Episode Transcript
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(00:14):
Welcome to St. Louis in tune,and thank you for joining us for
fresh perspectives on issuesand events with experts, community
leaders and everyday peoplewho make a difference in shaping
our society and world. I'mArnold Stricker along with co host
Mark Langston who is onassignment. And folks, we're glad
that you joined us today. Wewant to thank our sponsor, Better
Rate Mortgage, for theirsupport of the show. You can listen
(00:35):
to previousshows@stlintune.com please help us
continue to grow by leaving areview on our website, Apple Podcast
or your preferred podcastplatform. Our guest today is Andrew
Leland. He's a writer, audioproducer, editor and teacher. He
is the has been the finalistfor the Pulitzer Prize. His book
(00:55):
that we're going to talk abouttoday, the country of the A Memoir
at the End of Sight, has beennamed as one of the best books of
the year by the New Yorker,the Washington post, the Atlantic,
NPR, Publishers Weekly, andLitHub. He's going to be speaking
at the Carl and Helene MirwitzPerforming Arts center at the Millstone
campus November 2nd at 7pmwe'll talk about that a little bit
(01:18):
later on in our interview.Andrew welcome to St. Louis in Tune.
Thank you so much for having me.
Now, you've been a writer. Youare a writer, audio producer, editor,
teacher, a bachelor's degreein English Language and Literature
from Oberlin and a master'sdegree from the good old School of
Journalism at the Universityof Missouri. What was the impetus
(01:38):
behind this particular book? Iknow you are going through blindness
and why did you decide towrite the book during this phase
of you going through blindness?
I think that the usual reasonpeople there's many reasons why someone
might write a book, but Ithink a common one is that do you
want to read a book thatdoesn't exist in the world? And I
(02:02):
was starting to hit a point inmy retinal degeneration that felt
new and different and so thatthe disease I have is called retinitis
pigmentosa, or rp, and it isvery slow. It operates in different
speeds in different ways fordifferent people. But I have a kind
of a classic version of it,which means it's a very slow degeneration
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of my retinol cells and myretina. And I have a basically tunnel
vision, increasing tunnelvision over the years and then also
night blindness. And then asthings degrade, my central vision
starts to degrade more, too.When I was first diagnosed, even
though I had this prognosis ofeventual blindness, it took decades
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for it to really catch up withme And I went through various milestones
where I would realize itwasn't really safe to drive at night.
And then maybe not safe todrive during the day, but really
even all through that, allthrough my 20s and into even my 30s,
it just didn't feel like a bigpart of my life, like a really important
aspect of my experience. Itwas a thing that I thought about,
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but I didn't really intrudevery much. I didn't use a white cane.
I didn't use any assistivetechnology. I just muddled through.
And then it started tointrude, and it started to approach
my mid to late 30s, and I justnoticed I was missing more things.
I was stumbling over things,and driving felt unsafe, and even
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bicycling felt unsafe. Andthen once I started using a white
cane, that was the reallightning rod moment, because suddenly
overnight, I became blind.Even though my vision didn't change,
suddenly my social experienceof blindness changed. And everybody's
kind of treating medifferently, from strangers to family
members. And that experiencefelt both difficult and troubling,
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but also really fascinatingand opened up all of these philosophical
questions about how everythingfrom how people treat disability
and how people conceive ofdisability, and, like, what perception
means and what reading means.And so as those questions started
to pile up, it was clear to methat there was a lot of material
(04:17):
there and it was. It wouldsupport a book. And I started small.
I started just with writingshort essays or giving talks. And
then it really just was thisaccumulative snowball feeling. Wow,
okay, there's enough here tosustain a book. So that's when we
dove into the project.
Now, you mentioned that thishad been something that was an ongoing
thing that you knew was goingto happen. Is this something that
is hereditary or what's the.Have they determined what the cause
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of this is?
Yeah, a couple years ago, Idid get a genetic test. So RP refers
to a kind of wholeconstellation of different inherited
genetic mutations. There's anumber of different mutations that
can cause rpm. Sometimes itjust can be, like, spontaneous, like
a birth defect. So RP is. Ithink a lot of diseases work that
(05:02):
way. Right. Like, it's not onespecific, like one particular gene
cause, and it's a wholeumbrella. And then I found out my
particular mutation is calledMauk 1. It's common among Jews. Shout
out to the JCC, where I'll bespeaking on Sunday and Jews will
be. But yeah, so it's like a.It's a particular Jewish flavor of
rp, but it's it's equalopportunity. I'm friends with RP
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guys who are Muslim andChristian and atheist and it takes
all colors.
So it's, it knows no boundaries.
Indeed.
Now you mentioned that I, Iwant to delve into when you started
using the white cane, thatyour friends and family and other
people approached you or dealtwith you differently. How did they
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deal with you differently?Because I think this impacts people
who have a disability likethat or maybe deafness or some other
kind of physical, physicalimpairment. How did that impact you?
And talk about that.
Yeah, yeah. I think it reallycalls to mind the idea of passing
and which I think is mostcommonly thought of in racial terms,
(06:07):
like Nella Larson's greatnovel Passing about light skinned
black women passing as white,which is a whole separate set of
valences, a separate set ofideas around that. But there is a
relationship, I think in, inso far as just as blackness heavily
stigmatized and particularlywas heavily stigmatized and still
is anti black sentiment ishuge. There is a different related
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sense of disability stigmathat persists to this day. It's interesting
to think about it in racialterms because it's very different.
And I wrestle with that in thebook. I have a tremendous amount
of privilege, including racialprivilege. But there is a way that
like the more disabled Ibecome, the more I realize that there
is a stigma. But it'sdifferent than racial stigma in some
ways because racial stigma,there's a real animus, right? There's
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like when you think aboutracism, it's like anti blackness
people, it's, it's extremelyset against a certain characteristic.
Whereas with disabilitythere's this overlay of pity, an
overlay of charity, that maskthe very real disdain and fear and
a lot of this of similarnegative and yet anti styled sentiments.
(07:09):
And so I started to feel thatin a lot of different ways, in terms
of strangers, people intrudinginto my personal space in a way that
often was well intentioned.But then as soon as like the bubble
of that well intentioned, thesheen, the veneer of that, those
good intentions get puncturedby my waving it off and saying I'm
good, it'll immediately pivotto vitriol and anger and like nastiness
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or just people, a big oneamong disability is this fear of
fakers. And so I had this guy,I was walking down the street with
my cane. I still have centralvision, I still have useful vision
that I can use to see, but Ialso still need the cane to avoid
all kinds of mayhem anddestruction. And I made eye contact
with him, this is a scene inthe book. And we lock eyes for a
(07:51):
second, or he just goes. Youcan see as though I'm, like, carrying
my cane to get a free handoutor something. And that's so common.
Going back to really, like,the origins of disability history,
you've seen this anxiety thatpeople have that they think people
are just trying to pull oneover on you. And then, yeah, in terms
of, like, my friends andfamily, this is different dynamic,
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but still a really palpableshift. Some people extremely awkward
not knowing how to be aroundme or being unsure, just like this
awkward wedge that comesbetween us and then. And other people
who just delighted me in theirability to ignore it in the way that
I want it to be ignored and.But also not ignore them, because
when I don't. And it's. It canbe a very subtle thing. And one.
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One of the first revelations Ihad was that I couldn't blame anybody
else and I couldn't reallyjudge anybody else about how they
treat disability until I hadrealized how little I had really
considered it. And there was alot of internalized ableism and having
to unpack my own fears beforeI could start to talk to other people
about how they wereapproaching it.
So what do you think is thebiggest misconception, conception
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that people have ofindividuals who are blind? Is it,
how do I help?
Or.
Yeah, to what extent are youblind and what can you see? Or what
do you think it is?
I think that the biggestmisconception is around ability itself.
And I think that blindness,like a lot of disability, becomes
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this kind of totalizing thing.One example of it is that people
will often speak really loudlyto blind people. I can't tell you
how many times I've heardblind people be like, it's my eyes,
actually, not my ears,impairment. And I think that that
speaks to just the sense of,this person is a child, right? Or
this person is somehow. It'sjust this, like, snowball effect
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again of impairment. And youalso assume that they're not as intelligent,
Right. Or that almost everyday people ask me if I can. If I
want to take the elevatorinstead of the stairs. And there's
some logic to it, like, theyhaven't thought it through. But I
think if you just. If youthink about it for a second, there's
no problem with the stairs. Ican lock the sign. I can hold onto
the railing. Like, my canehelps me feel the stairs. So I'm
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not angry at people forsuggesting that. But I think if you're
asking about Misconceptions.It's just this, what one blindness
advocacy group likes to calllow expectations. And there's just
abysmally low expectations forwhat a blind person is capable of.
And another example is you seeit on online a lot where there's
a lot of blind people postingcomments to YouTube or posting comments
in message boards. And again,people are like, dude, if you're
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blind, how are you? How areyou even doing this? Is somebody
writing it for you? And again,it's understandable if you don't
know what a screen reader islike. You would be confused about
that. But it doesn't take thatmuch effort to realize that black
people are more than capableof doing all kinds of things.
When you were mentioningwhether I should take the stairs
or take the elevator, whatcame to mind was, no, I think I'll
fly.
(10:45):
Yes.
Yeah, yeah, I appreciate that.Because people don't really look
into those worlds ofindividuals who are disabled because
they have the faculties aboutthem and don't really understand
that it doesn't have anythingto do with intelligence or, you know,
the fact that you are blindand I need to speak louder. It doesn't
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make sense. It's like speakingloudly to somebody who speaks another
language.
It, it's the same thing.
It gets into this. You talkeda little bit about technology and
there was even in the deafworld there was this ebb and flow
and fight between sign and lipreading. And less today than there
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was in the world of sight orthe non sighted. Is there that much
like back and forth betweenbraille and technology? I know back
in the day when technologywasn't big, you had to use braille.
Now what is the emphasis?
(11:49):
Yeah, so there was a moment inthe 1970s when those circuit TV,
CCTV technology started to getcheaper and more widely available.
And so you had the first videomagnifiers for low vision students
and adults. And you could takea book and stick it on your table
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and you have this machine thesize of like an old school PC, but
it could. Or like a big screenTV and it would blow up the text
on your book. And so you couldget work done that way. And then
around, and then a littlewhile later you had increasing digital
breakthroughs with recordedaudio, synthetic speech, and then
all the way up to the iPadwhere you can now today have a blind
(12:34):
student. And with enoughpreparation and the right, as long
as they're the textbookmanufacturers are doing the right
thing, you'll get all of theirmaterial digitally and they can have
a synthetic voice and a screenreader, reading it out loud. And
as a result of that dynamic,you have a lot of teachers, the visually
impaired, TVIs and, and otherswho work with blind people on matters
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of education andrehabilitation, making the argument
that you just rehearsed alittle bit, which is that in the
era of an iPad that can, like,have anything in the Kindle store,
for instance, any book in theKindle store is essentially accessible
to a blind person. Now, do youreally need braille? And there are
plenty of people who don'tread braille. It's especially difficult
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to get up to a good readingspeed as an adult learner, as I found.
But a lot of blind people makethe argument that there's no true
literacy without braille. Andone. One thing that they mean by
that is that if you only areexperiencing text sonically, you're
not accessing the morphologyof the words, like the actual spelling
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of the words. And so it's onething for me as somebody who I can
still see magnified print, andI've been a visual reader my whole
life, if I lose the rest of myvision tomorrow and then just never
learn braille, I'm going toremember that British spellings have
a U in it, right? Or that,like, pseudoscience starts with a
P and you can even argue howimportant even is that. But I think,
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especially if you're talkingabout a blind student, there is a
lot of information in thespellings of words. And then and
beyond, even just like knowinghow words are spelled, there is something
about reading a word tactilelythat is much closer to reading it
visually in terms of kind ofjust getting a sense of the structure
of a sentence or structure ofa word or structure of a paragraph
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that is so important. As awriter, I care really deeply about
close reading and language andhow it works. And so I'm actually
convinced that braille, Idon't demand, I can't demand or even
suggest that every blindperson learn braille. But I think
that it's something thatreally needs a lot of support and
emphasis and funding andcelebration. And it's a really important
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part of a blind person'stoolkit, even in the era of all of
this, to the old technology.And by the way, braille is itself
a technology, just as anyprint is a technology and readers
are technology. But there is areally exciting movement in technology
with braille now where youhave these refreshable braille displays
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that are imagined, like agimbal or an E reader, where you
hit the next button and thesort of Ink recapitulates itself
into a new page of text.There's braille displays that do
the same thing. And so you canreally leverage all of the access
to accessible textual materialwith braille. And it's like the best
of both worlds. And nowthere's even more exciting stuff
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happening with full pagebraille displays where you can actually
have imagining iPad but withrefreshable braille that promises
incredible advances fortactile graphics. So not to mention
just more engagement with text.
You mentioned the tactilebecause I know there is a thought
out there that people who areblind, gee, their tactile sense becomes
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a little better, their hearingbecomes a little bit better. Misconception.
What is that?
Yeah, that's a common one.It's a misconception insofar as if
you and I both took hearingtests. Like I'm not going to do better
on the hearing test and anaudiologist's office because I'm
blind. What's not amisconception is that blind people,
(16:04):
for obvious reasons, rely moreon hearing and touch and so are more
attuned to it. And so there'sa, there's a, an anecdote I heard
from a blind guy where he wasstanding outside of a bar with his
friends and they were allwhatever, having a cigarette and
he was the first one to noticethat the cab had pulled up. Is that
because his hearing is betteror because like he is focusing more
(16:25):
on what is happening in hishearing, in the field of his hearing?
And it's the latter, but it'seasily mistaken for the farmer.
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an equal housing lender. Now,how do you define blindness? There
is a definition of blindnessby Kenneth Jernigan and he is known
(17:10):
for the National Federation ofthe Blind leading that for a long
period of time. And for somepeople, they think you're, you totally
can't see. You're either Blindfrom birth or you lose your sight
along life, and there's somedifficulties and differences there
in the definition and whatpeople perceive who are just, who
are sighted, people that livein the world. How do you define blindness?
(17:33):
Yeah, I'm definitelyinfluenced by the National Federation
of the Blind, the nfp. And Ithink one thing that's really important
and useful about theirdefinition, which is more capacious
than you might think, I thinkthe way they define it currently
is that if you rely on anassistive technology, whether it
be a guide dog or a white caneor one of those screen magnifiers
(17:54):
I described, or a screenreader on your computer, if any of
those things is necessary foryou to get through your day, get
through the day of school orget through a day of your job, or
just live a life that you wantto live, then you can be in the club,
then you're blind. And I thinkthat is such an important definition
because of this reallypowerful impulse towards denial.
(18:20):
It's just, you just again andagain and it actually shockingly
has very little to do with howmuch vision you have. Because there's
people who are totally blindwho can be in denial, and then there's
folks in my camp with the sortof low vision crew where it's very
common to be in denial. But inboth cases, it's incredibly dangerous,
both emotionally, spirituallyand physically to be to live in denial
of your blindness. But becauseof that stigma we were talking about,
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it's also, there's anincredibly powerful pull towards
Denal Arrow and just saying,you know what, I'm not, I don't need
this king, like, and makeeverybody choose to be funny with
it. It's going to make itawkward. I'm just gonna, I'm just
gonna go without it. And thenyou can imagine the, the real problem
with that. Like I said,there's, it's not just about the
physical risk of like cruisingoutside without your cane. There's
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also just like a sort ofspiritual death that can happen.
You just, you can't live afull life with it. So I think that's
why it's so important to say,you know what, even if you can see
when the light change to red,but if you're still like needing
a magnifying glass to read anyprint at all, or if you're still
like, need that white cane toavoid tripping over a fire hydrant,
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yes, you can call yourselfblind. And the power of that is that
then you can accept that, youknow what, it's not weird or Bad
that I am a white cane. Like,I'm blind. Of course I need a white
cane. And there's just, like,a liberation that comes with that.
That has been one of the mostpowerful, powerfully transformative
experiences of my adult life.Is coming to accept that and realizing
how much more I can do afteraccepting it than I could before
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when I was keeping it very compartmentalized.
Talk about that acceptanceprocess, because it's a recalibrating
of who you are and what youcan and cannot do. It's much an elderly
person who can no longer drivebecause they shouldn't be behind
the wheel because they'regoing to put themselves and other
people in danger. Or verysimilar to someone who might have
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a mental illness who says, Ifeel good now and I'm going to stop
taking my medication. Thingslike that. How did you recalibrate?
How did you get to that point?
Yeah, really, the process ofreporting the book was a process
of talking to as manydifferent blind people as I could
and as many different arenasas I could. And the way that my book
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is structured, it's arounddifferent aspects of this experience
that I encountered. There's achapter about masculinity and gender
and the blindness affectsthese sort of gender roles, and a
chapter on technology and achapter on identity politics and
politics more broadly. Andeach of those, I got to meet with
all kinds of different blindpeople who are super engaged in the
(20:51):
debates surrounding thoseideas. And after a while, I started
to. I didn't agree witheverybody. There were some people
who really rubbed me the wrongway. But even that was useful information
was like, okay, I'm like,entering this big family of blind
people. And some of them,like, any family. Maybe I'll see
you at Thanksgiving. But it'snot. And then other people who are
like, I love dearly and I nowcount among my closest friends and
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who have taught me so much andcontinue to teach me so much. And
I think a lot of that processhas come from finding blind role
models. And. And I thinkthey're. One of the tragedies in
a lot of blind people's livesis the tragedies of blindness. It's
just that they only have beenexposed to people who have that exceedingly
low expectation view ofblindness. And so then they internalize
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it. And they never find ablind person who can say, you know
what? Crab your cane is goingto go get a burger, and we're out.
There's no sighted peopleneeded. We're just going to. I know
where the bus stop is. I Knowwhere the burger place is, let's
go. And that experience is soimportant. And too many blind people
don't get it just because theyend up getting pigeon bones in the
world. Without folks whounderstand how expansive of an experience
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blindness can be.
Or crossing the street likeyou were going to pick up your son.
And the woman at the lightsaid, okay, we're going to walk.
We're going to cross now. Andyes, we are.
Yeah, yeah, yeah. And a lot ofthat confidence that I got in crossing
the street like that came frommy time at a lioness training center.
The one I visited was inLittleton, Colorado, New greater
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Denver called the Coloradocenter for the Blind. And they, they,
it's a school, but instead ofphysics and Latin and algebra, they
teach you orientation andmobility, walking around the city
independently. And they teachyou cooking skills of how to fry
an egg on a gas stove. Andeverybody wears vivid clothing, sleep
shoes where it's nine to fiveevery day, so you see nothing, no
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matter if you're low visionlike me or somebody who's totally
blind, everybody's on the sameplaying field there. And there's
a braille class and a techclass, and a couple weeks in a center
like that, you get a lot ofconfidence in looking at life as
a blind person. That's a good one.
I can imagine being in a placelike that has individuals who are
in a variety of blindness andthey are learning techniques. And
(23:02):
like you said, there's somepeople I really got a lot of good
information from. I. Some Igot bad information from, or I'll
do that or I won't do that.And how long were you there at Eden
Littleton?
The program is supposed to benine months. And so I cheated a little
bit. And I went and did likethe journalists crash course. Like,
I don't think they generallylet people come for just a couple
(23:24):
weeks. But I only went for afew weeks because I just. Part of
it was during COVID and I was.I have a book deadline at the. Right.
And the other part, I wasexpanding the next year for New Yorker
magazine. And so I went backfor an additional two weeks. But
I think ideally I would havegone for nine months. I think there's
still so much more for me to learn.
So other than the white caneor learning how to fry an egg on
(23:48):
a gas stove or things likethat, what are some of the other
what I would call dailyintricacies that someone has to reprogram
themselves for?
Yeah, I mean, blind peoplelove their technology. And one of
the reasons for that is thatif you think about, like, where the
barriers are around blindness,it's information, right? Because
(24:10):
so much of information isvisual, whether it's like, street
signs or books or videos orall that stuff. So I think a big
one for me and for every blindperson is figuring out your workflow
around reading the news,reading the book, reading books you
want to read, depending onwhat your work is like. For me, I'm
a professor of writing andjournalism, and how am I going to
(24:33):
teach my class? How am I goingto project stuff on the screen? And
all that stuff is possible,but it definitely takes some computer
knowledge. And one thing thatreally struck me in researching my
book was just how every blindperson, to some degree or another,
ends up becoming, like, acomputer hacker or at least like
a computer enthusiast. Andthere's just, like, a level. We live
(24:53):
in an age when more peoplethan ever before have knowledge of
how software works. But, man,blind people are overrepresented
in that world. If you just. Ifyou hang out on these news groups
or listservs or differentonline meetups, even, like, blind
people whom you would thinkwould have no reason to be geeking
out over multiple operatingsystems and running beta tests and
(25:14):
different software, like,they're doing it. And the reason
is that they have to, becausesoftware is constantly breaking and
is inaccessible to blindpeople. And it's really. We don't
have an option, Most blindpeople don't have an option of just
saying, oh, I'll try adifferent tool here. Because often
a stream mirror is only goingto work with one type of program,
and they push an update and itbreaks. And so blind people really
(25:34):
are hackers.
I imagine you were reallypretty pleased when you were a finalist
for the 2024 Pulitzer and the memoir.
I was, yeah. It was awesome.
That it's your journey, andyour journey continues. Is there
going to be a second part tothis or.
(25:56):
Another book you asked? Ithink so. I'm still. I'm at the point
now where I only want to writea book if it in something that I
feel like I have to do becauseI don't know. I've read enough books
out there that are just. Theyfeel like they're written because
somebody felt like they shouldwrite a book, and I don't want to
(26:17):
do that. But also, I feel likeI just wait until I have this, like,
burning desire, like, I haveto write it like I did for this book.
I might be waiting a very longtime. So I'm trying to split the
difference between what is,like, the existential demand to write
a book. And what is just mecontriting something because I want
to continue calling myself awriter. But in honesty, that writing
(26:37):
this book, it opened up a lotof doors onto ideas that I explored
to the fullest that I couldand the constraints of my first book.
But I do feel like there's alot more about disability and blindness
and accessibility that I stillwant to explore. Give me a couple
years, but I would like towrite another one.
Do people follow you on socialmedia and asking like, okay, where
(26:57):
are you at with this now? Orother blind people or other people
going through similarsituation that you have and seeking
some advice or askinginquiring about how you are dealing
with it?
Yeah, for sure I'm not thathard to find online and that, yeah,
that's been a super cool partof this process. It's just like this
long tail of readers who thebook came out in the summer of 2023
(27:21):
and I'm still every weekhearing from folks who sometimes
it's like a blind person,sometimes it's somebody who like
just got diagnosed, sometimesit's somebody who's a relative of
a blind person or I've heardbeautiful stories of people's memories
of their grandparents orparents or siblings. And yeah, I
feel like, you know, my nameis now out there attached to this
(27:41):
book and as a result like myemail address is on my website and
I just, I love gettingmessages from folks.
We've been talking to AndrewLeland. He's the author of the country
of the A Memoir at the End ofSight and he's going to be at the
Carl and Helene MirowitzPerforming Arts center on the Millstone
campus. And that will beNovember 2nd at 7:00pm you can get
(28:03):
more information atjccstl.com, jccstl.com Andrew, thank
you very much for talking tous on St. Louis in Tune today.
Oh, my pleasure. This is asuper great conversation and I'm
excited to return to Missouri.
That's all for this hour.Thank you for listening. If you've
enjoyed this episode, you canlisten to additional shows at STL
(28:26):
and consider leaving a reviewon our website, Apple Podcasts, podchaser,
or your preferred podcastplatform. Your feedback helps us
reach more listeners andcontinue to grow. I want to thank
Bob Berthiselle for our thememusic, our sponsor, Better Rate Mortgage,
our guests Andrew Leland andco host Mark Langston. And we thank
you folks for being a part ofour community of curious minds. St.
(28:47):
Louis in tune is a productionof Motif Media Group and the US Radio
Network. Remember to keepseeking, keep learning, walk worthy
and let your light shine. ForSt. Louis in Tune, I'm Arnold Stricker.
(30:41):
It.