What losing my vision taught me about access Luis Perez
“Turn to the light.”
That is the Quaker expression
that is the motto of the high school
that I attended.
Now as a high school student,
that expression didn’t have
that much meaning to me.
It would become a lot more
meaningful years later,
when as an adult, after
a series of car accidents,
I was diagnosed with
visual impairment.
I have a condition known as
retinis pigmentosa, or RP for short.
the easiest way that I
can explain RP to you,
is to take you
inside my eyes.
This is a photo that was recently taken
during one of my eye exams.
Those dots that you see,
near the center of my eyes,
those are the areas of my eyes
where the photo-receptor
cells have died off.
That’s my blind spot where I can no
longer see.
With retinitis pigmentosa
you start to lose your vision
from the outside in,
until some day I could
be completely blind.
Today, I have about 7 to 8
degrees of central vision left.
Now to give you a sense of what it’s like
to see with retinitis pigmentosa,
we’re going to do a quick experiment.
What I want you to do,
is to take your hands,
make two small circles,
and then look through them.
That’s what it’s like to see
without peripheral vision.
Now, having retinitis pigmentosa
can actually come in handy sometimes.
Right now would be
one of those times.
(laughter)
But you know, having
retinitis pigmentosa,
it’s not just about what is
happening to my eyes.
It’s about a lived
experience.
And so I want to share that
experience with you,
but in a slightly
different way.
I want to share with you
a poem that I wrote
called “Entre” or “Between”.
What this poem is about,
is about my experience
as a person that lives
between and betwixt.
As a person with a visual impairment,
I’m neither fully sighted,
nor fully blind.
I live between worlds.
As an immigrant from
the Dominican Republic,
as a person of color,
I also live between worlds.
Now, schools often want
to assign us to a category,
they want to
give us a label.
How much richer
would education be
if we recognized that
every learner is unique,
and has a complex identity,
that we should celebrate and
incorporate into learning.
Now, today I’m very comfortable in my
own skin as a person with a disability.
But that wasn’t
always the case.
When I was first diagnosed
with my visual impairment,
I actually went into a
long depression,
what I consider the
darkest days of my life.
So how was it that I was able to step
out of the shadows and turn to the light?
Well, there were a few
things that helped me.
The first, of course, was family,
especially my daughter.
She’s the reason why
I’m here today.
Wanting to be there for her,
wanting to be a good role model,
encouraged me
to get help.
And she’s made me
a better person.
When I was first diagnosed
with my visual impairment,
I wasn’t sure if I would get
to see that day, but just this spring,
I was able to see her
graduate from high school.
And not to long ago, I got to move her in
to the dorm for her first year of college.
And as a person of Dominican-
Filipino descent,
she also lives between worlds.
And I’ve wanted to be a good role model
for her in that area of her life, as well.
The other thing that helped me step
out of the shadows and turn to the light,
was meeting Alex and
discovering assistive technology.
One day, by chance, I was
setting up a new computer,
when I discovered this feature called
“Voice Over”, which is a screen reader.
I turned it on, and
I heard this:
“The Voice Over quick start.
In this quick start, you’ll learn
Voice Over basics as well as important
Voice Over commands to help you navigate
on your Mac, and use apps.”
As you probably guessed,
Alex is not a person.
It’s the synthesized speech that runs
with the voice over screen reader,
on any Mac or any iOS device
such as your iPhone or your iPad.
Now Alex didn’t just speak to
my ears, it spoke to my heart.
What was more important than the high
quality of the voice,
was the message that the computer
communicated to me.
It was a message of hope.
It was a message that said,
no matter what happens,
even if you completely lose your
vision, everything is going to be ok.
And that’s my challenge to you.
Above all, focus on creating those
magical moments for your learners.
Meeting Alex was that
magical moment for me.
Above all else, focus on
giving your learners hope.
With hope, learners can
overcome any obstacle.
Without hope, even the simplest
barrier will get in their way.
The other thing that helped
me step out of the shadows,
was finding joy in everyday life.
And the way that I did that
was by taking up a hobby.
But not just any hobby, I took up
the hobby that you would least expect
from somebody with a
significant visual impairment.
I decided to learn
photography.
And yes, this is my first camera,
with a whopping 1.3 megapixels.
We’ve come a long way since.
So let me share with you
a few of my photos.
So why do I take photos, you’re
probably asking yourselves.
Why do I take photos that someday
I might not be able to see?
Well, if you’re just focusing on the photos,
you might be missing the big picture.
See what I did there?
So the reason I take photos
is the same reason that blind
photographer Pete Eckert does,
when he says, “The photos are for you.
The event of taking them is for me.”
You see, photography is
not just about art for me.
Photography, for me,
is a political act.
What photography does
is, it makes me visible.
And at a time in our country’s history, when
my rights as a person with a disability,
as an immigrant and as a person
of color, are under attack,
I need to be as
visible as possible.
(applause)
I need to tell the world that I’m visible,
I’m here, I’m proud of who I am, I belong.
Let’s give that same
message to our students.
Photography makes me visible,
when I’m out in physical space.
Whenever I show up somewhere
with my white cane and a camera,
(laughter)
People kind of do a double take.
And it really forces them to
reconsider their preconceived ideas
about what it means
to have a disability,
especially what it means
to have a visual impairment.
And of course when I share those
photos online,
it also makes me visible in those spaces
where a lot of our conversations
are taking place today.
So how do I do my photography?
Well, I rely on assistive technology that
is built into my smartphones, my tablets.
And here’s one
example of that.
This is technology that is built
into the voice over screen reader
that actually recognizes how
many people are in the frame
and tells me that information.
“One face, small face, face centered.
Take picture. Button.”
And of course I need to get to the
places that I want to photograph.
And so I rely on apps
like Lyft and Uber.
Where I live transportation, public
transportation, can be kind of spotty.
And cabs can be expensive
and unreliable.
With apps like Lyft and Uber,
I can get anywhere I want,
and they’ve really opened
up the world to me.
And if I want to learn about photography,
I can access books on my tablet,
in the format called ePub.
With ePub books, I can adjust the text
size, make it as big as I need it to be.
I can change the background so that
I have additional contrast.
And then when my eyes get
tired at the end of the day,
I can just have Alex read to me.
For a lot of people, technology
makes things easier.
For some of us, it
makes them possible.
Let me share with you
another example of that.
This is my friend Logan Prickett.
When Logan was a young man,
he went in for a routine MRI.
Unfortunately, they did not
know that he was allergic
to the dye that he
was injected with.
As a result, Logan went into shock.
And he ended up in a coma.
When he woke up from that coma,
he was blind, had a significant
motor impairment,
and also because they crushed
his vocal chords,
while providing life-saving measures,
today he cannot speak above a whisper.
So our challenge, I worked with a team
at Auburn University at Montgomery,
was to create a system that would allow
Logan to participate in his education,
along with his peers.
We built this system
around his smartphone.
And with this system, Logan
was able to attend class,
he’s able to participate in
classroom discussions,
he’s able to submit his assignments,
and he’s able to participate,
and do all the things that a
typical college student does.
So the end result of all this?
This past spring, Logan
graduated from college.
(applause)
Not only that, he graduated
cum laude in 4 years.
(applause)
Not only that, he’s a published
author as an undergraduate.
Because together, I believe in including
the people that I work with in research
and so we published a book chapter on
his experiences with technology
that we hope will help others
in a similar situation.
What’s also really cool about
my experience with Logan,
is that you couldn’t find two
people more different,
especially in the political
climate that we live in today.
Because we’re so much basically taking
sides and being part of different tribes.
Logan is born and
raised in the South.
I’m a Northeast liberal.
We may have different
political beliefs.
We may have different religious beliefs.
We may listen to different music.
But what’s important, is that we were
able to find the humanity in each other,
and we were able to work together,
towards a common goal.
When I work with learners like Logan,
my goal is not to do for them
what they can do for themselves.
My goal is simply to be the spark.
To light the path.
To give learners the tools and
the strategies that they need,
to be the best version
of themselves,
to achieve their dreams,
to reach their goals.
And so that’s my
challenge to you today.
Be the spark.
Light the path.
Above all else, I’m going to leave
you with a very important message.
We educators, we are the light that is so
desperately needed in the world today.
Will you join me in
making more light?
Will you join me in making sure
every learner can turn to the light?
Thank you.
(applause)