Angie C. Orlando - Deaf-Blind and Determined

contact me at

Saturday, November 17, 2018

story of determination

My family moved to Kent when I was a tiny baby. I attended
Longcoy Elementary school, Davey Jr. High School and Roosevelt
high school.

Then I went to Kent State University. After graduation, I moved
to Maryland, where I lived for ten years.

I returned to Kent when my son, Joseph, was five years old. He
attended Longcoy Elementary school, Stanton Middle School and now
he's a senior at Roosevelt. Next year he'll start classes at Kent

Life in a small town runs in circles, one generation after the
next. Some day I'll die in Kent, and that's good enough for me. I
love this city.

Most people assume I was born DeafBlind. I wasn't. I was just
like any other baby, only extra cute with ringlets of black
curls. My parents had no clue that things would change.

It started when my oldest brother Tony was in sixth grade, and I
was in first grade. He got hi in the eye with a pencil. While
treating the injury, doctors discovered he had Retinitis
Pigmentosa (RP). This meant he was losing his peripheral vision
and had trouble seeing in the dark.

I was diagnosed with a mild hearing loss when I was 13. The
doctors said it wouldn't get worse. It did. They said hearing
aids would help. They didn't.

I was told I was "being a teenager." They said I was lazy, vain
and didn't want to look different from other kids. They were

I was diagnosed with RP at 16. Like Tony, I had severe tunnel
vision and night blindness. Unlike me, his hearing was normal.
That was always hard to understand.

Both my hearing and vision loss were invisible disabilities. Most
people knew I had a hearing problem. Few knew about my vision
loss. I tried so hard to appear normal, but it was impossible. I
couldn't hear, I couldn't see much. I misunderstood people. I
stumbled over things every day.

High school was the worst. I wasn't in special education. I
didn't have an IEP. Teachers were told not to call on me. Some
never spoke to me at all.

I sat in class, unable to hear my teachers. I failed tests I
didn't know about, got zeroes on assignments I didn't know about.
I was being punished for being deaf and believed I deserved it.

Sign language would have helped, but I wasn't allowed to learn
it. The professionals insisted I would stop listening if I knew
sign language. What they didn't seem to understand was that I
couldn't hear. No, those days were not good.

In Maryland, I had a husband, house, teaching career and, later,
a baby. Not many people knew the stress I was facing with a new
baby, abusive husband, controlling mother-in-law and
discrimination at work.

There are a few theories on why my disabilities worsened. I
believe stress caused a genetic flare-up. Joseph was only six
months old. I rapidly lost all vision and hearing, as well as
feeling in my feet, legs and hands. I couldn't walk or feed
myself. People had to lift me onto a potty chair. They used their
finger like a pencil to print letters on my face. Plus, I was in
so much pain, like pins and needles but much worse. All that
loss, and I was in constant pain

I healed some. I can hear sounds with two cochlear implants. I
can walk with a fore-arm crutch and sighted guide, but my feet
are still paralyzed. Thank goodness my hands healed. I finally
learned sign language, and braille. I love being able to read

throughout all of this, all of those years, no one could say what
was wrong with me. We got one diagnosis after another, all of
them wrong.

Poor Tony couldn't cope He committed suicide 11 years ago, and we
still didn't know what caused our disabilities.

We finally got answers in 2011. My blood tested positive for a
super-rare genetic disorder called PHARC. That stands for
polyneuropathy, hearing loss, ataxia, RP and cataracts. About 50
people world-wide have been diagnosed with this disorder.

Life goes on, and I do the best I can. The wonders of technology
have given me a voice I make it a powerful voice through my
writing and speaking engagements. This is a story that needs to
be told. My book, Through the Tunnel: Becoming DeafBlind, is the
story of my life told in prose poetry and short narratives. You
get to sample a bit from each stage of my life: weird tomboy,
junior high princess, sad, lonely teenager and as an adult,
caught in a web of disabilities and abuse. It is a dark story,
yet there is humor and hope. Most of all, it's the story of

Happy Release day! The book is officially on the market. Order
now from Handtype Press.

Through the Tunnel: Becoming DeafBlind

by Angie C. Orlando.

Permission is granted to share

Angie C. Orlando

November 2018

Thursday, October 4, 2018

feeling through film

$67,000 must be raised in six days!

Support Feeling Through Film. Donations are needed to make this
important project a success. Big, small and all are greatly

The Helen Keller National Center sent out a bast email with the
subject line: DeafBlindness Didn't Stop with Helen Keller. They
are right about that. Now we have a chance to be recognized.
Please share this blog so we can reach everybody.

HKNC says:

Eight months ago filmmaker Doug Roland approached us about a
short film, Feeling Through, which will feature for the first
time ever, a deaf-blind actor in a lead role. Working in
association with the Center, the project has now grown to include
a documentary following that actor's journey, and a national
screening series that will pair both films with a talkback
featuring members of the deaf-blind community.

The movie cannot be made unless $67,000 is raised within the next
SIX DAYS. We are only 1/3 of the way there.

HERE'S HOW YOU CAN HELP. Don't let this unique opportunity to
promote awareness of people who are deaf-blind slip by!

Go to to make a pledge of support for the
film. Whether it's $1.00 or $1,000, your contribution will help
get this unique and powerful movie made.

Follow Feeling Through Film on Facebook:

What is Feeling Through Film?

Feeling Through Film is a major project to cast a DeafBlind actor
in a leading role for the first time ever. It is vital for this
story be told by a diverse community of artists, cast and crew.
They are committed to fostering an inclusive environment in which
every voice is welcomed and respected.

You can contact them at for more

From their website:

Feeling Through follows the story of Tereek, a kind but guarded
teen wandering the streets of New York, desperate for a place to
crash for the night, and his encounter with Artie, a DeafBlind
man in need of help getting home. What begins as an awkward
meeting between strangers becomes an intimate bond between
friends and a nightlong journey that forever changes Tereek. It
takes someone who can neither see nor hear Tereek to really know
him, and in turn, inspire him to realize his own sense of

"Feeling Through" is written and directed by @dougroland. His
previous film "Jada", is the story of a 7-year-old who lives
alone on Venice Beach. The film went on to become a festival
favorite and acquired more than 15 million views on YouTube. With
your help we can achieve the same success with "Feeling
Through".The journey of Feeling Through began

seven years ago when I had a chance encounter with a man named
Artemio on a New York City street corner. We shared an instant
connection that night as Artemio was one of the most trusting and
open-hearted people I had ever met. He also happened to be
DeafBlind, and this experience not only inspired the story of
Feeling Through, but motivated me to learn more about a community
I realized I knew nothing about.

Fast forward to eight months ago when a phone call with the Helen
Keller National Center propelled Feeling Through into the realm
of possibility and grew the project into something far greater
than I had imagined. As our relationship has evolved, I've gotten
the opportunity to learn more about the work they're doing and
how Feeling Through can potentially benefit that work. I've also
had the privilege of connecting with organizations like the
Braille Institute and Commission on Compassion and the
communities they serve in Los Angeles, and have even started
taking beginning ASL classes myself. What felt like a brief but
special connection seven years ago has blossomed into a
life-changing journey.

Saturday, September 29, 2018

deafblind community and culture i

DeafBlind Community and culture: Living the Life

Presented to the Deaf Power Organization Kent State University

September 28, 2018

Let's start with what it means to be DeafBlind. Imagine two big
circles. One is labeled Deaf, and the other is Blind. We push
them together so they partly overlap, like a venn diagram in
math. The overlapping part is DeafBlind.

If you want to be really cool, you could do it in colors. Deaf is
blue, blind is yellow. That makes DeafBlind green. I've elected
green to be the official color of DeafBlind.

This is an awesome venn diagram, and it might be true for some
DeafBlind people, but most don't belong in that overlapping area.
I think of it more like this -- There are two big circles labeled
Deaf and Blind. Far away... way out here... there's this tiny
circle, like an island, that is labeled DeafBlind. The word
DeafBlind is bigger than the whole island. To understand what I'm
talking about, you need to know what is meant by the term

DeafBlind is an odd, often misleading term. We are Deaf, and we
are blind, so we are DeafBlind. make perfect sense. Only it
doesn't make sense at all.

DeafBlind is an umbrella term that refers to any one with any
degree of combined hearing and vision loss. Most people who are
DeafBlind are Deaf with low vision. They may have Usher Syndrome,
which is the leading cause of Deafblindness in the United States.
People with Usher Syndrome are born Deaf or hard of hearing and
begin losing their peripheral vision in the teen years. We call
this "tunnel vision." Another symptom is not being able to see in
the dark.

The fancy name for this set of vision problems is Retinitis
Pigmentosa (RP). It would be easier to say that people with Usher
Syndrome are Deaf and have Retinitis Pigmentosa. But that's not
easy to say, and most people don't know what RP is.

The trick with RP is that a person's central vision might be
20/20, but they are still legally blind. Their vision will
probably get worse over time. Most retain some usable vision.
Others gradually become full DeafBlind.

Then you have DeafBlind people who are blind and hard of hearing.
They often use assistive listening devices and never learn to

Last we have the very small sub-category of people who are full
Deaf and full blind. I'm one of them... lucky me.

Why do they use the term "DeafBlind" when most DeafBlind people
have some usable vision or hearing? This creates an identity
issue. Some people reject the label "DeafBlind." Some don't
realize they are considered DeafBlind. They may identify as Usher
Syndrome or Deaf with low vision.

Here's something funny for you. I graduated from Kent State in
1997. I was hard of hearing with RP back then, but I do not have
Usher Syndrome. I identified as hard of hearing. I never
mentioned my vision problems. I didn't know I was DeafBlind.

Five years later I lost all my vision and hearing. In 2008, I
returned to Kent State as a post graduate student. I was the
first DeafBlind student to attend Kent State... except I already
was the first DeafBlind student at Kent State. DeafBlind can be
confusing that way.

Let's go back to that venn diagram. You may be wondering why I
made DeafBlind a far away island. If only it was a tropical
paradise. Not so much in real life. Here it is, the obvious
secret to the life of people who are DeafBlind -- We are unable
to use one sense to compensate for the loss of the other. Thus we
have needs different from those of people who are just Deaf or
just blind.

Since my venn diagram is imaginary, you can't see the label. The
word is DeafBlind. Deaf, capital D, no space, no hyphen, Blind,
capital B. It's one word, because it's one condition, a unique
condition, with it's own set of needs, problems, issues,
community and culture.

You'll see people refer to us as "deaf and blind," or "blind and
deaf" or "deaf-blind" with a hyphen. That refers to two
conditions being combined. But DeafBlind is one thing, and it's
different from just Deaf and just blind.

There are two terms I use, maybe not correctly, but it's what
makes sense to me. These terms are "community" and "culture."

When I talk about the Deaf community, I mean anyone who is
involved with people who are Deaf. Community is the big picture
and refers to people who are Deaf culture, oral deaf, hard of
hearing, DeafBlind, interpreters, family members, etc. You don't
need to be fluent in ASL to be part of that community.

Deaf culture, however, is centered around ASL. Like with any
culture, it's about a shared language, customs and values. Many
people who are Deaf culture are born Deaf, and ASL is their first
language. Some are children of Deaf adults who might be hearing,
but they still grew up signing.

I have heard it's possible for other people to find their way
into the inner core of Deaf culture, like someone who is oral
Deaf and later decides to learn ASL and take up signing full
time. I know it happens, but it doesn't look like it will be
possible for me.

I'm hearing culture. All of my family is hearing. My mother and
son can fingerspell. That's it. I use tactile signed English and
fingerspelling for receptive communication and voice for
expressive, unless I'm signing with somebody who is Deaf, and
then I struggle like crazy.

I'm part of the Deaf community but not Deaf culture. It took me a
long time to come to terms with this. The feeling I get from
people who are born Deaf or others who are very fluent in ASL is
that I'm inferior. If I was a proper Deaf person, I'd be signing
exclusively and faster and better. Plus, I'm a traitor for having
cochlear implants.

Not all Deaf Culture people act this way. Most don't. But the
ones who do are very vocal and in your face about it, especially
on Facebook. It can wear you down.

I can't change the past. I was born hearing. When I started
losing my hearing at 13, I wasn't allowed to learn sign language.
When I rapidly became full Deaf and blind at 28, I only knew the
manual alphabet.

I couldn't find anyone to teach me sign language, so I entered
the ASL program at Kent State and took ASL 1 through 5. I've
worked hard to get where I am despite numerous challenges. I
never made it to perfection with ASL. It's just the way it is.
Nobody has the right to shame me for not being Deaf culture.

What about people who are blind? The term "blind community" is
frequently used to refer to anyone who is blind or visually
impaired. But most agree that there is no such thing as blind

Culture is centered around language. There is no special language
for people who are blind. Braille is not a language. It's a
tactile code for reading English. It follows all the rules of
English grammar. Or it's used with any language, not just
English. It's a tool to access a written language.

Sometimes I'm asked about navigating Deaf and blind culture, as
if it's a cross-culture thing. It's not. I can discuss the Deaf
community versus the blind community. But I'd rather focus on

The DeafBlind community is diverse. Needs differ greatly from one
person to the next. There are no guidelines, no rules, that
properly define someone who is DeafBlind. I like to say that the
only rule is that there are no rules.

I already described DeafBlind people in terms of degree of
hearing and vision loss. Another approach to categorizing
DeafBlind people is through communication methods.

There are signers and non-signers. Among signers, you have those
who use regular platform interpreters, those who need close range
and people who do tactile sign language. There's variety in type
of sign system -- ASL, PTASL, signed English or fingerspelling
only (The latter is sometimes called the Rochester method._)

There are people who use speech and hearing, those who utilized
technology for communication and others who use print-on-palm.
But many DeafBlind people use a mix of methods, depending on who
they are communicating with.

I use tactile signed English with people who can sign and tactile
fingerspelling with my mother and son. I use text messages and
email with my father. I use my voice to communicate with hearing
people and oral deaf. I use shaky sign language to communicate
with Deaf and Deafblind people.

In certain situation, I ask people in the public to use
print-on-palm. That's one method that anyone can do. But some
people freak out because a DeafBlind person is talking to them,
or because they don't want to touch you.

Even some Deaf people refuse to use tactile sign language. If
they will talk using another person as an interpreter, it doesn't
bother me. But I get upset when people blow me off just because
I'm DeafBlind and use tactile sign language.

All Deaf people and all DeafBlind people have experienced this.
Someone is speaking or signing, and you don't understand right
away. You asked them to repeat, and they say, "never mind." Deaf
people do this to DeafBlind, Or they just walk away, which is a
total communication killer when you can't see where they went.

I'm not saying that all Deaf people do this. But it makes you
wonder when they complain about how hearing people treat them,
and they turn around and do the same thing to us.

DeafBlind culture is another tough topic. How can there be a
united culture with all that variety? Some people say that
DeafBlind culture is a sub-culture of Deaf culture. For some, it
is. They are Deaf with low vision or Usher syndrome. ASL is their
first language. They say they are DeafBlind culture, but what
they describe is clearly Deaf culture.

I used to say there was no such thing as DeafBlind culture. It
was either Deaf culture or DeafBlind community. I don't believe
that anymore.

What's changed my mind? The answer is ProTactile: The DeafBlind
way. Just so you know... When ProTactile was still new, it was
written as pro-tactile, no caps and with a hyphen in the middle.
Just like DeafBlind became word, so has ProTactile, and we use
caps for the P and T.

Some people make the mistake in thinking that ProTactile means
tactile sign. It does not. ProTactile can be used with tactile
sign language, or it can be used with visual sign. It can be used
by one person signing visually with another person signing using
tactile while they talk to each other.

ProTactile means touch. It is all about touch during
communication. People who are Deaf have their visual signs and
facial expressions. That's their way. We have touch. That's the
DeafBlind way.

With ProTactile, people who are DeafBlind have 100% access to the
communication setting through touch. They use constant touch to
provide and receive feedback.

A Deaf or hearing person will nod. We use tapping to show we are
listening. This tapping could be on the arm or knee or back. The
intensity of the tapping varies depending on how interested the
other person is in what you are saying, just like with nodding.

You are telling a story and the person is casually tapping. They
are listening. Then you say something about Oreo brownies, and
they tap like crazy. They are very interested, very exited. They
are saying, "Give me a brownie right now!" You know they like
Oreo brownies.

Maybe you start talking about football. They don't tap much.
Their attention is wandering. They don't give a hoot about
football. It's time to change the subject.

There are other ways to give feedback through touch. For example,
you can show a smile or a frown. You can show anger. There are
all sorts of emotions. You don't have to interrupt the flow of
conversation to sign, "I am angry." You make the signal on the
other person's body as they communicate. It's much more natural.

Take laugher for example. You say something you think is kind of
funny. The response is ha ha ha ha. Without facial expression to
go with it, that sign is so bland, so fake. It's devoid of
emotion. Ha ha ha translates into, "You just said the stupidest
thing I've ever heard in my life."

You need to use the claw. In the DeafBlind community, we say
"Feel the Claw." It means "feel the laugher." Just like with
tapping, you can control the intensity to show how hard you are
laughing. Maybe a little bit means, "Hey, that's funny." Or you
can really go at it to say, "Oh, my god, I'm dying. You are
hilarious. I think I'm going to pee my pants."

You give this feedback while the communication is happening.
There's emotion and feedback without having to stop to say. "I am
laughing at you." It's awesome!

I like to use PT on my back with an interpreter when I'm giving a
presentation. That way I know how my audience is reacting. Are
they half asleep? Is someone sticking their tongue out at me?
I'll know. With ProTactile, I will know.

ProTactile was created by two DeafBlind women from Seattle. Did
you know that Seattle has the largest DeafBlind population in the
United States? They have a real community there and lots of
services. More DeafBlind people keep moving their. They continue
to develop PT, and it's spreading around the country.

ProTactile is a socio-cultural movement. It's binding us together
through touch. Now I know that, yes, there is a DeafBlind culture
that is centered around ProTactile.

If you look up ProTactile or PTASL (ProTactile American Sign
Language) you will find a wealth of information and research.
Also be sure to watch the videos by AJ and Jelica, the women who
created PT. You can find those on

I'm on a Facebook groups for people who are DeafBlind called
DeafBlind Though. It's a great group that only DeafBlind people
can join.

I was working on this presentation, and someone posted on the
group asking members how they identify. This was quite a

The responses are interesting. People keep saying things like,
"I used to identify as Deaf" or "I used to identify as Usher
Syndrome" or "I used to identify as Deaf with low vision."

The ending to each comment is the same, "... but now I identify
as DeafBlind."

What's changed? Not their vision and hearing, or not too much.
It's the ProTactile movement, the DeafBlind way. When they say,
"I'm DeafBlind," they mean "I'm DeafBlind culture."

Our island is still an island, but it's growing. We are more
united now. It's wonder to finally find a place where I belong.

Angie C. Orlando

September 2018

Permission is granted to share.

Wednesday, September 19, 2018

My **New Book** Please preorder now!

** New Book **
Through the Tunnel
Becoming Deafblind
By Angie C. Orlando

Using a mixture of prose and poetry, Angie C. Orlando shares indelible stories about growing up in a small Ohio town, complete with posing for family pictures, watching high school football games, playing a saxophone in a marching band. Yet she is equally funny and unflinchingly honest about how classmates, medical professionals, and others have viewed her multiple disabilities, all of which had gradually become apparent over time. Through it all, she leaves her abusive husband and endures her brother’s suicide to become her own person.
Pre-Order by going to

Through the Tunnel: Becoming DeafBlind.

Angie C. Orlando.
ISBN: 978-1-941960-11-0
Pub date: November 1, 2018
Preorders will ship: October 15, 2018

Friday, July 20, 2018

I'm not your deaf proof

I love students, and there are many around. Kent State University
has excellent 4-year programs in American Sign Language and
Educational Interpreting. The University of Akron offers ASL as a
foreign language. When I host Silent Social at Summit Mall
gatherings, most students who attend are from KSU and Akron. We
also see students from Cleveland State University, Stark
University, Tri-C and more. Plus some Deaf services centers,
libraries and high schools have ASL classes, and those students
will show up.

It's the same with my other organization, Northeast Ohio
DeafBlind Association. Students often make up the majority of
volunteers. We couldn't host events without them.

Other people attend these events. They may be interpreters,
teachers, people who are Deaf and those who are DeafBlind. We get
a good assortment of people. But this message is for the students
and the educators who make the rules.

Deaf people are not proof. They should not be objectified or used
in any way. When people who are Deaf need to sign papers and have
their picture taken as proof for a school project, that's exactly
what happens.

I'm partially sympathetic. I was a student once and had to have
people sign as proof of communication or attendance. I know how
nervous students are, and how good it feels to get the task over

I'm also frustrated. I set up the socials for the Deaf community.
The objective is for people to have fun while communicating in
their language, sign language. We can't do that when we must sign
those papers and let strangers take our pictures. We can't relax
and be normal, because the flocking students remind us that we
are abnormal.

Here's my story:

On a Friday, in mid-April, 2017, I was at Summit mall for the
twice-a-month Deaf social. There was a heavy turnout of students
from the University of Akron. I assumed their due date was
approaching. I signed around ten papers that night.

The next evening was the Deaf Prom, which is hosted by the
University of Akron ASL Club as a way to give back to the Deaf
community. It was my first time attending. I had a wonderful
night and was thrilled to be voted prom queen.

When the event was over, my friend took things out to her car,
while I waited inside. A whole group of people lined up to talk
to me. I was overwhelmed. I felt like a celebrity The magic faded
as student after student asked for my picture and signature. Some
actually talked to me. Other's got straight to the point and
thrust a pen in my hand.

It seemed like "giving back to the community" had a catch to it.
I was being used as proof. I was being used and didn't like it
one bit.

I swore I would no longer sign those papers. At the next Silent
Social at Summit Mall, a really sweet student talked to me for a
long time. She worked hard to use her ASL skills. It was a
pleasure to talk to her. When she asked for my picture and
signature, I willingly gave it to her... and everyone else for
over a year.

I returned to the Deaf Prom this year and was again voted prom
queen. I told my friend that I would sign no papers that night.
She made sure no one asked. I felt like a normal person. It was a
great feeling.

I continued to sign student forms. Sometimes I was happy to do
it. Sometimes I was reluctant. We all know that some students get
what they need as quick as possible and leave the event. I signed
and smiled for cameras.

Recently, on July 8th, NEODBA hosted a picnic and pool party in
Mayfield Village. It was a huge success with around 35 people in
attendance. As usual, we had a lot of students. I think it's a
great experience for them. When one asked for my signature, I
signed the paper. When another asked for my picture, I let her
take it. Things got out of hand. I was standing barefoot on the
cement pavilion, leaning against a table for support, face
contorted with pain and my shorts half down when another student
wanted my services. I broke. I will no longer sign papers. I will
no longer let students take my picture. I will not be anyone's

When this happened, I was not in the mood to chat. I wanted to go
swimming. More students kept showing up. I finally got my shoes
and braces off. I already wore my swim suit. I needed to take off
my shorts. To do that, I had to stand up. I had fallen a few
weeks prior and sprained my foot in two places. It hurt like hell
to stand. It felt ridiculous to be caught with my shorts half

I wonder about all those pictures that got turned in for points.
Did the teacher laugh? Did she think, "Angie again??" Did
students post the pictures on social media? Did they say, "Look,
I met a real, live Deaf person?"

I have heard from local individuals who are Deaf who refuse to
attend the mall social because they fell hunted and used by
students. I'm torn. Students are important. They need to practice
their ASL skills. They need experience. I want them to attend.
The real focus, however, is on the Deaf and DeafBlind community.
These events are their time... our time. Can we come together in
peach, share and chat without the need to sign papers and have
our pictures taken?

There has to be another way for students to prove that they have
attended events. Keep in mind that Kent State no longer requires
signatures and pictures. Other colleges need to do the same. I
say again, I love students. I hope you will attend and enjoy
these events. But don't ask me to sign and smile. I'm done being
your Deaf proof.

Angie C. Orlando
July 2018

Permission is granted to share.

Tuesday, May 22, 2018

On your birthday, 2007

May 22, 2007

Dear Joseph,

Happy Birthday! Today you are six years old. Six! Such a big
number for such a big boy.

This has been a busy, exciting, eventful and traumatic year for
you, Joseph. There have been a lot of changes in your life. This
is the year I left your father, and we moved to Ohio to live with
Grandma Lois and Grandpa Pete. I did what I believed was best for
you. I know becoming a child of divorce is horrible and scary,
but I believe in my heart I had to do it to save us. I can only
hope that some day you will understand this and forgive me for
any pain I caused you.

You are absolutely thriving in your new life in Ohio. You
attended Kindergarten at Longcoy Elementary School, my old
school. Miss Pletzer is an awesome teacher, and you've had a
wonderful school year. This has been the magical year that you
learned to read, and what a reader you have become! We call you a
reading machine. I was amazed as you learned more skills and
figured out how to put letters together to make words, and words
together to make sentences. It is now the end of the school year,
and you are reading and writing at mid-first grade level. Way to
go, Joseph!

You have made advancements in your social development. You love
being with your friends more than anything in the world. It must
be wonderful to have Robbie and Alex to place with each day. I
just wish you boys wouldn't get in quite so much trouble. (smile)

This is the year you learned to ride your bike without training
wheels. You probably think that was your most important
accomplishment ever. Oh how you love to ride your bike!

You have been busy with activities this year. You enjoyed story
hour, swimming lessons, soccer, ice skating, and tee-ball. You
love to go to the playground, especially the Huge Playground in
Stow. You have a special bond with Grandpa Pete, and you two
often go to Burger King Of course, you like going to movies and
special events with your friends. Finn is a great friend for play

I have been so proud to watch you grow and gain confidence in
yourself. You are no longer a shy, little loner. You are happy
and love to try new things and meet new people. You even try to
eat new foods and have discovered you like peas and chips with
salsa. And we continue to have a never ending argument about
crust. I can understand that many children do not eat sandwich or
toast crust. But I swear Joseph... apples and English Muffins do
not have crust!

You and I have a pretty good relationship. You think I'm funny,
and tell me I'm silly. I love to make you laugh. Being your mommy
is wonderful. You are no longer my little
baby, yet, you will always be my special boy.

Have fun being six!


Tuesday, March 13, 2018

disabled voices online

View online:

Braille means a lot to me. I love it very dearly and it makes
much of what I do considerably easier. But for this week's
Disabled Voices Online participant, it is her main method of
communication and
 without it she very literally wouldn't be able to run her blog.
Angela is an American Deafblind blogger who shares her
experiences of the world through her blog Deaf Blind and
Determined. You can find her blog at:
What inspired you to start your blog?

 I had a powerful story to tell, in terms of leaving my abusive
husband and winning sole custody of my young son. I wrote a long
article that was chopped to bits and published in a DeafBlind
related newsletter. Later, the entire article was included in a
Deaf e-zine. I was surprised by the strong, positive reaction. My
husband had made me feel stupid, as if I could do nothing right.
But people were moved by my writing and wanted to know more about
my life, not just the big, sensational court story, but about
everyday things. Many people were encouraging me. One day I
decided to just go ahead and start blogging.

How did you find the accessibility of the initial set up of the

 I couldn't do it. I picked BlogSpot because another Deafblind
writer used it. She was Deaf with low vision and used enlarged
print. I'm fully deaf and blind and read using braille. Setup was
not accessible to my technology. I had a friend do it for me.

How do you find the accessibility of regularly running the blog?

I still have issues with accessing the website and managing the
blog. Some parts aren't accessible. Others are partially
accessible. I can't do what I want on my own. I always have to
ask my friend for help, and I feel guilty. I want to be in charge
of my own page.

What I like about Blogspot, however, is that I can write my blogs
offline and then upload via email. If it wasn't for the post
through email feature, I would be unable to have this blog.

How do you promote the blog?

It's in my signature file for email. When I post a new blog, I
put up a notice on both my private and public Facebook pages.

What assistive technology do you use to help you run your blog?

I use an old device called a BrailleNote Apex. It is a note taker
made by Humanware. I am most comfortable writing and revising on
that device, plus setting up the layout. The downside is that the
web program is very limited. This is why my friend helps as

What do you feel your blog has achieved?

My blog has reached out to other people who are DeafBlind and
shows them that they are not alone. Others have the same problems
and the same issues. People with other types of disabilities and
even non-disabled people have told me they relate to my stories.

At the same time, my blog demonstrates that, yes, I have severe
disabilities, but I'm still a typical person with the same kinds
of fears, dreams, love and experiences. My way might be
different, but it's not wrong.

What problems have you faced with the blog and how have you
overcome them?

The first problem, after set up, was that I was afraid my
ex-husband would find my blog and use things against me in court.
I was afraid of him knowing anything about my life. For the first
few years, my blog was anonymous and I used fake names. Later, I
realized there was nothing wrong with what I was posting, that I
had nothing to be afraid of, so I finally added my name to the
page. I still use fake names for my ex-husband and some other

Another problem was that I couldn't read full comments and needed
my friend to approve them for me. She also has to remove spam.

For a while, I also blogged for Kent Patch. There were a few
flamers there who insisted I didn't exist or that my story
couldn't be real. I mostly let my friends and family write
comments to set them straight. The controversy seemed to get more
people reading my blog and only a few were nasty. Patch closed
down around five years ago. I have not experienced that kind of
conflict on BlogSpot.

Which of your posts is your favourite and why?

My favourites are the different versions of "Meaning of
Disability" and the more recent "Deaf, Blind and Determined:
Meaning of Disability." These are "scripts" I write to prepare
for an annual presentation for medical students at the Cleveland
Clinic Foundation. The new one was for a presentation for
students at the West Virginia School of Osteopathic Medicine.

I answer the questions in writing and then practice reading out
loud. As I do that, I find ways to improve my answers. I work on
the writing and reading aloud together. The end result is a
well-written, inclusive story of many aspects of my life. Each
year that I do this, I improve what I wrote and make changes as
needed. The blogs represent much growth in both writing and my
life as a whole.

What advice would you give to other Deafblind people who want to
start a blog?

 Write from the heart and tell your experiences as they happen,
as if you are telling a story. Add dialogue, humour and
characteristics that make it about you. People want to be engaged
and learn, but they don't want to read a bland lecture. Make it
lively and fun, but also emotional and real.

How do you think the internet helps Deafblind people?

The internet brings us together and gives us a voice that wasn't
available long ago. Through the web, I've made many friends who
are DeafBlind, first through email lists and now on Facebook. We
have a way to get involved with the world because of the
internet. In a lot of ways, disabilities don't matter, unless
it's an accessibility issue.

The internet provides a way to access information, whether you
are looking for job information or shopping or seeking support or
looking for something to read. I lived an entire year of my life,
in 2002, fully DeafBlind and unable to feel my hands. People
communicated by printing letters on my face. I knew absolutely no
idea what was going on in the world. My husband used strange
words like SARS, blog and MOAB, and I didn't have a clue what he
was talking about.

My hands finally healed and I learned braille, but there aren't
many braille resources out there today. It's mostly audio for
hearing blind people. Once I got on the internet with my first
BrailleNote product, I felt my life return to me. I could read
books, write emails to friends and read newspapers. I wrote an
essay about this that won first prize in an international braille
writing contest.

How do you think the internet could be improved for Deafblind

There's always room for improvement. For example, people who are
Deaf with low vision can read print or enlarged print. Colour
contrast is an important issue. On many websites, they can't
control the size of text or the colours.

My issue is braille accessibility. Just because a company
announces that their site is "Jaws accessible," does not mean
it's braille accessible. Most people who are blind listen to
voice. Voice is more accessible than braille. BlackBoard is a
popular software system used by universities for online classes.
It's supposed to be accessible to people who are blind. I went
through grad school and never could access it.

Also, braille technology is super expensive. Maybe I can't afford
the top technology, so I'm using out-of-date tech which makes
much of the internet inaccessible. It's fantastic what technology
can do today, but with the price of braille equipment, I can't
keep up. More and more doors are being shut to me.

 There are so few DeafBlind individuals. It's not cost-efficient
for a company to think of us when developing their website or
product. They still claim they are accessible and maybe they are
for hearing blind. It's totally different for braille readers.

Do you do anything else online? If so, where else can we find you

 I'm most active on Facebook. I run several groups and pages on
Facebook that I invite people to join or like.

 ** Angie C. Orlando: DeafBlind and Determined (public page)

** Northeast Ohio DeafBlind Association (public page for the

 ** Deaf-Blind Parents (closed group for individuals who are DB
and have children. Parents of DB children are also welcome)

 ** PHARC Support (closed group)

** Kent RHS Band Geeks (Now and Forever) (closed group relating
to anyone involved in band, orchestra, flags, etc. at Theodore
Roosevelt High School)

 ** Deaf Night Out: Northeast Ohio (public group related to deaf
social night at Summit Mall)

Thanks to Angela for taking part. You can visit her blog here:

Angie C. Orlando

March 2018

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