meaning of disability #5

Meaning of Disability
March 3rd, 2015

Present to students and staff at the Cleveland Clinic School of
Medicine

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, 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
and graduated with honors and a triple certification in special
education. 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 to me 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 do not even see colors, shapes or light.
Without the cues of lip reading, I can no longer understand
speech.

I got divorced about nine 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 almost 14.

When I returned to Ohio, I began coming to the Cleveland Clinic.
Dr. Natowicz has been working hard on my case. For years, he
tested me for what felt like a million different conditions. 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). After 25 years of
bewilderment and search, I finally got a diagnosis. I know what
is wrong with me. There are others out there with this thing. I'm
not alone.

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 felt like the world was over. It was very hard to deal
with, especially in high school.

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 deaf-blind 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 that way. That stuck
with me. It was all I could think about when I did become
completely deaf-blind. I swore to myself that I would get
something out of life. I just could not be like that poor woman I
met online.

Three

How has disability impacted your professional aspiration?


In college, I was completely career focused. I wanted to be a
special education teacher. My dream was to work with children
with severe developmental disabilities.

I excelled in college, but out in the real world, it was much
harder. I was hit with major discrimination at both jobs I tried.
The first time, I resigned. The second time I planned to fight
and was getting ready to contact a disability rights attorney.
That's when I became sick, and my disabilities worsened. I have
not work since then.

I still haven't given up. I've found a new love in writing. I'm
an active blogger. I've had a few poems published and
participated in two poetry readings at the KSU Wick Poetry
Center. I'm a contributing author of a book called "Deaf-Blind
Reality: Living the Life." I also won first prize in an
international braille writing contest.

Last year I said my goal was to enroll in a master's in Fine Arts
in Creative Writing program. That's exactly what I did. I am now
a grad student at Ashland University focusing on writing poetry.
I absolutely love it. Later I hope to combine my dream of being a
teacher and love of writing. I want to teach writing at the
college level.


Four

In what ways has your disability impacted your friendships and
social networks and your family relations?

My disabilities have always made it hard for me to have a decent
social life. When I began losing my hearing, I lost all my
friends. I guess I became too different. I made new friends with
the nerds and band geeks. Most of those relationships were not
strong. We never got together outside of school. I couldn't talk
to them on the phone. I knew nothing about current music. I
didn't get invited to parties. I had no boyfriends.

I think communication was the main problem. I couldn't hear and
didn't understand most of what was being said around me. Plus, I
couldn't see in the dark, so I didn't like to go out at night.

It's different now. First of all, technology has connected me to
a whole new world of people. I have so many friends online. Some
are deaf-blind, some are disabled in other ways and some have no
disabilities. Communication is no longer an issue. I don't need
to hear. I only have to read braille at my own pace and on my own
time. Disabilities don't matter with online friends.

I've also made so local friends, mostly where I missed them
earlier in life -- at college. Until recently, I was taking
classes at Kent State. I had no major. I did this for experience
and to keep my brain active and busy. I took ASL classes to
improve my communication skills. I made many friends in those
classes. Most of them are older and have children, like me. We
actually spend time together, go out, do new things.
Communication isn't a barrier because they know sign language. So
even though my disabilities are worse now, my social life is
better.

The impact on my family has been harder. Naturally, my parents
feel guilty. It has to be hard to watch your child struggle and
suffer so much. This isn't what they wanted for me.

I also face communication barriers within my family. Only Joseph
and my mother know how to fingerspell. I can't communicate with
Scott or extended relatives. I have to use email or text messages
to communicate with my father. I end up feeling like an outsider
and don't enjoy family gatherings.


Five

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

Because my condition is genetic, I feel that much 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 that
everyone carries in their DNA. My parents 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
decided to move 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 had
trouble with depression. Even though his hearing was normal and
he could walk just fine, he seemed to have a much harder time
accepting his limitations. He finally gave up. Tony committed
suicide seven 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 know what my disease is now.
That gave us an idea of whether Joseph was at risk. The chance of
him having PHARC is so low that Dr. Natowicz says Joseph doesn't
need to be tested. I was finally able to tell him that 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.


Six

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 that 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, give me
some extra time and I'll show you there's an awesome brain inside
this body.

I'm not going to tell you that I've overcome my disabilities and
live happily ever after. Real life doesn't work like that. It's a
constant struggle. I've learned to cope

One thing I really hate is when people who don't even 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.


Seven

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 graduate student at Ashland University. I have the
greatest boyfriend in the world. 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.