Angie C. Orlando - Deaf-Blind and Determined

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Sunday, November 5, 2017

Thursday, November 2, 2017

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Friday, October 13, 2017

two introductions

*** In honor of Disability Awareness month, Angie C. Orlando will
read from her manuscript, The Slide: A Poetic Memoir. the reading
will be on October 24th from 4:00 - 5:00 pm in the library Quiet
Study Room, also called the Garden Room. ***

It has been more than a yer since I graduated from the Ashland
University MFA program. During the first two Summer residency
sessions, I kept a journal of my feelings and experiences. I
regret that I was unable to continue this during the lat rescind.
The story, as recorded on my blog, is far from over. It's time to
go back and finish the tale.

In May of 2016, I turned in my final thesis, introduction and
list of 50 books read. My thesis defense was on July 25, 2016.
This began with a ten minute introduction. The two introductions
offered similar information but could not be the same. I wanted
to tell a creative story, the story of my writing, education and
the creation of my thesis. I now invite you to read these two

Thesis Introduction

Journey to The Slide

As a child, dressed in one of my ever present tomboy
outfits, I'd skip from the front door, around the corner, charge
down the large stone steps, across our gravel driveway and onto
Gardenview Drive. Ten feet later, next to an orange and black
"Caution: Children at Play" sign, and directly across from my
backyard, the street split in two. I'd take the bumpy, dirt road,
with its huge puddles and large embedded rocks, past the barren
soccer field, around the baseball backstop and step onto the
school playground.
In those days, playground equipment was built on large
squares of black asphalt. Children fell, got bruises, scrapes and
cuts, bled and lived to tell about it. I was tough and rough, too
cool for words. Each day I could be found climbing on top of the
monkey bars, twisting swings round and round to make them higher,
rubbing wax paper on the metal slide and trying to climb up the
slippery surface.
I lived in Kent, Ohio from 1974 to 1997 and 2006 to this
present moment. I attended Longcoy Elementary School, Davey
Junior High School, Theodore Roosevelt High School and Kent State
University. When I returned home after my divorce, I re-enrolled
at Kent State as a post-graduate student, taking American Sign
Language classes. My only goal was to improve my communication
skills. Little did I know that I had begun the journey that would
lead me back to the old slide of my childhood landscape.
It was my brother, Tony, who first said, "Write about it,
tell your story."
I did so, in a 6,000 word essay that got chopped to bits
before being published by the American Association for the
DeafBlind. Later, an E-Zine named Clerc Scar ran the essay in
The fuse was lit, I wanted more. Soon I created "Dotbug:
Deaf-Blind and Determined," a blog about my life as a woman,
mother and student who happened to be deaf and blind. I loved the
praise. I still wanted more, wanted to be better. Before I knew
it, I was enrolled in "Intro to Creative Writing" and I was
scared to death. I liked the part in the course description that
talked about fiction and creative nonfiction. I didn't like the
mention of poetry, or the five poetry books we'd be using for the
class. I didn't like figurative language, meter, form or rhymes.
I nearly dropped the class because of the strong focus on poetry.
What happened next was like magic. I opened the first book,
No Matter How Many Windows, by Jeanne Bryner and began to read.
In this book, Bryner uses poetry to document the lives of four
generations of women in her family. As Bryner explains in the
opening poem, "Rose of Sharon:"

Here's what's at stake in the common comer,

volumes of women's pale voices

bound and catalogued in the living room.

Do you have your card to this still library? (2)

I was captivated by each section, the hardships of the
far-past and not so long ago. Her mother's mental illness struck
me deeply, as I was still grieving for Tony, trying to understand
what made him pick up those pills to end his life.
Most importantly, what I found in those pages of my first
contemporary book of poetry were stories. The way of telling was
different from what I was used to. The emotions, images and
language made each poem pulse with life. But they were stories,
and I was hooked.
I took two more poetry classes at Kent State and began
looking into graduate school. Never in my life did I imagine I
would start an advanced degree in the field of poetry. I think of
myself as an accidental poet. I was following an unexpected path.
The road led me to Ashland University and the MFA program.
It would be a bumpy ride, like riding my bike over the rocks and
through puddles on my way to the playground. Each residency
brought communication challenges and severe pain in my arms. The
online classes were filled with technology problems. With a lot
of support, I made my way past most obstacles but crashed into
others. I got back up and continued the journey.
In my first semester class, we read Winter Stars by Larry
Levis. I loved the narrative quality of his work, and the way in
which he was so open with his life, even telling about affairs or
similar things people usually keep secret. Some of his poems,
most notably "South," were written in a "braided" style, jumping
around in space and time, yet so artfully woven together.
It was at this time that I had the chance to hear Mark Doty
do a reading at Kent State University. I wanted to get a feel for
his writing style and randomly picked a book to read. This turned
into two books of poetry and one memoir about his lover, Wally,
who was dying of AIDS. I was taken by the on-going story, the
arc, and Doty's gift of turning mundane objects into something of
I later read Still Life with Oysters and Lemon: On Objects
and Intimacy. Although the book is considered an essay, Doty
turns to his own life, as he describes the objects that are most
dear to his heart. A story about peppermint candy animates an
elderly woman with her drab sense of dress and black pocket book.
Inside the purse are a delight of objects, the same type of
treasures my grandmother kept in her own black pocket book.
In another story, Doty tells us of a platter he found at a
yard sale and bought for $5.00. His mother had loved white and
blue china and he inherited that fondness. The platter shows a
cobalt deer with antlers. Despite a chip in its surface, the dish
quickly becomes a favorite decoration. In fact, Doty argues that
the flaw in the platter, or any other object, makes it more
intimate to the owner.
I began to play around with my images. What could I add to
enhance the scene on a bus where I was first kissed? Or the field
while my junior high jazz band warmed up for an outdoor concert?
Or the yellow painted slide that represented the first "dent" in
an otherwise ideal childhood?
I was reading more poetry books outside of class. My
favorites were personal narratives that often had a focus on the
darker side of human nature. I enjoyed Alice Anderson, Julia
Kasdorf, Minnie Bruce Pratt and especially Sharon Olds. I
discovered The Father while writing my long paper for English
633. The topic was about how female, contemporary poets express
grief and loss through their work. Olds stood out with her
ultra-openness and, like Mark Doty, talent with details and
images. It's almost like she unzips herself, letting us view her
inside and out, in terms of the body and in sexual ways, even
when the topic isn't sex..
After I had found my niche as a narrative writer, I made
another discovery that would impact my work -- voice. I first
noticed the power of voice in poetry when I read North of Boston
by Robert Frost. The poems are told as dramatic dialogs. Frost
was concerned with what he called "the sound of sense." This
refers to the raw sounds of speech and how pure sounds can be
utilized in writing. Published in 1914, the book focuses on small
town life in rural New England. Frost sets out to depict the
harsh reality faced by people living in that time and place.
Unlike poetry I had previously read, the poems in North of
Boston include two or three characters as they speak to each
other. The only clues the reader has about what is happening is
through the true conversational sound of the dialog.
I sought out more poetry in voice and fell in love with the
Southern, black voice as depicted by Rita Dove and Patricia
Smith. They don't just write about people, they use common speech
in their portrayal and seem to become their characters.
As much as I liked to rad this poetry, I was skeptical about
my ability to write it. I have lived in Northeast Ohio for most
of my life. My parents were college educated. What is the voice
of a white middle class girl growing up in a small town in Ohio?
I began adding more dialog to my poetry and found my
childhood voice, first as a tomboy, then as a budding teen. The
voice loses confidence as the girl begins to feel the physical
and emotional loss of disabilities. There are more shifts as she
becomes an adult dealing with an abusive relationship, worsened
disabilities and the indifference of the medical community.
I had found the voice, my voice from different moments of my
life. Yet the manuscript needed something more. I discovered the
use of outside voice in Patricia Smith's book Blood Dazzler. To
begin with, the main voice is that of Hurricane Katrina. I've
read plenty of poetry about the devastation of this storm, but
never in the voice of Katrina. I was enthralled by the mere
concept of writing in the voice of something so huge and
destructive. In addition, Smith includes weather bulletins, TV
reports, emails and letters. I admired how the outside voices
offered supporting details that strengthened the main voice and
provided information that would be difficult to include as
Katrina. After all, I'm sure "she" wasn't concerned with FEMA or
the crisis at the Superdome.
Both of these voices are "heard" in the early poems, which
are titled with the time and date. For example, in "5 P.M.
TUESDAY, AUGUST 23, 2005," Smith begins with a weather update
from the National Hurricane Center:

"Data from an Air Force reserve unit reconnaissance
aircraft... along with observations from the Bahamas and
nearby ships... indicate the broad low pressure area over
the southeastern Bahamas has become organised enough to be
classified as tropical depression twelve." (3)

We then learn what Katrina has to say:

I become

a mouth, thrashing hair, an overdone eye. How dare

the water belittle my thirst, treat me as just




try to feed me

from the bottom of its hand? (3)

Finally, I had my tools ready, in the form of an old
braille machine and a structure involving narratives, images,
voice and outside voice. I was fiercely against writing about my
disabilities. I didn't want to be known as a "disability
writer." As I progressed through the MFA program, I began to
understand that I could not write about myself without the
disabilities. Instead of just including them, I embraced them
with open arms, which is why I chose to begin with "Disability
Jam." It's interesting to note that two poems, "The Slide" and
"Ashley" are about my interactions with someone who has a
This thesis is an introduction to my life, a memoir told in
a unique mixture of poetry and prose. More than 30 years after a
"mad man" had me trapped on a yellow slide, I return to the
playground. Join me now, climb up the ladder, sit down. We'll
make a chain and slide together. I promise it will be a wild

Thesis Defense Introduction

Good afternoon. Thank you for taking the time to hear my thesis
defense. You have read my introduction, thesis and lit of 50
books. Now I want to share some details about my experience in
the MFA program.
First, let me state a simple fact that has been the toughest
lesson for me to learn here at Ashland University: I am a writer.
What do I write? poetry, prose, flash nonfiction, or essays. It
doesn't matter what you call it.

In my manuscript, I include a poem called "Doubt" that
illustrates my battles with lack of self esteem and confidence in
my writing. There were so many reasons why I couldn't and
shouldn't enter this program. Each class was a step forward in
improving my image of myself as a writer.
English 631 taught me to break down over-done epic poems and cut
back to essential details. English 632 introduced me to
docu-poetics and what I call ultra chatty poetry. English 633
brought about a major break through when I began writing short,
personal stories with conversational voice.

In my thesis semester, I brought it all together and this
manuscript I call The Slide was born. Of course, it wasn't easy.
I felt like Dr. Frankenstein creating his monster. "Oh, no Igor,
you put the brain in up-side-down! Let's try it again this way."

The Slide is a collection of poetry and narratives about my life.
Interlocking themes include loss, grief, pain and survival. Yet
there is a light side to the darkness, unexpected humor and wit
that keeps the manuscript moving forward. My original idea was
to write about burdens, focusing on disabilities, domestic
violence and my brother's suicide. But not all burdens are so
obvious. Through writing, I rediscovered emotions and event from
my past that I barely remembered. As I worked on a piece, I
often didn't know what was going to be reveled. In "Summer
Vacation with Katie's Family," for example, I thought the
narrative was about the first time I had body odor. There turned
out to be so much more. I put the images and details together,
added kid-talk conversation and suddenly I realized this was a
coming of age poem, much like it's companion, "How I Became a

Despite my central theme of surviving life's hardships, I didn't
want to write about my own disabilities. I don't want to be type
cast as a disability writer. The early drafts of "First Blow" and
"Leaving" mentioned nothing of my hearing and vision loss. I was
revising "Leaving," and I got the feeling it made no sense. Why
didn't this woman jump in her car and drive away? Domestic
violence is complex, but to truly understand the situation, the
reader needed to know about my disabilities.

I went back into my past to the first hint of what I would have
to endure. That became a poem called "Tinnitus." When I heard
those helicopter sounds, I thought they were real. I wanted the
reader to believe it, as well.
I still couldn't find a way to write about the loss itself. That
was too painful. Yet, as I begin picking poems to further
develop, I discovered the story was already there.

You see it in "Boys." The girl in 7th grade had no disabilities,
the girl in 8th grade couldn't understand kids talk in the
cafeteria. The girl in 9th grade had to write notes and tripped
while walking along the river.

"Faith" is about my struggles to feel a connection to God or
religion. It begins before I had any disabilities and continues
up to the present day. I was writing about faith, and somehow,
that brought out the details concerning my disabilities.

One of my greatest challenges during English 701 was deciding on
how to order the poems. Chronological order seemed like the
obvious way to do it. I took the narratives and placed them in
perfect, chronological order in parts one and three. But what to
do with poems like "Disability Jam, Neuropathy, In the Dark and
The Kent Ohio Blues>" They didn't fit neatly in time. Some, like
"Faith" cover an extended period of time. I put those in section
two, which I thought of as a mixed bag of poetry.
Ironically, my faculty mentor and fellow students felt some of
the strongest poems were in that part. I began playing around
with order, staying roughly chronological while mixing in other
poems. This worked to break up the narratives, and add energy or
humor where darkness threatened to overcome. The new version
seemed like an entirely different thesis, although it mostly
consisted of the same poems. And now I don't think of it as a
monster but more like my baby.

We are here today to talk about The Slide. Let's do it. Thank

Angie C. Orlando

October 2017

Sunday, October 1, 2017

how IP hurts me

I graduated from Theodore Roosevelt High School in 1992. My main
thing, pretty much only thing, back then was band. I was one of
the rare ones who endured four years of marching and concert band
under a tyrant band director. I stuck with it because I loved
the music. I loved the saxophone and is sweet, silky notes.

Can we tell this story without my disabilities? No, I didn't
think so. Some of you are thinking, "How can a deaf, blind and
handicapped person be in the band?"

I'm obligated to explain, as if i'm asking for your permission. I
started playing saxophone in 5th grade, just like most student
do. I had no disabilities then. In high school I was hard of
hearing with low vision. I had no peripheral vision but decent
central vision. No one ever told me I should stop playing, and
the idea never occurred to me.

I would still be playing now, if only I could find braille music.
There's a company named Dancing Dot that offers software that
turns print and audio music to braille, but I can't afford it.
End of story.

My son is a junior at Roosevelt and plays saxophone in the band.
Actually, it's the same alto sax I played. I think he's more
talented than me, but he doesn't practice as much. I feel
something when he plays at home. It's this deep yearning need. I
want the music so bad it hurts.

This coming Friday is the Homecoming football game. They now have
alumni band members play with current students during the
pre-game show. I want to do it. My disabilities won't permit
that, but the urge will not diminish.

Let's pretend I'm not disabled. I'd rent a sax from Woodsy's,
memorize the music and join the band on Friday. I'd feel the
thrill of the music and power of being involved. In the stands,
people would laugh at the middle-age wanna-be reliving her past.
My son would roll his eyes at me. The show would end, and all of
it would be forgotten. No one would bother to think about that
plain, ordinary woman with the saxophone.

Sadly, that would never happen because I do have disabilities. My
attitude these days is tempered by the limitations but the drive
is not dead. I know I can't play with the band or march on the
field. The wanting inside me says there's got to be a way, there
must be something I can do. I don't care what, I just want to be

Joseph and I were talking about this yesterday. He said, "If you
really want to, I'm sure they can figure out something you can
do, and then everyone would think how amazing you are and cheer
for a super long time."

He killed the drive. He took a knife and slashed it into bleeding
pieces of broken dreams. Joseph wasn't being cruel. He was being
honest, and he was right. What he said was 100% true, exactly
what would happen if I stepped, or rolled, out on the field.
Joseph knew the bitter reality because we've been through it

This is how inspirational porn hurts me. I can't just be an old
fuddy who wants to have some Homecoming fun. I have to be the
disabled person, Joseph's inspiring mom who won't let anything
stop her. And that's what's going to stop me. I won't be anyone's
feel-good moment or a Facebook story, "You won't believe what I
saw at the game on Friday. I don't want to be remembered because
I'm deaf or blind or handicapped.

I'm a very determined person. I like to think that nothing can
stop me. I'll do it even if I have to do it in a different way.
Not on Friday. I'll be sitting in the stands in the special
accessible area, with you other disabled people. I'll sit
quietly, avoiding attention, thanks to inspirational porn. That's
how society hurt me. Can you try to understand?

Angie C. Orlando

October 2017

Permission is granted to share.

Friday, September 15, 2017

Thursday, September 14, 2017

Rise And Shine: Trainer +2 v.1.00 {MrAntiFun}

Options: F1 - Inf.Health F2 - Inf.Ammo Notice: First go into game then activate health cheat, First fire your gun then activate ammo cheat. You will still die from certain stuff like big explosives or certain enemy units, So avoid damage as much as possible. Short Documentaries

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The Wild Eight: Trainer +7 v.0.4.0b {}

Activating this trainer: Press F1 at main menu. Listen for 'Trainer Activated'. Press desired hotkey. All hotkeys can be changed on the trainer. Trainer Options: NumPad1: Freeze Health NumPad2: Freeze Stamina NumPad3: Freeze Warm NumPad4: Freeze Hunger NumPad5: No Building Costs NumPad6: Unlimited Items NumPad7: Unlimited Skill Points Notes: No Building Costs: While active you can build/upgrade everything for free. You also don't need to have the required materials. Unlimited Items: While active items will not removed on use. Unlimited Skill Points: First make sure you have NOTHING in your quick slots! Also make sure that you stand right in front of your shelter and inventory and so on is closed. Activate this option and access your shelter and spend skill points. Deactivate this option IMMEDIATELY when you are finished. DO NOT use this option ANYWHERE ELSE as it will affects other things as well then. Unlock more trainer options including updates from here - The Wild Eight Trainer Short Documentaries

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Killing Floor 2: Trainer +8 v1054 {}

Using this Trainer: Launch the trainer first, then launch the Game and then Press F1 at the Main Menu. Listen for "Activated". Press desired option key Options in Promo: Numpad 7: Flashlight Options Numpad 1: Heal Numpad 2: Super Health Numpad 3: Ammo Numpad 4: Reload Numpad 5: Grenade Numpad 6: Money Numpad 7: Flashlight Numpad 8: Armor Notes: Numpad 1: Heal - if your health is getting low, press this to heal back up. Numpad 2: Super Health - press this key to give massive high health. Numpad 3: Ammo - press this key and likely the current weapon will have massive ammo. Numpad 4: Reload - press this key and the current weapon will have a massive clip of ammo. Numpad 5: Grenade - press this key and the current grenade will have many more. Numpad 6: Money - press this key and you have mega money. Numpad 7: Flashlight - toggle this on and when you use the flashlight it will not run out of battery. Numpad 8: Armor - press this key to instantly fill the armor. Unlock more trainer options including updates from here - Killing Floor 2 Trainer Short Documentaries

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Endless Space: Trainer +2 v1.1.58+ {}

Using this Trainer: Launch the trainer first, then launch the Game and then Press F1 at the Main Menu. Listen for "Activated". Press desired option key Options in Promo: Numpad 1: Add Dust - adds one dust every 10 seconds Options: Numpad 1: Add Dust Numpad 2: Unlock Research Notes: PLEASE NOTE THAT YOU SHOULD TRY TO ENGAGE OPTIONS ONLY WHEN THE ITEM THAT THE OPTION AFFECTS IS VISIBLE OR ENGAGED. PLEASE FOLLOW INSTRUCTIONS EXACTLY. IF AN OPTION DOESN"T APPEAR TO WORK, YOU MAY HAVE ENGAGED IT TOO EARLY, NOT WAITED LONG ENOUGH TO SEE IT HAS CHANGED, OR YOU MAY SIMPLY HAVE TO RESTART THE GAME AND TRY THE OPTION AGAIN AS DESCRIBED IN THE INSTRUCTIONS. ALSO, NOTE THAT IT MIGHT BE BEST TO PAUSE THE GAME, THEN ACTIVATE THE OPTION(S), THE UNPAUSE THE GAME FOR SOME OPTIONS. WHEN YOU PRESS AN OPTION KEY FOR THE FIRST TIME, IF THE GAME HAS NOT FOUND THE CODE TO MODIFY, YOU WILL HEAR 'TRAINER CANNOT FIND GAME' AND THEN AFTER A SHORT TIME YOU WILL HEAR 'ACTIVATED'. PRESS THAT OPTION KEY AGAIN AND IF YOU ARE IN THE CORRECT SPOT IT WILL WORK FROM THAT POINT ON. IF NOT, THE TRAINER CANNOT FIND THE CODE YET AND YOU NEED TO READ THE INSTRUCTIONS. Numpad 1: Add Dust - While at the main Galactic Map where you can see the stars and the overall galaxy, press the Numpad 1 key. The first time you do this you will hear "Trainer cannot find game.". Give it a few seconds and you will hear 'Activated." This means the trainer is ready for you to use this option. Next, click on the EMPIRE MANAGEMENT icon on the upper left of the screen. This will open the EMPIRE MANAGEMENT screen and you can see your DUST, APPROVAL, and TAX RATE. Press this option key to add more dust. You will have to CLOSE the EMPIRE MANAGEMENT screen and return to the Galactic Map to see it has increased. Numpad 2: Unlock Research - While at the main Galactic Map where you can see the stars and the overall galaxy, press the Numpad 2 key. The first time you do this you will hear "Trainer cannot find game.". Give it a few seconds and you will hear 'Activated." This means the trainer is ready for you to use this option. Next, click on the RESEARCH icon on the upper left of the screen. This will open the RESEARCH screen and you can see the various DOTS for each researchable item. Mouse over a single research item and hover there until the INFO WINDOW for that item pops up. You will see the Cost for that item and the Turns it takes for that item to unlock. Press this option key while the INFO WINDOW is up. You will hear "Activated". Mouse away from the research item and then hover back over it until the INFO WINDOW pops back up. You will see that the Research item, if selected for research, will unlock at the next term. Also, you can SHIFT select many research items at once. As long as you have done this option on each of them, they will all unlock at the next turn. You can unlock as many as you like. Unlock more trainer options including updates from here - Endless Space Trainer Short Documentaries

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Mass Effect: Andromeda: Trainer (+18) [Update 1] {LinGon}

Options: Home - Active Trainer F1 - Inf. Health F2 - Inf. Shield F3 - Inf. Ammo F4 - No Reload F5 - No Weapon CD F6 - Inf. Consumables F7 - Inf. Credits/Resourses F8 - Add Exp. F9 - Add Levels F10 - Add SP F11 - Mega Research Points Num 0 - Inf. Life Support Num 1 - Big Inventory Num 6 - Gravity Mode Num 7 - Super Speed Teleporter Num 8 - Save Location Num 9 - Teleport Num 0 - Undo Teleportation Short Documentaries

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Battlefield 1: Trainer (+10) [12630] {MrAntiFun}

Trainer options F1 - Infinite Health F2 - Infinite Ammo / Infinite Gadget F3 - No Overheat F4 - Super Fire Rate F5 - Super Accuracy F6 - No Recoil F7 - Instant Tank Gun Reload F8 - Infinite Aircraft and Tanks Missiles F9 - Infinite Tank Health Notice: For tank health cheat to work for tanks or airplanes first you must activate cheat, Then lose tank or aircraft health, Then repair it once, After that you will have unlimited health for airplane or tank, You must do this once every mission. Short Documentaries

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Visual Importer ETL Standard 32 Bit v. Free Download

Visual Importer loads data into ANY Database from ANY Database or file. Full support for Excel, Access, DBF and Text files, Oracle, MS SQL Server, Interbase/Firebird, MySQL, PostgreSQL or any ODBC compliant database. Thousands of records per second. Short Documentaries



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Friday, August 11, 2017

deaf, blind and determined

Deaf, Blind and Determined: The Meaning of Disability

Watch the video:

August 4th, 2017

Presented to students and staff at the West Virginia School of
Osteopathic Medicine

North Lewisburg, WV


Tell us about yourself and your family.

I was born with no disabilities. There was no family history of
disabilities, and no hint of what was to come.

I was the youngest of three children and the only girl. Tony is
five years older, and Scott is four years older than me.
Naturally, I was spoiled rotten.

I had a good, normal childhood. We lived in Kent, Ohio, in a nice
neighborhood, right beside an elementary school.

"Normal" began to crumble away when I was in first grade and Tony
was in sixth grade. Some classmates were messing around, and he
got hit in the eye with a pencil. While treating him for the
injury, doctors discovered he had Retinitis Pigmentosa (RP). He
was gradually losing his peripheral vision and could not se in
the dark.

When I was 13, I began losing my hearing. Since Tony had RP and I
was hard-of-hearing, doctors said I must have Usher Syndrome. It
was assumed that I would lose my vision, too.

They were partly right. At 16, I was diagnosed with RP. But
genetic testing would later rule out Usher Syndrome in my family.

At that point, my central vision was still good, and I could
understand speech by combining what I heard with my cochlear
implant and the visual cues of lip reading. I went on to college
at Kent State University and graduated with honors. Then I moved
to Maryland, where I started teaching, got married, bought a
house and had a baby.

My son, Joseph, is the most precious thing in my life. When he
was six months old, I suddenly became very sick. We had no idea
what was going on. I rapidly because totally deaf and blind. I
lost feeling and use of my hands, feet and legs. I couldn't walk.
People had to feed me, dress me, and lift me onto a potty chair.
They communicated by using their finger to "write" letters on my
face. And still, the doctors could not say what was wrong with

As time passed, I got a little better. I regained feeling and use
of my hands and began learning tactile sign language and braille.
My legs regained some strength, but I still have trouble walk and
have no feeling in my feet. My vision did not
improve. I am totally blind. I see nothing, not even shadows or
light. Without the cues of lip reading, I can no longer
understand speech.

I got divorced about 11 years ago. I now live in Kent in a small
apartment with my son. My parents live one mile away. I have full
custody of Joseph, who is now 16 (yikes!)

When I returned to Ohio, I began going to the Cleveland Clinic.
Dr. Marvin Natowicz has been working hard on my case. For years,
he tested me for what felt like a million different conditions.
The results were always negative and normal. I thought we'd never
get any real answers.

Then, in the summer of 2011, a test came back positive. My DNA
shows a genetic mutation that has only recently been discovered.
The disorder is known as PHARC. (Polyneuropathy, Hearing loss,
Ataxia, Retinitis Pigmentosa and Cataract).

The ironic part is that I finally got this diagnosis... And it's
called "fark." What a stupid name! I was complaining to Joseph
about this and he said, "Mom, it's a stupid disease so it
deserves a stupid name."


When you first encountered your disability, how did you think it
would impact on your life? What did you know/believe about
disability before you experienced any type of disability? What
was the basis for your knowledge/beliefs?

I was exposed to people with disabilities early on. All the
children with any type of disability in the region, were bussed
in to my elementary school. We had special classes for students
who were deaf, learning disabled, had attention or behavior
problems and for those with severe developmental disabilities.
They weren't in my classes, but they were there at the school. I
saw them. I volunteered to help in some of those special classes.

Of course, there was also my brother, Tony, who was partially
blind. He didn't look blind to me. He didn't use a cane, and he
could read print and play soccer. I don't think I really
understood about his vision loss until I began to experience the
same thing.

I was a teenager when I began having trouble with my hearing and
vision. I tried to be strong, but doctors and my family gave me
mixed signals. For example, I was diagnosed with a mild hearing
loss, and they said it wouldn't get worse. It did. They gave me
hearing aids that only made the distortion worse. When I
complained about the hearing aids, I was accused of "being a
teenager." They told my parents I was vain and didn't want to
look different from my peers. My parents were instructed to force
me to wear the hearing aids. Those were bad times. I mostly hid
in my room to get away from the world.

I remember going to a special hearing center. I was hooked up to
a machine that showed something, I don't know what. They told me
not to move because that would mess it up.

I sat there, very, very still, but I could see the doctor as he
turned to my mother and told her I had Usher Syndrome. She broke
down and sobbed. I saw the horrible look on her face and knew my
life was over.

For years, my biggest fear was of becoming totally deaf and
blind. I'd think of Helen Keller in "The Miracle Working." She
overcame so much, but I didn't think I could survive if I had to
live like her.

A big impact about being totally deafblind came from a woman I
met on a hearing loss bulletin board. She'd type just a sentence
or two with so many typos, I could barely figure out what she was
saying. One day she told the story about going to a doctor
appointment. She was there, but everyone talked around her. She
had no clue what was going on and didn't seem bothered by it.
After the appointment, the doctor used his finger to print "hi"
on her palm. She was so excited that a doctor actually talked to

I thought, "no way!" I could never exist like that. I swore to
myself that I would get something out of life. I could not be
like that poor woman I met online.

Truthfully, I wanted to die. At first, I was too weak to do
anything myself. I begged my husband to help, but he wouldn't do
it. Then one day I was alone upstairs. Nobody knew I was awake. I
found some pills. But instead of taking them, I crawled into
Joseph's room. I lay on the floor holding his Pooh blanket and
beloved big Tigger. I could smell his baby scent. At that moment
I realized no matter how awful things were, I couldn't take my
own life. I couldn't do that to him. I loved him more than
anything. I couldn't leave him.

People often ask me where I find the strength to go on. The
answer is Joseph. He's my rock and guiding light. Even multiple
disabilities can't crush the bond I share with my son.


In what ways has your disability impacted your immediate family

Because my condition is genetic, most of my family is affected.
Of course, my parents were carriers. There was no way they could
have know. It was one of those nasty time bombs everyone carries
in their DNA. My parents feel guilty. They want to take care of
and protect me. I want to be as independent as possible. I don't
want to be a burden or treated like a child. That sometimes
causes conflicts. It was especially difficult for them when I
moved into my own apartment.

Then there are my brothers. I believe Tony had PHARC, too. At 38,
he could still read print. He used a white scanning cane. He
struggled with depression. Even though his hearing was normal and
he could walk just fine, he had a much harder time coping with
his limitations. He finally gave up. Tony committed suicide 10
years ago. His funeral was on what should have been his 39th

My other brother, Scott, does not have any disabilities. That
doesn't mean he enjoys a free and easy life. I think he' has
survivor's guilt, if that makes any sense. He got lucky. His
brother and sister did not.

For me, the major medical implication had to do with Joseph. I
was worried about whether or not he inherited my disabilities. I
didn't want him to suffer the way I did. I would still love him
if he started having problems, but I want him to have a normal

These fears haunted me for years. I now know what causes my
disease is. That gave us an idea of whether Joseph was at risk.
The chance of him having PHARC is so low Dr. Natowicz says Joseph
doesn't need to be tested. I was finally able to tell him he
won't have my problems. Who knows what life has in store for him?
But PHARC is not part of it, and I thank God for that every day.


Has having a disability changed who you are? Has it changed who
other people think you are?

In some ways, I think having a disability has changed who I am.
What I've gone through has made me stronger and more adaptable.
I'm not the person I wanted to be. I'm not doing what I planned
to do. So much has changed in my life, but I'm still me. I just
do things in a different way.

I do believe other people think I'm different now. Some people
are overcome by pity. They can only see the disabilities. I know
I look pathetic but I don't want anyone's pity.

Having a communication disorder makes it even worse. Some people
assume I have cognitive problems. Give me an interpreter, and
I'll show you there's an awesome brain inside this body.

One thing I hate is when people who don't know me say I'm amazing
or inspirational. Those are like bad words to me. I'm just a
person doing the best I can... Same as everyone else. There's
nothing amazing about that.

I used to think I was the only one who disliked those words. But
I now know this is a concept called "inspiration porn." (Get your
mind out of the gutter, it has nothing to do with sex.) The word
"porn" is used because seeing people with disabilities evokes
good feelings in non-disabled people, what my Kindergarten
teacher called warm fuzzies.

It's okay if you know me and I have truly accomplished something
important. For example, after my thesis defense last Summer at
Ashland University, I posted on Facebook, "I did it, Mom." She
replied, "So proud of you, Gina Bean."

Her praise did not annoy me. She knew what it took for me to get
to that point in life. She was inspired, and that made me feel

My graduation didn't go as well. I was using a wheelchair, so I'd
have my hands free for communication. As planned, I followed my
MFA classmates but used a ramp to get on stage. The dean finished
calling names and was moving on to the next degree, skipping me.

My interpreter thrust the wheelchair out onto the stage. The dean
gave me an empty diploma case, shook my hand and smile for the
photographer. Several other people did the same. The audience was
clapping loud and long. They continued to clap after I left the
stage. My name was never announced.

All these people who didn't know I existed until they saw me on
stage are feeling inspired, what an amazing woman, they think.
All they know is that I'm deafblind and in a wheelchair. They
don't even know my name, and they cheer and wipe tears out of
their eyes.

It made me feel like an object. It wasn't about me earning a
master's degree. It was about me being a tool to make other
people feel special.

Here's another way to look at it. I'm out grocery shopping with a
friend's help. A random stranger comes over and says, "I feel
inspired watching you." Why? I'm just getting food. Everybody
does that every day. You've all done it. Is grocery shopping

Consider that middle aged woman, average height, average weight,
brown hair and brown eyes, who keeps cutting you off with her
cart. Is she amazing? I'd cut you off with my cart if I could.


Based on your encounters with the medical system, what would you
want medical students to learn in their medical school curricula
in addition to traditional medical teachings?

I want medical students to learn how to "see" people with
disabilities. For example, I walk into an exam room. The doctor
looks at me and sees a deaf and blind woman who can't walk well.
He sees my leg braces and crutch and cochlear implants. Then he
reads a few notes in my chart and thinks he knows me.

Nope! That's not who I am. The doctor needs to look past the
disabilities and find the real person within. I'm a mother and a
writer... a lover of cats. I drink Dr. Pepper and read vampire
novels. This is the real person. This is who I am. You need to
look past the disabilities. Take the time to talk to your
patients. Find out who they really are and what they like and how
they feel.

Also, don't assume you know everything about me because you read
my file. That might tell you about my medical history, but it
doesn't tell you who I am.

Finally, understand that you aren't an expert about my
disabilities. You might know about vision loss or neuropathy or
muscular problems. That doesn't make you an expert about me. I'm
the expert, because I'm the one living with these disabilities.
If we work together, you may be able to help me. But if you act
like you know it all, nothing will be accomplished.


What has been the economic impact of your disorder? How did you
find resources and support services? Do you feel that these
resources and/or support services are adequate or inadequate?

When I got the diagnosis of PHARC, I was eager to research the
condition online. There were only two articles, one referring to
the other, and they were written in such strong medical language
that I couldn't decipher much. I was left feeling empty. Here I h
a diagnosis, I wanted to learn more, but there was nothing
available. Six years later, there's been no change.

The only support network I know about is a PHARC group on
Facebook, and i'm the one who created it. We have seven members
and no one bothers to post anything. We are all waiting for the
same thing -- research and new information.

I want to reach out to other people with PHARC. I don't know how
to find them. The disorder is so rare. There may be less than 100
people world wide who have the condition. Or perhaps it's less
than 50 people. Nobody knows and nobody knows how to find out.

The more general condition of deafblindness is still rare. There
are few options for support, and those programs that do exist are
shutting down. In Ohio, there is no state program for service
providers to assist people who are Deafblind. I'm on SSDI and get
child support, so my income is too high for me to qualify for
help from my country board of developmental disabilities and
services for independent living. That sounds crazy. My main
income is SSDI and I have Medicare and that makes me ineligible
for services. I could purchase a Medicaid waiver, but,
ironically, I can't afford it. I worry about my future when I
lose part of my SSDI and child support, even though my son will
likely still be living with me. That day is coming soon. I don't
know what I'm going to do.

Angie C. Orlando

August 2017

Permission is granted to share

Wednesday, June 28, 2017

Harry Potter and me

I was a newlywed in 2000 when I discovered Harry Potter. At
first, I wasn't interested, because I didn't know what it was
about. The stacks of books at Border's had weird covers that
appeared to be in shades of brown. Nothing grabbed my attention.

"You should read it," my husband said. "You are more child than

I playfully punched Greg's arm as we laughed and walked away.
One day I found Harry Potter and the Sorcerer's Stone in the tiny
large print section that was, oddly, part of the reference book
area. I had only been reading large print for a short while. I
experienced less eye strain and pain with these books, but there
was hardly any available besides dictionaries and cross-word
puzzles. The cover still looked brown. The book jacket, now that
I was finally reading it, sounded promising.

"Are you 12?," Greg asked, when I placed the book on the
check-out table.

Later, I opened the book and read, "Chapter one: The Boy Who
lived." My life would never be the same. The MAGIC sparkled
through my brain, a world of bright colors, creativity and
beloved characters. Poor eyes be damned! I read The Chamber of
Secrets, The Prisoner of Azkaban and the Goblet of Fire in
regular print.
When I called Greg a muggle, he had to be sure I wasn't making
fun of him. He read the books in five days.

Harry Potter and the Goblet of Fie was the last book I read with
my eyes. Harry Potter and the Sorcerer's Stone was the last movie
I would ever see.

"Is it worth all the fuss?," Mom asked when I got back from the

"Read," I commanded.

She did. Another heart was brought over to the Harry side.

The Sorcerer's Stone was the first book I read in braille. It was
like going through a port key to return home after a long
absence. I read the next three books in braille and waited with
the rest of the world for book five.

Mom went to the Harry Potter parade in Hudson, Ohio when The
order of the Phoenix was released. She was on the local news,
dressed like Professor McGonagall. Dad was a muggle. He wasn't
on the news.

Harry Potter and the Half-Blood Prince was released from National
Braille Press at midnight the same day the print book came out.
Joseph and I went to the Hudson celebration with my parents. I
was Hermione, complete with a SPEW badge. Joseph, who was four,
sat on my lap as Dad pushed the wheelchair. He was adorable in a
hand-sewn wizard costume, black hat and round glasses. He tossed
about a Golden Snitch while his bright blue eyes too it all in.
He won a best costume award.

I read The Deathly Hallows on a Braille Note Apex and The Cursed
Child and Fantastic beats on my Braille Sense U2. The electronic
braille felt crisp, as my fingers soaked up the words. We tried
to go to Hudson again but couldn't get near the city. Last year I
attended the first Kent potterFest in downtown Kent, Ohio. They
expected about 3,000 people, but around 30,000 showed up. The
streets were packed, and the energy of thousands of people
celebrating what they love flowed through everyone.

I'll be at the next Kent PotterFest on July 29, 2017. You'll know
me as the middle aged woman in a blue plaid wheelchair, who
communicates using tactile sign language. I'll be wearing a jean
jacket with seven Harry Potter patches on it. Even if it's 90
degrees, I'm wearing that jacket.

my technology has limitations. I can't access the quiz sites that
tell you what house you are in. I don't need to. Like James
Potter and all the Weasley kids, I knew I was Gryffindor before
the sorting hat touched my head. I've lived a harsh life darkened
by disabilities, abuse and death. I've stood in front of a court
judge to plead for custody of my little boy. The judge was no
Umbridge. Maybe he could see the Dark Mark over Greg's head. Or
maybe he sensed my heart brimming with the spell of motherhood,
because I was victorious. Like Harry, I bravely faced my nemesis
and triumphed.

Sometimes I'm overwhelmed by depression. There are Dementors
lurking in the shadows. You have to have courage to hobble in my
shoes. But I always stumble into someone: Harry Hermione and Ron
or Percy, Annabeth and Grover or Carter and Sadie or Meg, Miranda
and Makenzie. A friend, the silver glow of their Patronus pushes
away gloom and fills my life with light.

Angie C. Orlando
June 2017

Permission is granted to share.

Monday, June 5, 2017

neodba strawberry festival

Remember to rsvP
We need volunteers

Please join Northeast Ohio DeafBlind Association at the Kirtland
Strawberry Festival.

Saturday, June 17, 2017
1:00 to 5:00 PM

The festival is located at Kirtland High School
9150 Chillicothe Road, Kirtland Ohio 44094.

Meet in the main tent

Enjoy the summer with cool, juicy strawberries that burst with
flavor! Fresh strawberry shortcakes, sundaes, and chocolate
covered strawberries, food, rides, midway flea market, crafts and
commercial area.

Free admission to the festival. Bring cash for rides, food and
flea market.

Everyone is invited: Individuals with hearing and vision loss,
volunteers, SSP's, family and friends. The use of and knowledge
of sign language is not required.

To RSVP, ask questions or sign up as a volunteer: contact Angie
text: 330-221-6499.

Please respond by June 12th so that we can properly plan.

Share this email to help spread the news.

Sunday, May 28, 2017

neodba and dno summer events

Please join Northeast Ohio DeafBlind Association at the Kirtland
Strawberry Festival.

Saturday, June 17, 2017
1:00 to 5:00 PM

The festival is located at Kirtland High School
9150 Chillicothe Road, Kirtland Ohio 44094.

Meeting place TBA.

Enjoy the summer with cool, juicy strawberries that burst with
flavor! Fresh strawberry shortcakes, sundaes, and chocolate
covered strawberries, food, rides, midway flea market, crafts and
commercial area.

Free admission to the festival. Bring cash for rides, food and
flea market.

Everyone is invited: Individuals with hearing and vision loss,
volunteers, SSP's, family and friends. The use of and knowledge
of sign language is not required.

To RSVP, ask questions or sign up as a volunteer: contact Angie
text: 330-221-6499.

Please respond by June 12th so that we can properly plan.

Share this email to help spread the news.

Mark your schedule for Summer Dno!

Last Friday of June, July and August
June 30
July 28
August 25 We will meet at 5:00 in the food court at Summit
mall (Fairlawn, Ohio).

Please share with your friends.