in US law and that the treaty helps project the ADA onto the international sphere, giving Americans the same rights abroad as at home. Well, those arguments clearly didn't work. I would personally say that the CRPD builds on and then complements existing US law. It doesn't break it; it's like the ADA second generation. It just extends its imaginative horizons. A treaty, any treaty, is an act of sovereignty. It's not a time bomb to override sovereignty, and even if there was something ugly that eventuated in the future from it, you can still exercise your sovereign rights to withdraw from the treaty in the future, although I wouldn't like to see that happen. All states enter into treaties in good faith. We call that pacta sunt servanda. It doesn't override national sovereignty; it informs it, and it can inform domestic courts. They're not obliged to follow it, but if they are persuaded by the logic, perhaps they will take it into account. Essentially, therefore the treaty allows you to formally enter a global conversation about what personhood, equality, and inclusion mean in the context of disability rights around the world. The US has a lot of value to offer, but it simply cannot join that global conversation at present.The way I put it in an essay after the last time I spoke before the NFB was by saying that the treaty creates a new politics of disability. It sparks advocacy for change where none has previously existed in all sorts of corners of the world, and it helps widen advocacy for change at home, whether it's in my country or in your country or in Germany or in France. Thank you so much, Mr. President. I look forward to interaction.
It may seem like we just finished with the National Convention, but we’re already looking over the horizon into next year and the first major Federation event of 2022. Of course we’re talking about the 2022 Washington Seminar, which will run from February 7 through February 10.
As is traditional, we will officially kick things off with the Great Gathering-In on Monday, February 7 at 5:00 p.m. Eastern. All attendees of the Washington Seminar are strongly encouraged to attend this event where they will learn about our legislative priorities for the year and be inspired to advocate for them in their individual meetings with members of Congress.
After you’ve been educated and inspired at the Great Gathering-In, be sure to get a long and restful night’s sleep, because on Tuesday, February 8 we start advocating. Meetings with members of Congress will begin on Tuesday, and they won’t stop until Thursday, February 10. In these meetings, you will take everything that you learned on Monday and use it to get your elected officials in Washington to support our causes. This is a great opportunity for members of the Federation to get involved in the legislative process at the federal level.As of the writing of this piece, we are still planning to host an in-person Washington Seminar at the Holiday Inn Washington – Capitol, located at 550 C St., SW Washington, DC. For the most up-to-date information, please visit the Washington Seminar page on our website at nfb.org/washington-seminar.
by Carla Keirns
From the Editor: Dr. Carla Keirns lives with her family in Kansas City, Missouri. She is a doctor of internal medicine, a professor at the University of Kansas School of Medicine, and a member of the National Organization of Parents of Blind Children Board. She is also an active member of her chapter and affiliate. Carla has a son named Russell, and he has been a regular participant in our BELL Program. Here is what Carla has to say about sleep and blind children:
My baby was a great sleeper. Like normal babies, he needed milk every two to three hours initially. But as he got bigger, he could eat more at once, and by eight weeks he was sleeping a block of six hours most nights. By four to five months it had gotten to nine to eleven hours.
Babies normally sleep short segments throughout the day and a longer period at night. They do their own thing. As they get older, toddlers and preschoolers gradually transition to consolidated sleep at night and one nap during the day, and by kindergarten most stop napping.
We hit a snag when my son turned two. We moved across the country from New York to Kansas City. Strange men came and packed up everything we owned into a big truck and took it away. Mommy and Daddy each took a car and drove 1,400 miles. Our little boy came with me, and we broke up the drive by stopping to see family along the way. When we got to our new home, it was full of boxes. The following Monday he started at a new day care. He was not having it. He was stressed and overwhelmed by the move, the week long cross-country drive, and all new child care. He didn't understand what was happening. He cried every day at day care drop off for three weeks. On the third day he cried so hard and for so long that he threw up several times. The staff called me to pick him up, and after that he was fine.
He also regressed in sleep. He started waking up every three hours again for a cuddle, milk, and maybe some lullabies. We had twenty-two different renditions of Twinkle, Twinkle on my phone. Then he went back to sleep.
But it didn't really get better. Within two months he gradually shifted. He did start sleeping longer than three hours but only on weekends from 3:00 to 9:00 a.m. He was up until 2:00 to 3:00 a.m. every night, hard to awaken at 7:00 for preschool, napped two to three hours after lunch, and then up until 3:00 a.m. again.
I asked his pediatrician, and she said all little kids have sleep problems, "But it's all behavioral. Kids don't have organic sleep disorders." She gave me a list of sleep rules for kids to encourage good habits.
It helped. He started falling asleep at 2:00 a.m. instead.
When I asked his doctor again, I got the same list. His teacher gave me the list. The "sleep guru" at school had some great advice about limiting his nap time so he would be more tired—and yes, the list.
I asked about seeing a sleep medicine specialist, but the pediatric sleep doctors at our local children's hospital won't see children unless their pediatricians refer them. Parent referrals are not accepted.
One night I was on call for the hospital and was on the phone with a colleague who is the father of four now-grown children. While we were talking about a patient, my son came up and asked me something. My colleague said, "That’s a very awake three-year-old."
I said, "Yeah, he's like that every night—dancing on the bed at 2 a.m. like it's the middle of the day."
I asked his eye doctor if it could be his eyes. He has albinism, an eye condition that causes photophobia because the irises and whites of his eyes are missing a pigment layer that acts like blackout curtains in your eyes. His eyes literally leak light through structures that are supposed to block it. His doctor shrugged and said he had never heard that.
I asked his pediatrician about melatonin, and she said there is not enough data on it in kids. She couldn't recommend it.
We were referred to behavioral medicine. More recommendations about routine, behavior, following directions, and play therapy were given. It made no difference. Were we doing it wrong?
He was still up past midnight every night, usually until 1:00 to 2:00 a.m., even with strict routine according to the list. A full year passed—with no answers. I was desperate. It was ruining my health and threatening my job.
I started searching the medical literature. I had done this before, trying to figure out if melatonin was safe to use. But I found a lot of confusing and scary studies, particularly from Europe and Australia, about possible links between melatonin and developmental disorders. This time I started with circadian rhythm and albinism. There were thousands of studies—in mice. Albino mice have been standard lab animals for medical and psychological research for decades, and they are known to have abnormal sleep cycles.
But I didn't have a mouse, I had a little boy. There were only a handful of studies, less than ten or so involving children. One of the most on point was nearly forty years old. Done at a school for the blind in South Africa, it documented sleep problems. Their kids with albinism had suppressed melatonin. The hormone that tells your body to go to sleep was missing. It was suppressed because they got too much light.
This is why you are told to dim the lights before bedtime, to avoid screen time within an hour of sleep, and to make sure your bedroom is dark. This is also why people who work evening and especially night shifts have a difficult time sleeping. Exposure to bright light, particularly full-spectrum sunlight, resets the circadian rhythm. But if you have albinism or aniridia, even indoor light can be very bright for you. It's like the lights in the living room were tricking my son's brain to think it was the middle of the day. It's not just that he wouldn't sleep; he wasn't tired. The fact that he wasn't tired until five hours in the darkness made sense.
I started giving my almost four-year-old melatonin. Within a week, it was clear we were on the right track. Within two he was going to sleep by 10:00 p.m. It took a couple more weeks to get the dose and timing right—asleep by 9 p.m. The angels started singing, or maybe it was just a hallucination from my sleep-deprived brain.
I went back and asked his pediatrician about melatonin. Again, not enough data in kids was her reply. I can't recommend it. But if it's working for you, give it a try.
I asked for a referral to sleep medicine; she sent one. They called. The clinic is very busy. It was summer. We were given an appointment for the following March. Then we got a call in January; they had a conflict and would need to move us to May. We waited. I gave him melatonin in his milk every night at bedtime. It was life changing.
We finally got to see the sleep doctor thirty-four months after my son started staying up until 3 a.m. every night, and twelve months after I started him on melatonin on my own.
I told the doctor our story, and he laughed and said, "You figured it out. What do you need me for?"
"I'm not a pediatrician. Is it safe? How much do I give him? Does he need to take breaks? How will I know if he doesn't need it anymore?" He was knowledgeable and kind. He answered all my questions in about fifteen minutes. As long as he got his melatonin, we all slept happily ever after. If we ran out, we felt it that night. When he decided he didn't like the raspberry or grape liquids any more, it took a few months and lots of trial and error to find something else he would take. Gummies? Nope. Dissolving tablets? Uh uh. Chocolate? You would have thought, but I could only find it hard candy coated, and my kid would not try them. Finally, one of his teachers said there were flavorless capsules at the health food store. We were set again.
When we came for follow up, I told the sleep doctor that I saw inquiries about this at least once a month in the parents of blind kids and albinism Facebook groups. At the NOAH meeting I asked the scientific experts on albinism if they knew about sleep issues. They shrugged and looked at each other. Nope. But the audience members, adults with albinism and their parents, started telling their own stories—lots of them.
We went back to see the sleep doctor for routine follow up. I said we should study it. He said he had a handful of these patients. I said, "How many?" He said maybe ten. I said, "You know that visual impairment serious enough to require special education is a less than 1/1000 diagnosis in kids? Maybe more like 1/2000? (These numbers come from special education enrollments and are known to be undercounts. By how much no one knows.) Even in his practice, they are over-represented. This is the problem with rare diseases. The small numbers distributed throughout the country mask the extent and seriousness of the problem.
We finally agreed to try. Our sleep doctor recruited colleagues in sleep medicine and ophthalmology. I asked for help from a friend who is a sleep researcher. We worked with our local preschool for blind children, where lots of parents reported sleep struggles. We asked the National Federation of the Blind and the National Organization for Albinism and Hypopigmentation (NOAH), and they reviewed our survey and agreed to share it with their members.
Eighty-nine percent of kids with visual impairments whose parents completed our survey reported sleep scores consistent with a diagnosable sleep disorder. Boom. Thanks to all of you and a group of doctors and professionals in Kansas City who listen to moms. Now we have some answers for those sleep-deprived kids and their families and some guidance for their pediatricians. Thank you, David Ingram, Jose Cruz, and Erin Stahl!
What can you expect if you see a doctor for sleep problems? Sleep is a complicated and essential process to keep us healthy and restore the brain and body for the next day. Sleep problems lead to more attention and behavior problems, injuries, mental health problems, and obesity. In adults there is evidence sleep issues and lack of adequate sleep contribute to diabetes, high blood pressure, heart attacks, and possibly Alzheimer disease.
Recommendations vary, but most experts suggest a medical evaluation if sleep problems last longer than two to four weeks, particularly if the change is severe or sudden, there are other concerning symptoms, or more straightforward advice isn’t helping. A careful sleep history is critical to making sense of sleep problems: Does the child have trouble falling asleep or staying asleep? Is the child waking with movements particularly of the legs, heat, cold, sweats, racing heart, fear/nightmares? Is the child waking up with breathing problems or is he/she snoring? Does the child experience heartburn after meals or lying down? Are there problems with coughing or hiccupping? Is there daytime sleepiness?
There may be many more questions, because the evaluation of the likely cause determines next steps. A doctor may order tests for iron levels, vitamin D levels, other vitamins, hormones such as cortisol, thyroid, or tests for any medical condition they think might be the underlying problem. Kids with neurological or hormonal/endocrine diagnoses are known to be more likely to have sleep disorders, as are kids with developmental delays and disabilities. Some children will be recommended for an overnight sleep study, where brain waves, oxygen levels, breathing, and body movements are tracked. The brain waves are followed through the night to be sure the child is progressing normally through the early and deeper levels of sleep, entering restful stage 4 sleep, and re-emerging into rapid eye movement or REM sleep when we dream. It is normal to progress through these stages from 1 to 4 and back to 1 in 60-90 minutes, with some variation by age. Over the course of the night the REM periods will be longer, which is why there are more dreams in the second half of the night. It is normal for most of the body’s muscles to be paralyzed during sleep, except for the diaphragm that controls breathing and “smooth muscle” such as in the internal organs and blood vessels. If this mechanism doesn’t work, a person could act out their dreams physically and hurt themselves.
“Restless leg syndrome (RLS)” is a common condition in adults and children associated with low iron levels, though in kids it presents with more of a pattern of poor sleep and overall body movements. And low iron in kids can be due to a number of factors and needs its own evaluation. One cause we missed in my own son is too much milk intake—because the cells that absorb iron in the intestines are the same ones that absorb calcium, and so they can compete with each other.
The recommendations may include changes in diet, medications such as melatonin or others, use of a light box for 30-60 minutes in the morning (a special artificial light that gives the full spectrum of wavelengths to mimic the sun), treatment of sleep apnea with surgery to relieve airway obstructions or continuous positive airway pressure (CPAP).
And all those people who gave us the list of sleep tips were not wrong. It’s excellent advice for anyone. It just won’t fix the problem if you have an undiagnosed or untreated medical reason for sleep problems. Have a regular bedtime routine. Wind down in the evening: no caffeine for at least six hours before bed, no vigorous exercise for two hours and ideally no screen time for one to two hours. A bath, snack, and/or bedtime story can be helpful. Keep the bedroom cool and comfortable, and ideally keep it for sleep, with play, study, and electronics in other rooms of the house.
For people who are blind or visually impaired, light is probably key—with some of us getting no light to anchor our body’s internal clocks (causing non-24) and others getting too much and confusing them. By the time he was six, my little boy could explain that “lights in the house trick my brain and make it think it’s the middle of the day so I’m not tired at bedtime.”
This has been a summary. The full paper is available via “open access,” free to anyone to read at: https://journals.healio.com/doi/10.3928/01913913-20210623-01?fbclid=IwAR089Zhk3NK0qmmh-P0Ntnd_WBTIxsFNRwRc4u05DupCxgWFPFLDC5sq0N8
National Institute for Child Health and Human Development on Sleep
Centers for Disease Control: Do your children get enough sleep?
Mayo Clinic Health System: Is your child getting enough sleep?
HealthyChildren.org, A website of the American Academy of Pediatrics: Healthy Sleep Habits
American Family Physician: Common Sleep Disorders in Children
by Marc Maurer, Susan Gashel, and James Gashel
From the Editor: These authors need little introduction to Monitor readers. Marc Maurer has been an NFB leader for decades, serving as President for twenty-eight years. James Gashel is well known for leading our governmental relations efforts for more than thirty-three years. Susan Gashel is a lawyer practicing in Honolulu, where she retired from the state of Hawaii as a deputy attorney general in 2012. In her law practice she represents blind people and state agencies throughout the United States and Canada, specializing in Social Security and Randolph-Sheppard matters. Contact information for all three is included at the end of this article as well as information as to how to reach our national office with Social Security concerns. Here is the article:
Want to get the most out of Social Security? Not sure about your current situation? We know the law, and we may be able to help. The matter described below is one of many examples.
Let's say you are age twenty. Having once been twenty we know that planning your eventual retirement is last on your list of priorities. We knew about Social Security, but how much would we get? We had no clue, and we really didn't care much either.
Little did we know. Maurer and Gashel were blind long before they were twenty. How could this fact affect our Social Security at retirement? Who knew; we didn't, but we do know now. Here's why being blind can be an important factor in your favor.
The amount of each person's Social Security benefit is not a crap shoot; it's based on your lifetime earnings and calculations made by Social Security personnel. Everyone's amount is individually determined. There is no flat-rate benefit.
The calculations made to determine your Social Security benefit are prescribed by law. Retirement benefits are computed in most cases with formulas applied to the highest thirty-five years of earnings. Thirty-five years must be used, with some exceptions, even if there are no (or very low) earnings in some years. Exceptions may be made for anyone who becomes disabled before retirement and for people who qualify for child care drop-out years. Most wages until you reach age sixty or become disabled are indexed to reflect the relationship between your individual wage and the average wages of all workers during the years you worked. Wages received during retirement are not indexed. All wages, both indexed and actual, are averaged to obtain a monthly amount. Four-hundred-twenty (420) months are used when the number of years is thirty-five.
Disability before retirement can make a difference. For example, after having worked enough to have insured status under Social Security, all years when a person is blind, whether working or not, may be set aside from the person's earnings record. Imagine that. Take someone who is blind from childhood and works for a year-and-a-half before age twenty-eight. The individual would have "disability insured status” under Social Security. Once insured, people who are blind never lose insured status.
A "period of disability" under Social Security can begin for anyone who is both blind and has worked enough to have insured status by paying into Social Security; for example, a year-and-a-half of work anytime up to and including age twenty-eight. Persons not yet blind or not yet insured by age twenty-nine need a year-and-a-half plus one more quarter of work to be insured under Social Security while age twenty-nine. The number of quarters needed for insured status goes up by one for each year after age twenty-eight but stops when insured status is achieved. Once achieved, a blind person's period of disability can begin, even if the individual is working and not receiving cash benefits. One quarter of coverage is earned whenever you earn $1,470 in 2021, and $5,880 for four quarters, no matter when earned during the year.
This term "period of disability" may also be called a "disability freeze," a "freeze period," or a "DIB freeze." No matter the name, the effect of the freeze is the same.
Remember the rule above about thirty-five years used to compute retirement benefits? All years within a period of disability can be subtracted from this number if the result would be a higher benefit. Therefore, if our mythical applicant, blind from childhood, works enough to achieve insured status upon reaching age twenty-eight and remains blind until retirement, thirty years can be subtracted, so only the highest five years, not thirty-five years, are then used to compute retirement benefits. The years within a period of disability can't be used to compute the worker's average earnings. Only years before the period begins, and years after the period ends at and after retirement age can be used. But don't worry, the period of disability won't be applied if the benefits are higher without it.
There is no limit on earnings at full retirement age under Social Security. Therefore, our mythical blind person can continue to have regular earnings while still getting Social Security. This is recommended since the years worked beginning at retirement can be used to compute the average wages. These wages earned during retirement are almost always higher than the individual would have had during many years before age twenty-eight, thirty, or even older.
The effects of using a period of disability before retirement can be dramatic. Three examples make the point. Compare the following, but remember that all benefits are computed based on individual facts, which can lead to very different results.
Betty, John, and Bill were all born in January 1954. They each had earnings beginning in 1975. The amount each of them earned every year was identical until they reached retirement age, age 66 in 2020. According to Social Security, their identical earnings were considered to be average. Betty and John still have the same average earnings during retirement; Bill does not. Betty and Bill are sighted and never disabled. John has been blind since childhood. We compute their benefits below using the detailed benefit calculator provided by the Social Security Administration, Office of the Chief Actuary.
Betty, John, and Bill all applied for retirement benefits, and each received approximately $1,871, beginning January 2020. Bill stopped working when retired and has had no more earnings. All future increases he will get will be cost-of-living adjustments only.
Betty, (sighted and never disabled) and John (blind since childhood) each earned $55,000 in 2020 and $55,500 in 2021. Betty's estimated benefit beginning January 2022 is $1,910. John, by comparison, can expect to receive $4,423.30. Neither estimate includes the December 2021 cost-of-living increase.
The increases for both Betty and John result mostly from their earnings during retirement. John's is much higher than Betty's, however, due to his previous period of disability, which ended at retirement. In fact, only the earnings John has had during retirement, no earnings before retirement, are counted for a two-year average. Betty has no period of disability. Therefore, her benefits are based on a thirty-five year average.
We didn't think so, but it really can pay to be blind. The only difference between Betty, John, and Bill is John's blindness. Blindness starting in childhood with work at age twenty-one and twenty-two give John entitlement to a period of disability beginning January 1, 1977. His retirement benefit beginning January 2022 can be computed with only two years (not thirty-five years), his earnings in 2020 and 2021 being counted in the average.
Not all examples are exactly as favorable for applying a period of disability. For example, if John became blind not in childhood but at age twenty-eight, his retirement benefit in January 2022 would be about $2,078, much less than being blind from childhood, but still $168 per month higher than Betty gets based on exactly the same earnings. An individual's age, when blindness was first found documented at the youngest age possible, and work (best at a young age) to earn insured status are the most important variables. Part-time work in the summer or while in school can count.
To take maximum advantage of these variables, every blind person, working or not, should be sure that a period of disability has been determined and is on file with the Social Security Administration. This has already been done for anyone who has received (or is receiving) Social Security Disability Insurance cash benefits based on the individual's own earnings and not on earnings of a parent. However, the beginning of the period of disability used to award cash benefits may not be the earliest that could be documented. This should be reported to Social Security and corrected when applying for retirement or before.
Blind people who have never received disability insurance (especially those who have been blind for many years), should contact Social Security to apply for a period of disability based on blindness. If you are working, you can still be eligible for a period of disability to be established without receiving cash benefits. If you are not working (or not working very much), you may be eligible to have a period of disability established and also to get cash benefits.
In all cases, it is important to get the period of disability established and documented. To have the greatest effect, you want the record to show the earliest date when blindness was found. You can still get this determination even if you are applying many years after becoming blind by filing a Disability Insurance application to get a period of disability established, to begin at any time in the past up to your full retirement age, but, after you reach retirement age, you only have twelve months to file an application for a prior period of disability. Don't forget that twelve-month deadline.
Want to know more? Contact the authors with questions or for further assistance:
Email Marc Maurer: [email protected]
Email Susan Gashel: [email protected]
Email James Gashel: [email protected]
Email our national office: [email protected]
by Kyle Walls
From the Editor: Kyle Walls is one of the most talented writers it is ever been my pleasure to edit. He works on behalf of our Policy and Advocacy team, and whether it is good news or bad news, Kyle can package it in a way that is interesting and understandable. Here is what he has to say about recent changes at the United States Postal Service:
“Neither snow nor rain nor heat nor gloom of night stays these couriers from the swift completion of their appointed rounds.”
You may read these words and think of them as the motto of the United States Postal Service (USPS). The truth is they are not. The USPS has no official motto, and these words, though carved in stone over the entrance to the New York City Post Office on 8th Avenue, are actually from the writings of ancient Greek historian Herodotus as he described the Persian system of mounted couriers during the wars between the Greeks and Persians in the fifth century B.C. The passage is frequently used to describe the USPS and its tireless delivery of the mail. Unfortunately, the USPS may have to remove “swift” from the above inscription due to a new policy that started in October. Below we answer a few basic questions about what will (or won’t) be in your mailbox in the coming months.
On October 1, 2021, the Postal Service moved forward with its new “service standards” which were outlined in March of 2021. In plain English, the “service standard” is the amount of time it takes for any given piece of mail to be delivered anywhere in the country. The USPS formerly defined this standard as three days, but the new standard is anywhere between two and five days. The good news is that most of the mail processed, approximately 70 percent, is still projected to be delivered within three days.
The short answer: because we simply don’t use the USPS as much as we used to. The Postal Service is the rare example of a federal agency that only receives taxpayer funding in extreme or emergency circumstances, which means that it is almost exclusively funded through the sale of postal products (i.e. stamps, boxes, shipping costs, etc.). Since we have become a more electronically connected society, we don’t send things via USPS nearly as much as we used to, which has caused a significant decrease in funding for the service. To offset that decrease, the current postmaster general and the bipartisan USPS board of governors voted to implement a ten-year plan that will use alternative modes of transportation for the mail, which ultimately results in slower service.
Your time to respond to certain items, like mail from the Social Security Administration, likely just became a little shorter. For example, before October 1, if you received a piece of mail that required a response within ten days of the postmark, you probably received it two to three days after the postmark, which means you had at least seven days to respond. However, if you received that same piece of mail after October 1, there’s a chance it didn’t get to you until four to five days after it was postmarked, meaning you now only have about five days to respond. It may not seem like much, but if you only check or read your mail once a week, it could be the difference between making or missing your chance to reply to an important item.
Be diligent about checking and reading your mail more frequently. This will ensure that you don’t miss anything important. Additionally, you can educate others about this change so that your family and friends don’t miss anything important either.
by Patti Chang
From the Editor: Patti has made many contributions to our organization as a chapter president, affiliate president, and a member of our national board. All of these positions were volunteer while she worked full-time as a lawyer for the city of Chicago. She is now our director of development, another career for her and a tremendous benefit for us.
This holiday season I am celebrating the many holiday heroes who help raise expectations for the nation’s blind. There are so many parents, teachers, researchers, advocates, and people simply living the lives they want who help the National Federation of the Blind achieve our mission. I want to celebrate their stories and share their positive philosophy on blindness.
Josh Miele, an adaptive technology designer and 2021 MacArthur Fellow said:
“I’m proud to be blind, I’m proud of the community I am part of, and I love building and imagining cool technologies for blind people.”
A parent of a child in the NFB BELL® Academy shared:
“My smart, capable child can read, thanks to the National Federation of the Blind (NFB). My child is a dual-media reader, which means he has enough vision to read some print but needs literacy in both print and Braille for true sustainable success.”
Lizzy Muhammad-Park, winner of the 2021 Kenneth Jernigan Scholarship, said:
“The Federation's first investment in my future gave me the chance to "live the life I want" at home and abroad. Blind mentors provided leadership opportunities, taught me how to advocate on Capitol Hill, and advised me on independent international travel. My Federation family is always there when I call: they are people who encourage me out of my comfort zone, advise me when I become confused, and support me in times of disappointment and celebration.”
These testimonials and many more demonstrate the impact of the National Federation of the Blind’s programs and network of mentors. You or someone you know are surely a great example of what is possible, and we need your support to continue making a difference and changing lives.
With a $50 gift, the National Federation of the Blind can send a long white cane—free of charge—to a blind person and give back mobility. With the same amount, the Federation can provide early literacy materials to families, which empower parents to help their blind child get an early start to Braille literacy. With a gift of $100 or more, we can train a new cohort of teachers of blind students, show blind youngsters that they can pursue STEM careers, and so much more. Be a part of our mission and everything the Federation does with love, hope, and determination.
We can’t change lives without you. Please help by making an end-of-year gift—it’s easy to do. You can mail a check, contribute by phone, or give online.
We all know that the Federation inspires blind people to live the lives they want and gives them the tools to achieve their dreams. Celebrate our Holiday Heroes and support the next generation with an end-of-year contribution. Thank you for being a part of our movement.
by Ramona Walhof
From the Editor: Ramona is one of those people who causes me to ask why I should write an editor's note. She has helped to give real meaning to the word active as in active Federationist, so the idea that someone might not know her is almost beyond belief. Her service has been at all levels of the Federation from committee member, chapter president, affiliate president, national board member, and officer. Of all that she brings to her work, the most important adjective is caring. Here is what she says about a friend, colleague, and longtime Federationist:
What can one woman accomplish without ever holding office in the NFB? Doris Willoughby graduated valedictorian from Boulder High School in Colorado and attended Grinnell College in Iowa. She taught second grade for eleven years in Cedar Rapids, Iowa. Doris met Curtis Willoughby in 1966, and they were married in June of 1967. The newspaper reported that the couple honeymooned in Clear Lake, Iowa, Los Angeles, California, and in the state of Hawaii. The reason for the stop in LA was the 1976 Convention of the National Federation of the Blind.
Blindness never bothered Doris. She began driving and reading for Curtis immediately, and soon other blind people were included.
Judy Young was a blind student in elementary education at the State University of Iowa, but the University said it could not find an appropriate place for her to student teach. This was not a problem for Doris, who got her principal's agreement that Judy would student teach in Cedar Rapids under Doris's supervision. It did not hurt that the principal was a member of the same Lions Club as her husband. Judy became an excellent teacher, got a job in Urbandale near Des Moines the following year, and that newspaper wrote a wonderful feature story about her. It quoted parents of her students saying what a good year their fourth graders were having in Judy's class.
Doris began studying to teach blind children on her weekends and evenings. She received the necessary credential in 1969 from the University of Minnesota. Doris began teaching blind children the following year. When Curtis took a job in Des Moines, Doris taught blind children there.
I believe it was in 1974 that Doris came to me to speculate about whether it would be appropriate to give a blind four-year-old a white cane. The child was unwilling to move around her preschool classroom without being led. I thought she should give it a try. Doris decided to use the lower, small end of the cane and arranged to have a special one made with a small handle for the small hand. When I next thought about it several months later, she reported that it was working "perfectly." This may have been the first time, but many others soon began to provide white canes to very young blind children.
Doris continued to teach blind children in central Iowa until the Willoughbys moved to Colorado in 1993. Then she taught near Denver. After her first retirement, she taught blind adults at the NFB's Colorado Center for the Blind for several years. She taught those who were preparing for US citizenship and for their high school equivalency exams. Always, her expectations of her students and her willingness to provide extra assistance were noticed by her fellow teachers.
Doris believed that if classroom teachers had more knowledge about blind children, the students would have a better experience in public school. So she wrote her first book, Your School Includes a Blind Student. There were two editions published: one in 1974 and the second in 1981. Both were encouraged and published by the National Federation of the Blind.
Doris soon realized that parents and teachers of blind children often did not know what were reasonable goals and expectations for their blind children. So she wrote her second book, published in 1979, A Resource Guide for Parents and Educators of Blind Children. Although this book is not up to date, it is still being used, and a few used copies are available on the internet.
Carol Castellano said of this book: "It saved our lives!" She explained: "We were in a hospital room far from home awaiting our infant daughter's return from eye surgery when a social worker came in and offered us some pamphlets and a small book to read. Feeling sick inside from the words I was reading about blindness, I read it all. But when I got to the book, A Resource Guide for Parents and Educators of Blind Children, I felt myself lifted up. Not only could my child survive as a blind person, but she could thrive! The author of the book was Doris Willoughby, and right then and there, Doris became a profoundly important person in my family's life.
When the social worker returned, I told him I really liked that book. He said it was from the National Federation of the Blind and told me they had some pretty good literature, but I should stay away from them. They were radical and militant.
So Doris was also my introduction to the NFB. The first phone call I made when I got home was to the NFB. Five years later at my first NFB convention, I met Doris, Curtis, and others who graciously gave their time to comfort, model, and teach this new parent. Over the years, Doris wrote other books on the education of blind children, all with that same fundamental optimism, practicality, and positive attitude that have given parents and teachers through the decades not only hope but common sense guidance on how to raise and educate their blind children successfully.
Barbara Cheadle was the founder of Future Reflections, the magazine for parents of blind children. She also served as president of the Parents of Blind Children Division of the NFB for twenty-five years. She writes: "It was Doris who systematically and successfully applied the Federation philosophy to the education of blind children in the integrated public school setting. It would have been much more difficult, if not impossible, to have launched Future Reflections and the National Organization of Parents of Blind Children without the foundation Doris laid with her NFB books and articles. She was integral to the success of all the Federation's outreach efforts to parents of blind children. Our workshops, seminars, articles in Future Reflections, educational videos, Braille Readers are Leaders Contest, and the campaign to get white canes into the hands of blind kids as early as possible all contain her imprint. For years, out of her home, she coordinated the distribution of videos promoting the use of white canes for blind kids."
The third book co-authored by Doris Willoughby and Sharon Duffy was entitled Handbook for Itinerant and Resource Teachers of Blind and Visually Impaired Students. It was published in 1989. The book is a detailed guide for lesson plans and approaches. Although somewhat out of date, it is still being used by the University of Northern Colorado teacher of blind children training program and is available used in limited numbers from used book sources on the internet. Doris's last book was published in 1998 and was also co-authored by Sharon Monthei (formerly Sharon Duffy.) It is still available from the Independence Market and is entitled Modular Instruction for Independent Travel for Students Who are Blind and Visually Impaired: Preschool through High School. Sharon says that it was Doris who convinced her that she could write, and Sharon has written three additional books which have been beneficial to blind people.
Doris's mother, sisters, and her husband were all ham radio operators, so she also became licensed in 1990. As a ham she worked with Curtis on emergency preparedness within the NFB and in projects with other groups. For many years Curtis and Doris together distributed and kept track of special devices for the hearing impaired and Spanish speakers needing translation during NFB conventions.
Doris was active in her church in Cedar Rapids, Des Moines, and in the cities where she lived in Colorado. She and Curtis attended at least fifty NFB conventions, and she was most disappointed when her health prevented their attendance in 2019.
For her work Doris received numerous awards. She was the Distinguished Teacher of Blind Children at the Fiftieth Anniversary Convention in 1990. The NFB of Colorado awarded Doris and Curtis the Ray McGeorge Award. The Parents of Blind Children Division presented her with two awards, one in 2008 at its twenty-fifth convention and one in 2010.
I cannot begin to mention all those who commented on Facebook and in other ways about how Doris has influenced and helped them. She was a builder and leader in changing opportunities for blind children and in giving hope and guidance to parents and teachers. Her written work is still influential. Her determination, creativity, generosity, and accumulated knowledge and skill made her a model for all to remember and emulate. We owe her a huge debt. The repayment will be to continue to build on the foundation stones she laid.
Blind children, students, and adults are making powerful strides in education and leadership every day across the United States. For more than eighty years, the National Federation of the Blind has worked to transform the dreams of hundreds of thousands of blind people into reality. With support from individuals like you, we continue to provide powerful programs and critical resources for decades to come. We sincerely hope you will plan to be a part of our enduring movement by including the National Federation of the Blind in your charitable giving and in your estate planning. It is easier than you think.
With your help, the NFB will continue to:
The National Federation of the Blind legacy society, our Dream Makers Circle, honors and recognizes the generosity and vision of members and special friends of the National Federation of the Blind who have chosen to leave a legacy through a will or other planned giving option. You can join the Dream Makers Circle in a myriad of ways.
You can specify that a fixed sum of your assets or property goes to the National Federation of the Blind in your will, trust, pension, IRA, life insurance policy, brokerage account, or other accounts.
You can specify that a percentage of your assets or property goes to the National Federation of the Blind in your will, trust, pension, IRA, life insurance policy, brokerage account, or other accounts.
You can name the National Federation of the Blind as the beneficiary on a Payable on Death (POD) account through your bank. You can turn any checking or savings account into a POD account. This is one of the simplest ways to leave a legacy. The account is totally in your control during your lifetime, and you can change the beneficiary or percentage at any time with ease.
If you do decide to create or revise your will, consider the National Federation of the Blind as a partial beneficiary.
Visit our Planned Giving webpage 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.
Ways to Contribute Now
Since the start of 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.
The NFB 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. We can also answer any questions you have.
General donations help support the ongoing programs of the NFB and the work to help blind people live the lives they want. You can call 410-659-9314 and elect option 4 to donate by phone. Donate online with a credit card or through the mail with check or money order. Visit our Ways to Give webpage for more information.
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 withdrawal of funds from a checking account or a charge to a credit card. To enroll, call 410-659-9314, extension 2213, or fill out our PAC Donation Form online (https://nfb.formstack.com/forms/pac).
If you have questions about giving, please send an email to [email protected] or call 410-659-9314, extension 2422.
by Terry Boone
As a service to our members and the general public, the National Federation of the Blind operates a blindness products store known as the Independence Market, which sells mostly low-tech items, designed to enhance the everyday independence of blind people. We will be highlighting a different product every month and listing sale products from time to time.
TALKING ALL PURPOSE THERMOMETER: This digital talking thermometer can be used for cooking, candy making, bath water, gardening, and hobbies. The unit features a power/talk button with automatic shut-off after ten minutes, a retention loop for hanging, and a probe cover with hanging clip. The unit uses two AAA batteries (included). AIK39T $35.00
BRAILLE MEASURING SPOONS (SET OF FOUR): These plastic measuring spoons are labeled in print and Braille and include a metric measurement in print. The following measuring spoons are included: 1/4, 1/2, 1 teaspoon, and 1 tablespoon. AIK43S $6.00
BRAILLE MEASURING CUPS (SET OF FOUR): These plastic measuring cups are labeled in print and Braille and include a metric measurement in print. The following measuring cups are included: 1/4, 1/3, 1/2, and 1 cup. AIK45C $9.00
POT CLIP FOR AIK39T THERMOMETER: Use this handy clip to attach your all-purpose talking thermometer (AIK39T) to the side of a pot to monitor the temperature of liquids. The thermometer is sold separately. AIK46C $4.50
Solitaire and Fox and Geese AIG75G $10.00
Shut the Box Math Game AIG73S $10.00
Egg Separator AIK04E $ 1.00
For more information about the products available from the Independence Market, contact us by email at [email protected] or by phone at (410) 659-9314, extension 2216, Monday through Friday from 8:00 a.m. to 5:00 p.m. eastern time. Our staff will be happy to assist.
by Lisa Bryant
From the Editor: Lisa lives in Philadelphia and has been a member of the Keystone Chapter for several years. She is currently the cohost of the White Canes Connect podcast, the official podcast of the National Federation of the Blind of Pennsylvania. Readers will remember Lisa’s previous contribution, “Feeling Through,” which appeared in the July 2021 issue. What you may not know is that Lisa graduated with a degree in journalism and has just been accepted into the Constellation Leadership Initiative, a seven-month training, mentoring, and career-coaching program for journalists of color. Here is what Lisa has to say about her most moving trip:
When I shared with friends that I was planning a visit to the National Memorial for Peace and Justice and the Legacy Museum, reactions were mixed. Some said there was no way they could make such a solemn trip, while others were intrigued and said the sites were on their to-do list as well.
Confronting accounts of our country's brutal, horrific history of slavery, lynching, and its crushing effects of segregation on Black Americans is indeed painful. Connecting that history to how justice today is meted out on Black men and women is equally hard. But it is a necessary confrontation.
Located in Montgomery, Alabama, on the very site where slaves were warehoused before sold locally or transported to other states, The Legacy Museum is the work of the Equal Justice Initiative (EJI), headed by acclaimed public interest lawyer and author Bryan Stevenson. Part of EJI's mission is to ensure that all of America's history is told, including its vicious history of slavery.
As a visually impaired African American, I wondered if the collection was accessible. So, prior to my visit I contacted the staff and inquired about accommodations. The staff was receptive and seamlessly arranged for a guided tour. I learned they also had about fifty Braille guidebooks on site. It seemed accessibility had carefully been considered.
"I've always cared deeply about exclusion and what it's like to be marginalized," said Stevenson, adding that accessibility was incorporated at inception. "We believe everyone needs to confront the legacy of racial injustice that undermines fair treatment for people in this society, and we want our spaces to be as accessible as possible."
Given the history behind the museum's location, it follows that the first exhibit shows the incredible albeit dishonorable role Alabama—and Montgomery in particular—played in the domestic slave trade. Through my guide, Ariel, I learned that in 1860 the state had more slave-trading spaces than either churches or hotels, and in that same year, two-thirds of Montgomery's population were slaves. Further, Montgomery led the state in the domestic slave trade while Alabama ranked second in the nation as having the most slaveowners.
Following the main entrance exhibits, visitors are then led to a hallway featuring holograms of slaves recounting their traumatic stories. I listened to a young woman painstakingly detail her experience of her family being warehoused, then separated from her sister, never to see her again. The ramp leading to the holograms is dark, so low-vision guests should exercise caution. Hearing these reenactments is a powerful audio experience.
Visitors then enter the main gallery displaying the extensive research EJI has compiled on slavery, lynching, and segregation. As expected, there are plenty of photos; but the exhibit is dense with text and in various forms such as strips that run down the walls and on the floor. Also on display are replicates of posters advertising slaves for sale (with great details to entice a potential buyer) and ransom notices for runaway slaves. My guide, Ariel, was quite thorough in reading and describing. I also found the narrating app, Seeing AI, helpful.
In the center of the main gallery is the Racial Terror Lynching Map, an interactive touchscreen kiosk. The map is a visual representation of EJI's five-plus years of researching lynchings in the United States. The research found there were more than four thousand lynchings in a dozen states. This figure represents what they were able to document—the toll could be much higher.
Using the touchscreen, you can select a state and see not only the number of lynchings in that state but also the names of the victims. Again, the number could be higher as many Black citizens lacked access to proper identification. The touchscreen is accessible for those with partial or low vision. However, there is no audio, Braille, or tactile component to this exhibit.
In the same kiosk are videos from current, direct descendants of lynched victims. The stories are graphic and difficult to take in. While the audio is good quality, there is no Braille or tactile accessibility.
Just beyond the interactive kiosk sit over three hundred jars of soil gathered through the Community Soil Collection Project. EJI began the project in 2015 with volunteers collecting the soil from documented lynching sites across the country. This is a moving display with each jar bearing the names of murdered men and women along with the county and date of their lynching. My guide read a selection of these names for me. I neglected to test it, but I believe Seeing AI would have read the text.
As you move to the exhibits on segregation, there are mounted quotes, facts, and videos, some recognizable, such as interviews of Martin Luther King Jr. There are also videos of staunch segregationists. One I found particularly disturbing was a White preacher using bible verses to support segregation.
This section is a bit challenging since many of the videos are playing simultaneously, and it is difficult to tune out the background because some volumes are louder than others. There are audio jacks for only some of the videos.
Although the last major exhibit is of our contemporary era, it eerily connects incarceration today of Black men to slavery, lynching, and segregation.
Through a simulated prison visit, actual inmates tell their stories. Visitors enter a booth and pick up the phone and hear the individual's account. One of the more tragic stories is that of Anthony Ray Hinton, who spent thirty years on death row in Alabama. Stevenson personally defended Hinton, and it would take over twelve years before forensic evidence finally proved Hinton's innocence.
What makes Hinton's case (and so many others like his) a haunting reminder of slavery and lynching is the blatant disregard for truth and the deliberate attacks on the rights of Black people. Hinton recalls being told by an arresting White officer that it did not matter if he was innocent or not; he was going to be convicted. Similarly, lynching victims were often murdered for the slightest offenses, some hardly rising to the level of a crime. On display are records of victims lynched for failing to respectfully address a White person.
As you exit the museum, you enter the Reflection Space with scores of photos of abolitionists, freedom fighters—some known and quite a few that never made the headlines but were just as noteworthy. My guide provided descriptions, but narrator apps will also help you independently experience this gallery.
The museum offers daily shuttle buses to the National Memorial for Peace and Justice. The memorial site is a serene yet solemn space and is the nation's first memorial dedicated to the history of slavery and lynching.
Just as you enter the space, you are met with a harrowingly realistic and life-sized sculpture of six chained and shackled slaves; one is a woman clutching a baby—also in chains. There appear to be streaks of blood running down the bodies of each piece.
There are sculptures throughout, but the main exhibit is the 860-foot-high slabs of steel bearing the names of lynched victims and the counties where they were lynched. The pillars are suspended, evoking the act of lynching. However this is not designed to be a touch exhibit; in fact, many are not within reach. There is ample room surrounding the pillars for white cane users, but the heights of suspension vary, so taller visitors will need to proceed carefully.
Stevenson said the EJI team continues to explore ways to keep the Memorial and the Museum accessible. He shared that the feedback from white cane users led them to change the surfaces of paths at both sites for smoother navigation.
According to Stevenson, there are a half-dozen guides trained with an emphasis on assisting blind and visually impaired guests with the content of both spaces. He also added that as COVID-19 restrictions lift and attendance increases, they will train more guides. The staff has also prepared more audio guides and Braille materials. The goal is to eventually have all content available in Braille.
A special thanks to my guide Ariel and the staff who helped me fully experience this dark history. As for the Memorial space, Stevenson said guided tours were suspended due to the pandemic restrictions, but they are committed to restoring that accommodation.
Performing Arts Creating Opportunities for all Performers:
As usual, the Performing Arts Division was busy during convention, raising expectations for blind performers and making connections across the country and even internationally.
We kicked off #NFB21 with an excellent concert on July 6. “One Voice: #StrongerTogether” was an evening full of exquisite blind talent across many genres, from folk to opera, R&B to jazz, hosted by the ever-witty Anil Lewis and Ryan Strunk. The show included performers from across North America, showing that we are truly stronger together as we break down barriers both on and off the stage.
On July 8 we had a jampacked division meeting, full of stimulating presentations. President Riccobono spoke about using our skills to help build the Federation, and we had a variety of reports from our board about our work this past year, including updates on our Spotlight newsletter, Scene Change podcast, “Singing Telegram” fundraiser, and how to connect with us on social media.
Two organizations with similar goals attended and spoke at our meeting. First we heard from Myrna Clayton from SHOWAbility seeking to represent blind and disabled talent in her agency, followed by Dr. Ranjini Kaushik with SciArtsRUs and the Artabilities 4 All Initiative, with whom we collaborated on a concert in September.
Even though our meeting was virtual, we still found a way to facilitate networking and personal connections among our members by using the Zoom breakout room feature. We had some great discussions about our personal goals as performers, obstacles we have faced, and what we hope to see happen in the division this year.
The pièce de résistance was our live recording of the Scene Change podcast during the last portion of the afternoon. Our vice president and host of the podcast, Lizzy Muhammad-Park, facilitated an excellent discussion all about audio description with our three all-star panelists: Dr. Joel Snyder, Roy Samuelson, and Everette Bacon, each offering unique and expert perspectives on audio description as both creators and consumers. You can find this episode and all our other podcasts by searching for Scene Change on your favorite podcaster, such as Apple Podcasts or Google Podcasts.
Again this year, Rachel Grider spearheaded another virtual choir. Musicians recorded their parts remotely, they were edited and compiled by Kyle Woodruff, and the pieces were premiered during general session and banquet. Distance cannot stop us from living the lives we want.
We continue to make strides forward in our division as blind performers, weather professional or hobbyist, musician or actor, on or behind stage and screen, and we hope that you will consider joining us to further increase equality and opportunity for all blind performers. Come connect with us on our website at www.nfb-pad.org
Spanish Interest Form for Braille Books:
Our partners at the American Action Fund for Blind Children and Adults provide free Braille books to thousands of blind children each year and are seeking interested participants for Braille books in Spanish. If you know someone who could benefit from Spanish Braille books, please share this link: https://www.actionfund.org/form/en-espanol-formulario-de-interes.
Notices and information in this section may be of interest to Monitor readers. We are not responsible for the accuracy of the information; we have edited only for space and clarity.
Touch of Genius Prize Accepting Applications:
The Touch of Genius Prize for Innovation is taking applications for year 2022. Applications are due January 14, 2022. The prize was developed to inspire entrepreneurs, educators, or inventors to continue the promotion of Braille and tactile literacy for blind and deafblind people worldwide. This prize can be granted for innovative and accessible computer software applications, tactile hardware, or curriculum that promotes Braille and/or tactile literacy. National Braille Press (NBP) encourages all applicants to think outside the box about what can be used to help improve the lives of blind people. Even if you have applied in previous years, we encourage you to apply again!
The winner of this prize will receive up to $10,000, which will help them to continue to innovate in the fields of technology and education for blind people. NBP is very grateful to the Gibney Family Foundation, who helped us fund and establish this award in 2007, inspiring people to go beyond what was thought possible. During this time, the award has gained recognition around the world and is now funded by National Braille Press.
Full application details, FAQs, and more information can be found at https://www.nbp.org/ic/nbp/technology/tog.html.
All questions can be directed to Heather MacLeod at [email protected]. Thank you for your support!
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.