Angie C. Orlando - Deaf-Blind and Determined

contact me at neodba.info@gmail.com.

Friday, August 11, 2017

deaf, blind and determined

Deaf, Blind and Determined: The Meaning of Disability

Watch the video:

https://m.youtube.com/watch?v=WI6UCfYVD4I

August 4th, 2017

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

North Lewisburg, WV


One

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
me.

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."


Two

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
her.

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.


Three

In what ways has your disability impacted your immediate family
members?

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
birthday.

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
life.

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.


Four

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
happy.

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
inspiring?

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.



Five

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.


Six

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

Friday, July 28, 2017

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What Is Airbnb?

Airbnb is an online commercial center where visitors go to discover a bed to stay and has list their room/property for lease.

It is particularly similar to a lodging, be that as it may, visitors remain in the hosts home, and visitors don't get the standard ruffles of inn attendant. I'll go over the master's and con's of airbnb later.

Airbnb works in around 35 000 urban areas and in 200 nations. When you go to another city, you require some place to remain. You may pick a lodging, or possibly an inn, however Airbnb allows you to live in another person's home. This might be exactly what you're searching for, or it may not be. In any case, Airbnb is commonly less expensive than your conventional lodging. Also, that is a gigantic favorable position for Airbnb.

 

How Does Airbnb Work? The procedure

How Guests Use Airbnb

As a visitor, you look through the properties recorded in the city you are searching for a room in. A coolest aspect regarding Airbnb is that they have pretty much every kind of "room" accessible. You can discover only a solitary room (like leasing a solitary room back home), a whole house, condo, a chateau, estate, and even vessels like yachts.

As you channel your outcomes, you can see pictures of housing and read the host's profile to perceive what sort of individual they are. Now and then you will be living with the host, and now and then the host won't be there (you have the whole convenience to yourself). Whatever the case, you need to know who you will be leasing from.

You'll discover this data as you read the convenience portrayal. You will likewise need to message the host if this data isn't clear. You can message the host and make inquiries about the settlement or anything truly. I think this is a critical stride, since you get the chance to perceive what your host resembles. One of the greatest grievance about utilizing Airbnb is that the host wasn't satisfactory.

You can channel your outcomes by numerous things, in particular value, area, sort of settlement, courtesies, and close to specific purposes of intrigue. When you discover something you like, I'd message the property have and pose some broad inquiries you'll probably have. Above all, you need to ensure the property is accessible for the date you need it.

In the event that you need to proceed with the reservation, you present your reservation with your installment data. Presently, Airbnb will gather your installment after the host acknowledges your demand. In case the host decays your demand, no cash will be gathered. Once the host acknowledges your installment, your cash will be "held" via Airbnb until 24 hours after you check in. They have this approach set up to guarantee the two gatherings are content with their exchange. I figure 24 hours is sufficient time to make sense of that. The assets are discharged and given to the host, less expenses. Cheerful days.

 

How Airbnb functions

Airbnb works in 190+ Countries

 

How Hosts Use Airbnb

As a host, you get the opportunity to profit from the property you possess. Many sorts of individuals set up their own homes for arbitrary outsiders to utilize. For instance, you may have an additional room in your home and you need to make a smidgen of salary from it. You could lease locally, or utilize an administration like Airbnb to help lease your unused space.

Or, on the other hand maybe you travel a considerable measure and in some cases you're away for a couple of months. Rather than leaving your home unfilled and unused, you could profit off it while you are away by leasing it out to individuals who could utilize your home. In any of the cases, you can make a touch of side money with the land you possess.

To list your property on Airbnb, you'll have to agree to accept a record, be affirmed, and enter data about your property for lease. It's a genuinely simple process. Once your property is recorded, kick back and sit tight for the reservation solicitations and individual messages come through.

Much the same as how visitors can see your own profile, you can see visitor profiles too. Regularly however, the visitor might not have much to their profile, but rather you should open up a road of correspondence to see who will conceivably be experiencing your property.

Keep in mind, you are putting forth your home up to others. The greatest potential issue has have is that individuals will harm, take, or generally wreck your property. Airbnb offers $1,000,000 in harms to shield their hosts from these sorts of issues (with specific confinements and impediments).

 

The Pro's and Con's of Using Airbnb

Master's of utilizing Airbnb

  1. Can discover a wide range of properties, from single rooms to chateaus
  2. Price of Airbnb lodging is normally less expensive than a run of the mill inn
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  5. Can lease property for only a day or two, or settle down for a couple of months
  6. Hosts get the opportunity to meet visitors, in some cases habitually, making life intriguing and fun
  7. Hosts can profit on generally squandered space

 

Con's of utilizing Airbnb

  1. Hosts can be unusual or not of course, or have negative behavior patterns like being boisterous late during the evening
  2. Property recorded could be distinctive that delineated
  3. You need to pay fee's, somewhere in the range of 6%-12%, and remote exchange charge's if required, and also a VAT impose in a few nations

 

Rundown of What Airbnb is

Whenever you go on a family excursion to Hawaii, or visit Chicago with a few companions for the end of the week, observe Airbnb properties. You could very well wind up taking a gander at a private beachside estate for just you and your family, or a little downtown flat room near night life in Chi town.

As a visitor of Airbnb, your choices are abundant in each city Airbnb works in. Simply more decisions in the variety of housing accessible to explorers. Nonetheless, costs of Airbnb lodging are normally less expensive, and cash talks! As an Airbnb have, you can profit with your generally unused property.

Having said all that, there are some potential issues with Airbnb, similar to the host and their property not being as portrayed or delineated, or terrible visitors who harm your property or take your stuff. Be that as it may, hello, I prescribe you give it a shot in any event once. You may very well discover you'll need to do it once more.

 

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Monday, July 3, 2017

Vukovar Travel Guide

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Sunday, July 2, 2017

Greater Columbia Travel Guide

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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
adult."

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
movie.

"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.

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Friday, June 16, 2017

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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

http://www.kiwanisofkirtland.org/Berry-Festival.html

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
Orlando.
email: dotbug3@gmail.com
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.

http://www.kiwanisofkirtland.org/Berry-Festival.html

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
Orlando.
email: dotbug3@gmail.com
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.

Saturday, April 15, 2017

deaf prom

As the big date approached I couldn't resist playing the drama
queen on Facebook:

It's going to snow on my prom!

Prom jitters... They are serving pasta, and i'm wearing
off-white!

Time to Journey to Neverland. My date is a 19 year old hottie
in a lavender dress. I wear the pants in this relationship.

The 2nd annual Deaf Prom was held on April 8th at Quaker Square
in Akron, Ohio. The prom is an awareness and social event
sponsored by the University of Akron ASL Club.

I didn't attend my high school prom, Homecoming or any other
formal events. Boys tended not to like girls with both hearing
and vision disabilities. I never went on a date or had a
boyfriend.

It didn't bother me that I missed the prom. The 18 year old me
operated in survival mode. the less time out in the big, bad
world, the better to reduce anxiety and humiliation. I had no
desire to attend a normal teen right of passage. It didn't bother
me... and that's what bothers the adult me.

I know what you are thinking, and you are wrong. This isn't a
story about an adult going back to re-do the past she never had.
This is the tale of an adult with a sense of humor who wanted an
exciting night out with people who can speak her language -- sign
language, because, yes, she has some icky disabilities that makes
interacting with the public a challenge.

I was pretty in pink pants... dusty rose jeans, that is. If I'm
going to do something, I'll do it my way. No chance I'd buy and
wear an actual prom dress. But the cream colored sweater I wore
was kind of fancy. With dangling gold and cream earrings, a
little makeup and rose nail polish, I looked like a girl. (My
"lipstick" was Dr. Pepper flavored lip gloss... more doing it my
way.)

Miranda, a Kent State interpreter student, was my "date." She
bought us both flowers made to match our dress colors. Mine had
baby breath, lilies and flowers in purple and pink. I used the
neat magnets to attach it to my sweater. Miranda had a wardrobe
crisis when she knocked hers off and the inner magnet dropped
into her bra.

My friend Greg got dinner for me: rigatoni, a brad stick, salad
and sugar cookies. I did not make a mess of myself. Someone else
spilled his entire plate on his clothes... but the prom went on.

We were given party favors -- each person got a pair of
sunglasses with "University of Akron ASL Club" written on the
sides. A trend-setter put his on for dinner. Soon we were all
decked out in them. But an announcement was made asking us to
take off the sunglasses. They interfered with reading facial
expressions, which is a vital part of sign language.

After dinner, Miranda and I went to the night, starry sky back
drop for formal pictures... and goofy ones with us wearing bright
feather bows and another with me in Mickey Mouse ears and Miranda
in a hat with propellers. (I'm told I am smirking in that one.)

The prom guests were adults and college students, but the
atmosphere was pure high school awkwardness on the dance floor.
Everyone was waiting for someone else to start. I "jumped in" for
YMCA and the worm, plus other fast dances. I sat in my mobility
chair while Miranda and some guys helped me with the moves.

Some things have changed. Nominations for king and queen were
taken via text messages. The top five hearing nominees and top
tow deaf moved onto the final round of voting. Alex and Avery
were voted hearing prom king and queen. Louis was voted deaf king
for the second year in a row. At this point, I told Miranda I
wanted to leave right away. She just laughed.

The deaf prom queen was............... me!

I let out a huge mock, shock reaction as I went forward for my
crown. Louis and I did a slow dance together. It wasn't a dream
come true, I never dreamed I'd be prom queen. It was still pretty
cool. I accepted congratulations from my fans and smiled for
1,000 pictures.

From being a master to a prom queen at age 43... It's not
inspirational, just fun.

Angie C. Orlando
April 2017
Permission is granted to share.

Tuesday, April 11, 2017

RE: [DBMi] deaf prom

Congrats, Angie for being prom queen.
Red

-----Original Message-----
From: dbmisfits@googlegroups.com [mailto:dbmisfits@googlegroups.com] On Behalf Of Angie
Sent: Tuesday, April 11, 2017 7:22 PM
To: my blog <dotbug3.blogbug@blogger.com>
Subject: [DBMi] deaf prom

As the big date approached I couldn't resist playing the drama queen on Facebook:

It's going to snow on my prom!

Prom jitters... They are serving pasta, and i'm wearing off-white!

Time to Journey to Neverland. My date is a 19 year old hottie
in a lavender dress. I wear the pants in this relationship.

The 2nd annual Deaf Prom was held on April 8th at Quaker Square in Akron, Ohio. The prom is an awareness and social event sponsored by the University of Akron ASL Club.

I didn't attend my high school prom, Homecoming or any other formal events. Boys tended not to like girls with both hearing and vision disabilities. I never went on a date or had a boyfriend.

It didn't bother me that I missed the prom. The 18 year old me operated in survival mode. the less time out in the big, bad world, the better to reduce anxiety and humiliation. I had no desire to attend a normal teen right of passage. It didn't bother me... and that's what bothers the adult me.

I know what you are thinking, and you are wrong. This isn't a story about an adult going back to re-do the past she never had.
This is the tale of an adult with a sense of humor who wanted an exciting night out with people who can speak her language -- sign language, because, yes, she has some icky disabilities that makes interacting with the public a challenge.

I was pretty in pink pants... dusty rose jeans, that is. If I'm going to do something, I'll do it my way. No chance I'd buy and wear an actual prom dress. But the cream colored sweater I wore was kind of fancy. With dangling gold and cream earrings, a little makeup and rose nail polish, I looked like a girl. (My "lipstick" was Dr. Pepper flavored lip gloss... more doing it my
way.)

Miranda, a Kent State interpreter student, was my "date." She bought us both flowers made to match our dress colors. Mine had baby breath, lilies and flowers in purple and pink. I used the neat magnets to attach it to my sweater. Miranda had a wardrobe crisis when she knocked hers off and the inner magnet dropped into her bra.

My friend Greg got dinner for me: rigatoni, a brad stick, salad and sugar cookies. I did not make a mess of myself. Someone else spilled his entire plate on his clothes... but the prom went on.

We were given party favors -- each person got a pair of sunglasses with "University of Akron ASL Club" written on the sides. A trend-setter put his on for dinner. Soon we were all decked out in them. But an announcement was made asking us to take off the sunglasses. They interfered with reading facial expressions, which is a vital part of sign language.

After dinner, Miranda and I went to the night, starry sky back drop for formal pictures... and goofy ones with us wearing bright feather bows and another with me in Mickey Mouse ears and Miranda in a hat with propellers. (I'm told I am smirking in that one.)

The prom guests were adults and college students, but the atmosphere was pure high school awkwardness on the dance floor.
Everyone was waiting for someone else to start. I "jumped in" for YMCA and the worm, plus other fast dances. I sat in my mobility chair while Miranda and some guys helped me with the moves.

Some things have changed. Nominations for king and queen were taken via text messages. The top five hearing nominees and top tow deaf moved onto the final round of voting. Alex and Avery were voted hearing prom king and queen. Louis was voted deaf king for the second year in a row. At this point, I told Miranda I wanted to leave right away. She just laughed.

The deaf prom queen was............... me!

I let out a huge mock, shock reaction as I went forward for my crown. Louis and I did a slow dance together. It wasn't a dream come true, I never dreamed I'd be prom queen. It was still pretty cool. I accepted congratulations from my fans and smiled for
1,000 pictures.

From being a master to a prom queen at age 43... It's not inspirational, just fun.

Angie C. Orlando
April 2017
Permission is granted to share.

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deaf prom

As the big date approached I couldn't resist playing the drama
queen on Facebook:

It's going to snow on my prom!

Prom jitters... They are serving pasta, and i'm wearing
off-white!

Time to Journey to Neverland. My date is a 19 year old hottie
in a lavender dress. I wear the pants in this relationship.

The 2nd annual Deaf Prom was held on April 8th at Quaker Square
in Akron, Ohio. The prom is an awareness and social event
sponsored by the University of Akron ASL Club.

I didn't attend my high school prom, Homecoming or any other
formal events. Boys tended not to like girls with both hearing
and vision disabilities. I never went on a date or had a
boyfriend.

It didn't bother me that I missed the prom. The 18 year old me
operated in survival mode. the less time out in the big, bad
world, the better to reduce anxiety and humiliation. I had no
desire to attend a normal teen right of passage. It didn't bother
me... and that's what bothers the adult me.

I know what you are thinking, and you are wrong. This isn't a
story about an adult going back to re-do the past she never had.
This is the tale of an adult with a sense of humor who wanted an
exciting night out with people who can speak her language -- sign
language, because, yes, she has some icky disabilities that makes
interacting with the public a challenge.

I was pretty in pink pants... dusty rose jeans, that is. If I'm
going to do something, I'll do it my way. No chance I'd buy and
wear an actual prom dress. But the cream colored sweater I wore
was kind of fancy. With dangling gold and cream earrings, a
little makeup and rose nail polish, I looked like a girl. (My
"lipstick" was Dr. Pepper flavored lip gloss... more doing it my
way.)

Miranda, a Kent State interpreter student, was my "date." She
bought us both flowers made to match our dress colors. Mine had
baby breath, lilies and flowers in purple and pink. I used the
neat magnets to attach it to my sweater. Miranda had a wardrobe
crisis when she knocked hers off and the inner magnet dropped
into her bra.

My friend Greg got dinner for me: rigatoni, a brad stick, salad
and sugar cookies. I did not make a mess of myself. Someone else
spilled his entire plate on his clothes... but the prom went on.

We were given party favors -- each person got a pair of
sunglasses with "University of Akron ASL Club" written on the
sides. A trend-setter put his on for dinner. Soon we were all
decked out in them. But an announcement was made asking us to
take off the sunglasses. They interfered with reading facial
expressions, which is a vital part of sign language.

After dinner, Miranda and I went to the night, starry sky back
drop for formal pictures... and goofy ones with us wearing bright
feather bows and another with me in Mickey Mouse ears and Miranda
in a hat with propellers. (I'm told I am smirking in that one.)

The prom guests were adults and college students, but the
atmosphere was pure high school awkwardness on the dance floor.
Everyone was waiting for someone else to start. I "jumped in" for
YMCA and the worm, plus other fast dances. I sat in my mobility
chair while Miranda and some guys helped me with the moves.

Some things have changed. Nominations for king and queen were
taken via text messages. The top five hearing nominees and top
tow deaf moved onto the final round of voting. Alex and Avery
were voted hearing prom king and queen. Louis was voted deaf king
for the second year in a row. At this point, I told Miranda I
wanted to leave right away. She just laughed.

The deaf prom queen was............... me!

I let out a huge mock, shock reaction as I went forward for my
crown. Louis and I did a slow dance together. It wasn't a dream
come true, I never dreamed I'd be prom queen. It was still pretty
cool. I accepted congratulations from my fans and smiled for
1,000 pictures.

From being a master to a prom queen at age 43... It's not
inspirational, just fun.

Angie C. Orlando
April 2017
Permission is granted to share.

Tuesday, March 14, 2017

neodba event flyer

Upcoming event from:
NORTHEAST OHIO DEAFBLIND ASSOCIATION

VISIT COVENTRY VILLAGE

Date: April 23, 2017

Time: 1:00 to 5:00 PM

We will meet for lunch, then hang out and visit the stores. There
is something for everyone at Coventry Village, and things to do
that fit everyone's budget. JOIN US!

1:00 PM Meet for lunch at Mongolian Grill, 1854 Coventry Road,
Cleveland Hts.

After lunch, explore the village! Check out stores; Big Fun, City
Buddha and In the 216. Visit Coventry Library (they have an
extensive ASL and Deaf culture section!) And more!

Anyone with combined vision and hearing loss is invited to
attend, plus family, friends, interpreters, SSP's and volunteers.

To RSVP, ask questions or sign up as a volunteer, contact Angie
Orlando.
email: dotbug3@gmail.com
text: 330-221-6499

Please respond by April 15 so we can reserve enough seats at the
restaurant.
Help us by sharing the attached flyer with friends and on
facebook, and print and pot at colleges, churches and other sites
in the Deaf community. (Information on the flyer is the same as
the above text.)

Monday, January 30, 2017

grief

Grief

NF2 is a terrible disease
Holly has NF2
Her head is full of tumors

NF2 is a killer
Holly is end-stage
She will live forever

On January 22nd, I was reading my Facebook newsfeed when I came
across an odd message. Actually, it was two, because the first
person shared someone else's post.

It was a message I've seen in one form or another, posted by
Holly herself, the kind that drips with grief.

"Damn! Another one gone from NF2"

Not a funny message, but I laughed. The way the woman tagged in
Holly Alonzo, it looked as if Holly was the one who died. Ooops!

The second post was apparently written by Holly Alonzo.

"RIP sis"

What? Holly's sister died? She didn't have NF2. It made no sense.
I'm supposed to be intelligent, but the pieces wouldn't come
together, a puzzle that didn't want to be solved.

No no no no no no

The tears were falling as I read Holly's timeline.

"Goodbye Holly, I will always love you"

"You are in a better place now, no more pain"

"God has called his angel back to Heave"

No no no no no no

Holly has NF2
She is my friend
Holly is invincible

Holly's head is full of tumors
She could die
What about her son?

We are both fully deaf and blind with neuro-related issues. I
have PHARC. People don't die from PHARC. Holly has NF2. People
with NF2 might die in their 20's or 30's. I'm 43. Holly turned 30
on January 5th. I have a son named Joseph, age 15. Holly has a
son named Isaiah, age 9. Mommies don't die.

Neurofibromatosis type 2

Can you say it? Can you spell it? If so, I'm sorry for you.

noncancerous tumors throughout the nervous system vestibular
schwannomas benign, slow-growing tumors changes in vision
changes in sensation numbness weakness fluid buildup in the
brain deafness severe balance problems facial nerve
paralysis spinal cord compression swallowing difficulties
eye function complications Autosomal dominant disorders

Neurofibromatosis type 2

Can you say it? Can you spell it? If so, I'm sorry for you.

As long as the tumors can be removed, a person with NF2 is
not considered in terminal danger.

Holly had surgeries to remove tumors
She had many surgeries
Holly almost died in surgery many times

Holly's head is full of tumors
No more room for tumor growth
Holly is end-stage

She will die.

No, she won't die.

Mommies don't die.

Friends don't die.

Holly is dead.

Please help Holly's family. Edward is blind, and Isaiah is only 9
years old. You can make a donation at any Regions bank

In lieu of flowers, memorial donations can be made to the
Memorial Fund set up for Holly Gail Alonzo at Regions Bank to
help her husband and young son.

Angie C. Orlando
January 2017

Followers