elderly blind people, audio books, and advocacy organizations

On January 10, Cathy and I begin our 21st year providing services to
older low vision and blind folks. What tons of misinformation I had
as we set out to see our first client back in 1995. After nearly 19
years of working with younger blind adults in both the BEP and Adult
Training Programs, I had no clue regarding the world facing us.
First, older blind people are mostly new to the vision loss
experience. And above all, they are *Old!
Old brings with it a wheel barrel full of other troubles. Hearing is
one of the little inconveniences that interfere with our attempts to
provide assistance in dealing with vision loss. Stamina is a serious
factor, too. Balance. Fear. Self pity. Meddling by well meaning
family and friends. And most feared of all, memory loss. Memory
loss. We chuckle when grandma asks us if we've seen her reading
glasses, and there they are, tucked up in her hair. Or when grandpa
repeats the same story every time he sees us. "Did I ever tell you
about the time I met General Eisenhower?"
"Why no, grandpa. Tell us. I'll bet it was in France around 1944?"
But it's not so much fun when a client calls and asks why that talking
clock you provided them doesn't talk anymore. "Have you checked the
batteries?" you ask. "Batteries? Does it take batteries? You never
told me it takes batteries." Another client tells you they need a
stronger magnifier. They dig out a 3 power, and pass it over to you.
"Where's the 7 power we brought you a couple of months back?" you ask.
"Nope. Never had that one. My daughter bought me this." And of
course it's the magnifier you provided two years ago. Think of
teaching someone with short term memory loss how to operate something
as simple as the digital player. And if you think it's just a matter
of repeating the same steps one at a time, over and over, forget that!
People who are becoming forgetful are also not very task focused.
"First you need to pick up the container that has the book cartridge
in it. See these two little snaps? You need to pop them up like
this....no, that's your TV remote. You just had the book container in
your hand. So let's try starting from the beginning. You see those
two little snaps? Here, let me put your fingers on them. No, my
hands don't feel hot. No, I never had a tattoo on my hand, you must
be seeing a floater. So, do you think you can open up the container
and take the book out? The container. That little box I keep handing
you?"
I recall rejoicing when I received my new Talking Book player. It was
so much simpler to operate than the four track tape players. My error
was in thinking it would be a snap to teach older folks how to use it.
Remember, these are folks who've worked at all sorts of jobs, raised
families, been active in life and had the smarts to be certain they
would be secure in their old age. But just as our bodies wear out, so
do our minds.
In closing, I'll tell you about our sweet little grandma who could not
figure out why the books she received were always the same. We
discovered that even though we'd been over it a dozen times, she was
forgetting to turn over the address label. She placed the books in
her mail box and in a day or two, they came right back to her.
And I remember back in my younger NFB days chanting, "I'm an
Independent Blind Guy!"
Well, Mister independent blind guy, we really are interdependent, and
in our later years we become very, very dependent. And don't you
forget it! Well, you more than likely will.

Carl Jarvis


On 1/5/15, Miriam Vieni <miriamvieni@optonline.net> wrote:
> What did she tell you? They asked people to return the cartridges on which
> the magazines have been placed so that they can re-use them. People always
> returned magazines on cassettes also, for the same reasons. However, when
> the magazines were on flexible discs, they weren't required to return them
> since the discs were inexpensive and couldn't be re-used.
>
> From what you've told me in the past, you don't use the talking book
> program
> and you don't download audio books so you don't have first hand experience
> with any of this. The fact is that the plan was to put books on cartridges
> and send them out just as had been done with cassettes. What prevented this
> from happening quickly and efficiently, was the cut in funds. It's as
> simple
> as that.
>
> If there were more personnel available at the local level, given the
> flexibility of the new technology, the program could be personalized for
> individual older patrons. The waste is that given the constraints of the
> program and the limitations of the patrons, one book is placed on a
> cartridge with a braille and print label giving the title of the book and
> it
> is ssent in a plastic container with a label that can be reversed so the
> container can be returned. But even a 1 gig cartridge could hold 6 or 7
> books, depending on the size of the book. However, you can't do that if
> you're sending one book to a patron and especially because the older
> patrons
> might have difficulty using the bookshelf capability of the player which
> allows one to access several books. So the program is determined by the
> limitations of the patrons and of finances.
>
> Miriam
>
> -----Original Message-----
> From: Blind-Democracy [mailto:blind-democracy-bounces@octothorp.org] On
> Behalf Of ted chittenden
> Sent: Monday, January 05, 2015 3:14 PM
> To: Blind Democracy Discussion List
> Subject: RE: elderly blind people, audio books, and advocacy organizations
>
> Miriam:
> My primary basis were the change in policy regarding NLS magazines when
> they
> switched over to cartridges and what the head of the Arizona regional
> library (she is a nonvoting member of the GCBVI on which I sit) told me.
> --
> Ted Chittenden
>
> Every story has at least two sides if not more.
> ---- Miriam Vieni <miriamvieni@optonline.net> wrote:
> Oh really? Have you purchased a cartridge recently as an individual person
> and are you actually aware of the cost? I have. And are you knowledgeable
> about how much NLS pays for them in bulk? And do you know how much the
> cost
> of cartridges in bulk quantity compares to that of cassettes in bulk
> quantity? I'm just wondering on what basis you've come to your conclusion.
>
> Miriam
>
> -----Original Message-----
> From: Blind-Democracy [mailto:blind-democracy-bounces@octothorp.org] On
> Behalf Of ted chittenden
> Sent: Monday, January 05, 2015 12:58 PM
> To: Blind Democracy Discussion List
> Subject: RE: elderly blind people, audio books, and advocacy organizations
>
> Miriam:
> Alice is correct--it would be a waste of money to have each library have
> one
> copy of each new book on cartridge just waiting for people to ask for that
> book. My understanding is that the cost to the libraries of each individual
> cartridge is a great deal more than for each cassette tape and this is at a
> time when both the states and federal governments are trying to save money,
> not spend it. Whether we like it or not, it is the wealthy people who are
> calling the shots and they are saying "Stop spending so much!"
>
> Fortunately, there is a way to not spend so much and still provide the kind
> of service you're talking about to the group of people you're talking
> about.
> That way is for the libraries to have a number of blank cartridges that
> their staffs or volunteers can download books onto upon request. The books
> could then be shipped to the person requesting them, and when he/she has
> completed reading the book, he/she can send the cartridge back to the
> library for reuse for him/her or another patron with (most likely) a
> different book being downloaded onto it.
>
> And, lest you think I'm being overconscious about cartridge costs, it
> should
> be noted that people who receive magazines on cartridges must return the
> cartridges after they have completed reading the magazines on it before the
> next issues will be sent out.
> --
> Ted Chittenden
>
> Every story has at least two sides if not more.
> ---- Miriam Vieni <miriamvieni@optonline.net> wrote:
> Well, the service model has been to provide audio books by mail to blind
> patrons. In 1962 when I first started using the program, the books were on
> discs and played at 33 1/3 whatever and you sent requests to the library
> which sent them to you. If you read braille, you also could get press
> braille from your library. You could get hand copied braille books from a
> variety of libraries throughout the country. When NLS changed to cassette
> books, they first provided recorder/players to everyone and continued to
> send books, but now on cassettes rather than discs. They then switched from
> recorder/players to players, manufactured specifically for them and they
> changed the speed of the cassettes. Now, they changed to digital format,
> provided everyone who requested one with a digital player, and they send
> books out, usually one to a cartridge, to people who request them. They
> have
> only recently started ssending out the magazines on cartridges. The purpose
> of the program is to provide service to people who need it. Since the
> greatest percentage of blind people are elderly, newly blind people,
> serving
> that sector has always been important. I don't see how wastefulness is
> relevant in that context. Not only do they not all have the capability to
> download books for themselves, they don't all have someone who can do it
> for
> them. I've had both professional and personal experience with this group of
> people in the past and I can tell you that their attitudes and capabilities
> in relation to blindness are very different from those of younger people
> who
> had visual issues for most or all of their lives. I also know sighted
> people
> in their seventies and eighties. Some are very computer savvy. Some can't
> deal with computers at all. But if those people lost most or all of their
> sight, they would not be able to learn how to use a screen reader
> efficiently enough to download books. Many do learn how to enjoy listening
> to, rather than reading books by sight. But for some, even that is very
> hard.
>
> Miriam
>
> ________________________________
>
> From: Blind-Democracy [mailto:blind-democracy-bounces@octothorp.org] On
> Behalf Of Alice Dampman Humel
> Sent: Monday, January 05, 2015 7:06 AM
> To: Blind Democracy Discussion List
> Subject: Re: elderly blind people, audio books, and advocacy organizations
>
>
> But Miriam, wouldn't that be incredibly wasteful to put every single
> digital
> book onto a physical cartridge and have it sitting around somewhere?
> With the technology used to produce the cassettes, I guess it was necessary
> to at least have one physical copy floating around somewhere.
> But now, if someone requests a book, it can be put on a cartridge in a
> manner of seconds and sent out.
> Isn't this the way it's supposed to work?
> And the cartridges can even be reused, rerecorded.
> More than one book can be put on a cartridge if desired.
> And you're right about the machines and the cartridges being much easier to
> handle than the old cassettes with the 4 sides, the track switching, and
> the
> delicate nature of the cassettes.
> Alice
>
> On Jan 4, 2015, at 9:15 PM, Miriam Vieni <miriamvieni@optonline.net> wrote:
>
>
> Ted,
>
> I disagree. It has nothing to do with cassettes . The digital
> players and
> the cartridges on which the digital books are placed are much easier
> for
> older people to use than the cassette books and the players ever
> were. The
> cassettes broke or had fuzzy sound because they were old. The
> players were
> much more complicated and confusing for older people. The new
> technology has
> made it easier for adventitiously elderly blind people. The problem
> is that
> the funds for the project were cut so there hasn't been enough money
> to put
> all of the books which were transferred from analog to digital
> format plus
> all of the new books, on cartridges.
>
> Miriam
>
> -----Original Message-----
> From: Blind-Democracy [mailto:blind-democracy-bounces@octothorp.org]
> On
> Behalf Of ted chittenden
> Sent: Sunday, January 04, 2015 6:37 PM
> To: Blind Democracy Discussion List
> Subject: RE: elderly blind people, audio books, and advocacy
> organizations
>
> Frank:
> While you are correct on the training issue, the lack of cassette
> tapes and
> players to play them on is very much at the center of this problem.
> If
> cassette tapes and players were widely available, you would not have
> this
> problem to begin with because you wouldn't have to train elderly
> people on
> how to use the new equipment.
> --
> Ted Chittenden
>
> Every story has at least two sides if not more.
> ---- Frank Ventura <frank.ventura@littlebreezes.com> wrote:
> Teddles, I don't think the issue is that of cassette tapes
> specifically but
> about the lack of available training and assistance to the newly
> blind,
> especially elders, in using more modern technologies. Here is MA we
> have a
> social rehabilitation program that fills in some of those gaps but
> what
> about the rest of the country?
> Frank
>
> -----Original Message-----
> From: Blind-Democracy [mailto:blind-democracy-bounces@octothorp.org]
> On
> Behalf Of ted chittenden
> Sent: Sunday, January 04, 2015 4:09 PM
> To: Blind Democracy Discussion List
> Subject: RE: elderly blind people, audio books, and advocacy
> organizations
>
> Charlie:
> Miriam's point may be relevant; however, cassette tapes are no
> longer being
> manufactured. And I highly doubt that people who make up just .5% of
> the
> population have enough purchasing power to get those tapes
> manufactured
> again.
> --
> Ted Chittenden
>
> Every story has at least two sides if not more.
> ---- Charles Crawford <CCrawford@RCN.com> wrote:
> Hi Miriam and all,
>
> Your point relative to talking books is well taken and I will have
> to take
> it up with some folks within the library system that I know.
>
> Thanks!
>
> Charlie.
>
>
>
> -----Original Message-----
> From: Blind-Democracy [mailto:blind-democracy-bounces@octothorp.org]
> On
> Behalf Of Miriam Vieni
> Sent: 04 January 2015 13:27
> To: 'Blind Democracy Discussion List'
> Subject: RE: elderly blind people, audio books, and advocacy
> organizations
>
> Charlie,
>
> What I was saying was that neither organization made statements
> about how
> the newly blinded older population was impacted in terms of the
> distribution
> of audio books by NLS. I am very sure that both organizations are
> aware of,
> and sensitive to, the aging of their own members. But the newly
> blinded
> older population is a different group and for many of them, even
> adjusting
> to listening to, rather than reading books, is hard. However, if you
> add to
> this the fact that the numbers of books readily available to them
> has
> decreased, that just makes reading less available and younger blind
> people
> may have difficulty identifying with this group.
>
> Miriam
>
> -----Original Message-----
> From: Blind-Democracy [mailto:blind-democracy-bounces@octothorp.org]
> On
> Behalf Of Charles Crawford
> Sent: Sunday, January 04, 2015 12:47 PM
> To: 'Blind Democracy Discussion List'
> Subject: RE: elderly blind people, audio books, and advocacy
> organizations
>
> Hi Miriam and Bob and all,
>
> I believe Miriam, that you are largely correct in your analysis of
> especially the audio books area, but I am not as convinced with
> respect to
> the ACB and NFB in the matter of blind elders. I believe that it is
> true
> that both organizations have related to congenitally blind and low
> vision
> folks, but I also know that at least ACB and I suspect NFB as well
> have been
> aware of, and sensitive to the ever growing numbers of elders within
> the
> ranks of legally blind persons. This is because of, if for no other
> reason,
> the aging of their own memberships. It is a fair question to ask if
> they
> have properly related to the elder blind, however I would not
> conclude that
> they are insensitive to the phenomena.
>
> HTH.
>
> Charlie Crawford.
>
>
> -----Original Message-----
> From: Blind-Democracy [mailto:blind-democracy-bounces@octothorp.org]
> On
> Behalf Of Miriam Vieni
> Sent: 02 January 2015 17:03
> To: 'Blind Democracy Discussion List'
> Subject: elderly blind people, audio books, and advocacy
> organizations
>
> Bob,
>
> First, the problem is that before we had the BARD site or its
> predecessor,
> all books that were available through NLS, were available on
> cassettes. So
> the assumption was that when NLS turned to a digital format, all
> books
> produced in that format would be made available to people on
> cartridges. But
> everyone who received an NLS digital player, was told in the
> player's
> instructions, that only a small percentage of digital books would be
> put on
> cartridges and they were encouraged to download their own books.
> This is
> fine for congenitally blind people or those who've been blind for a
> long
> time and learned to use the computer. It wasn't fine for newly
> blinded
> elderly people. And it wasn't fine for many elderly people who'd
> been blind
> for a long time but who had never become really comfortable with
> computers.
> I have no idea, at this point, what percentage of the digital books
> have
> been put on cartridges, nor how quickly this is being done. I do
> know that
> in June 2013, when my computer was down, although I could get some
> digital
> books from my library, I couldn't get the really recent ones because
> they
> weren't yet available. My talking book library is in New York City
> and as
> far as I know, they are not downloading books for anyone. It seems
> to me
> that they would have funding similar to your's. But ACB and NFB see
> the
> congenitally blind and people who became blind when they were young
> as their
> major constituency and therefore, as the people they serve. They
> give
> lipservice to serving the elderly, but they aren't really thinking
> about the
> needs of newly blinded elderly people because those people have
> needs and
> perceptions that are so different from those of the blindness
> community.
>
> Miriam
>
> -----Original Message-----
> From: Blind-Democracy [mailto:blind-democracy-bounces@octothorp.org]
> On
> Behalf Of Bob Hachey
> Sent: Friday, January 02, 2015 4:20 PM
> To: 'Blind Democracy Discussion List'
> Subject: RE: All hail free enterprise! $800 for a 20-Mile Ride? 7
> Most
> Outrageous Uber Rip-Offs
>
> Hi Miriam,
> Good points all regarding libertarianism.
> I recall the first time I started downloading BARD books. I was
> pretty
> excited about the new process and the ability to download books at
> will
> whenever I wanted them. But, at the same time, I also realized that
> those
> who are not computer savvy could get left behind if the new system
> was not
> implemented properly. It is indeed most unfortunate that not all
> regional
> libraries will put books onto the cartridges upon request as is done
> here in
> Massachusetts. Perhaps what is needed is for both ACB and NfB to
> make some
> noise about making it a requirement that all regional libraries
> provide this
> service, at a minimum for all patrons upon request for whom an email
> address
> is not present in the NLS database. I've discussed this briefly with
> Kim
> Charlson and she agrees but is concerned that some state NLS
> providers are
> not as well-funded as others. She pointed out to me that here in
> Massachusetts, we have better funding than others.
> AS much as I love new technologies, I try my best to remember those
> who do
> not have access to the internet and others who do have access but
> for whom
> learning new technologies does not come easily.
> Here in Massachusetts, the NLS libraries have offered trainings on
> the NLS
> site as well as how to manage the books and put them onto the NLS
> and
> portable players. One thing I have noticed. Increasingly, folks who
> are
> elderly today, (that is, folks under the age of 75 are more likely
> to be
> comfortable with the use of the internet and the PC. More and more
> senior
> centers are offering computers for use by patrons as well as
> training in the
> use of those computers.
> Like many other things in life, we seem to take one step forward and
> sometimes two steps backwards.
> I agree with you that both ACB and NfB need to be vigilant and fight
> harder
> to see that no one who is eligible for NLS services gets left behind
> and
> forced to live on the wrong side of the digital divide.
> Bob Hachey
>
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