[Colorado-Talk] The Brille Monitor, November, 2021

[Curtis Chong]

____________________________________________________________________________
___


Braille Monitor


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

telephone: 410-659-9314
email address: nfb at nfb.org <mailto:nfb at nfb.org> 
website address: http://www.nfb.org <http://www.nfb.org/> 
NFBnet.org: http://www.nfbnet.org <http://www.nfbnet.org/> 
NFB-NEWSLINE® information: 866-504-7300
Like us on Facebook: Facebook.com/nationalfederationoftheblind
<http://www.facebook.com/nationalfederationoftheblind> 
Follow us on Twitter: @NFB_Voice
Watch and share our videos: YouTube.com/NationsBlind
<http://www.youtube.com/NationsBlind> 

Letters to the President, address changes, subscription requests, and orders
for NFB literature should be sent to the national office. Articles for the
Monitor and letters to the editor may also be sent to the national office or
may be emailed to gwunder at nfb.org <mailto:gwunder at nfb.org> .

Monitor subscriptions cost the Federation about forty dollars per year.
Members are invited,
and nonmembers are requested, to cover the subscription cost. Donations
should be
made payable to National Federation of the Blind and sent to:

National Federation of the Blind
200 East Wells Street at Jernigan Place
Baltimore, Maryland 21230-4998

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.

ISSN 0006-8829

  _____  

Each issue is recorded on a thumb drive (also called a memory stick or USB
flash drive). You can read this audio edition using a computer or a National
Library Service digital player. The NLS machine has two slots--the familiar
book-cartridge slot just above the retractable carrying handle and a second
slot located on the right side near the headphone jack. This smaller slot is
used to play thumb drives. Remove the protective rubber pad covering this
slot and insert the thumb drive. It will insert only in one position. If you
encounter resistance, flip the drive over and try again. (Note: If the
cartridge slot is not empty when you insert the thumb drive, the digital
player will ignore the thumb drive.) Once the thumb drive is inserted, the
player buttons will function as usual for reading digital materials. If you
remove the thumb drive to use the player for cartridges, when you insert it
again, reading should resume at the point you stopped.

You can transfer the recording of each issue from the thumb drive to your
computer or preserve it on the thumb drive. However, because thumb drives
can be used hundreds of times, we would appreciate their return in order to
stretch our funding. Please use the return envelope enclosed with the drive
when you return the device.

  _____  


Contents


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

Monitor Miniatures

Copyright 2021 by the National Federation of the Blind


Raising the Bar, Expanding the Possibilities


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.


NY Reaches Agreement with DOJ Over Vaccine Access for Blind People


by Lauren Weber and Hannah Recht

OCTOBER 8, 2021
https://khn.org/news/article/ny-reaches-agreement-with-doj-over-vaccine-acce
ss-for-blind-people/
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.


We are Federationists Too


>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  <http://online.rainn.org/>
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.


Stronger Together: How the Organized Blind Movement Benefits from the Global
Advancement of the United Nations CRPD


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.


2022 Washington Seminar


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
<https://nfb.org/washington-seminar> nfb.org/washington-seminar.


Sleep in Blind Children, a Mystery


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.

*	Create a routine
*	Set a bedtime
*	Limit screen time
*	Make sure he gets plenty of exercise during the day so he's
physically tired.
*	No caffeine, including chocolate, for at least six hours before
bedtime.
*	Set up the bedroom for sleep: cool temperature, blackout curtains,
quiet or white noise.
*	Bedtime routine: bath, bedtime story, music, turn out the lights.
*	Consistency.

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=IwAR089Z
hk3NK0qmmh-P0Ntnd_WBTIxsFNRwRc4u05DupCxgWFPFLDC5sq0N8


Recommended Resources:


National Institute for Child Health and Human Development on Sleep
https://www.nichd.nih.gov/health/topics/sleep

Centers for Disease Control: Do your children get enough sleep?
https://www.cdc.gov/chronicdisease/resources/infographic/children-sleep.htm

Mayo Clinic Health System: Is your child getting enough sleep?
https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/is
-your-child-getting-enough-sleep

HealthyChildren.org, A website of the American Academy of Pediatrics:
Healthy Sleep Habits
https://www.healthychildren.org/English/healthy-living/sleep/Pages/healthy-s
leep-habits-how-many-hours-does-your-child-need.aspx

American Family Physician: Common Sleep Disorders in Children
https://www.aafp.org/afp/2014/0301/p368.html


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

>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: DrMaurer1 at verizon.net <mailto:DrMaurer1 at verizon.net> 
Email Susan Gashel: susangashel at gmail.com <mailto:susangashel at gmail.com> 
Email James Gashel: jgashel0923 at gmail.com <mailto:jgashel0923 at gmail.com> 
Email our national office: SocialSecurityInfo at nfb.org
<mailto:SocialSecurityInfo at nfb.org> 


You’ve Got Mail, but it May be Late


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.


What is happening to my mail?


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.


Why is this happening?


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.


How will this affect me?


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.


What can I do about this change?


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.


Celebrate the Holiday Heroes Who Are Leading the National Federation of the
Blind


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.

*	Visit nfb.org/donate <https://nfb.org/donate>  to give online.
*	To mail a gift, simply send a check made out to the National
Federation of the Blind to 200 East Wells Street at Jernigan Place,
Baltimore, MD 21230.
*	If you wish to contribute by phone using your credit card, please
call 410-659-9314, extension 2282.

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.


What One Determined, Motivated, and Caring Woman can Achieve: The Life of
Doris Willoughby


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.


You Can Make a Difference


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:

*	Give blind children the gift of literacy through Braille.
*	Promote independent travel by providing free, long white canes to
blind people in need.
*	Develop dynamic educational projects and programs to show blind
youth that science and math careers are within their reach.
*	Deliver hundreds of accessible newspapers and magazines to provide
blind people the essential information necessary to be actively involved in
their communities.
*	Offer aids and appliances that help seniors losing vision maintain
their independence.


Plan to Leave a Legacy


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.


Fixed Sum of Assets


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.


Percentage of Assets


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.


Payable on Death (POD) Account


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.


Will or Trust


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
<https://www.nfb.org/get-involved/ways-give/planned-giving>  or call
410-659-9314, extension 2422, for more information.

Together with love, hope, determination, and your support, we will continue
to transform dreams into reality.

Ways to Contribute Now

Since the start of 2019, the NFB:

*	Distributed over eight thousand canes to blind people across the
United States, empowering them to travel safely and independently throughout
their communities.
*	Delivered audio newspaper and magazine services to 124,022
subscribers, providing free access to over five hundred local, national, and
international publications.
*	Gave over 900 Braille-writing slates and styluses free of charge to
blind users.
*	Transformed our Braille Enrichment for Literacy and Learning®
Academies into in-home editions offered to blind youth throughout the United
States.

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


Vehicle Donation Program


The NFB 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 Donation


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
<https://www.nfb.org/get-involved/ways-give>  for more information. 


Pre-Authorized Contribution


Through the Pre-Authorized Contribution (PAC) program, supporters sustain
the efforts of the National Federation of the Blind by making recurring
monthly donations by direct 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 <https://www.nfb.org/pac>  online
(https://nfb.formstack.com/forms/pac).

If you have questions about giving, please send an email to outreach at nfb.org
<mailto:outreach at nfb.org>  or call 410-659-9314, extension 2422.


Independence Market Corner


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.


PRODUCTS OF THE MONTH


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


SALE PRODUCTS


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 independencemarket at nfb.org
<mailto:independencemarket at nfb.org>  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.


Accessibility Tour through the National Peace and Justice Museum Memorial


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.


Monitor Miniatures


News from the Federation Family


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 <http://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.


In Brief


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 hmacleod at nbp.org
<mailto:hmacleod at nbp.org> . Thank you for your support!


NFB Pledge


I pledge to participate actively in the efforts of the National Federation
of the Blind to achieve equality, opportunity, and security for the blind;
to support the policies and programs of the Federation; and to abide by its
constitution.

 

 

-------------- next part --------------
An HTML attachment was scrubbed...
URL: <http://nfbnet.org/pipermail/colorado-talk_nfbnet.org/attachments/20211101/c4615b31/attachment.html>