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

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