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Monday, December 21, 2009

Meaning of Disability

On December 15th, I participated in what was probably my biggest
gig in my accidental "carrier" as a disability awareness
speaker. My genetic doctor at the area's largest medical clinic
invited me to speak to his med students. The purpose of the
event was to teach the "meaning of disability." There were 32
med students in attendance plus many doctors and other staff. It
was an honor to speak to such a prestigious group of people.

I was one of only two people on the panel. The other woman is
both a mother of a child with disabilities and a professional in
the field of special education and advocacy. I was the only
person there who actually had any type of disability.

I wasn't sure if I'd be able to convey to the students what
it's really like to be disabled. Living with a disability is
such an individual thing. All I could really show them was what
it's like for me.

I had two tactile interpreters helping me with communication. My
doctor gave a brief introduction and then began asking the panel
questions. We took turns answering the questions. At the end of
the session, the students were able to ask there own questions.

For this blog, I will only be discussing what I told the
students. While the other woman did an excellent job, it would
be too hard for me to try to repeat her answers, too.

Below you will find each question and my response as best as I
can remember.

1. Tell us about yourself and your family

I come from a normal family. Middle income, middle class. Just
like any other family.

There was no hints of the trouble that lay ahead. There was
absolutely no history of disability in my family. Like many
genetic disorders, it just seemed to come out of no where.

I have two older brothers. Charles is five years older than me.
Allen is four years older. I'm the youngest and the only girl.
Yes, I was very spoiled.

It all began when Charles was 12 and I was seven. Charles
suffered an eye injury. I think he was hit in the eye by a
pencil. I don't totally remember. I was so young back then. I
just remember him with a patch over his eye. I was so proud of
my big brother the pirate.

He recovered from the injury. However, during eye examinations,
doctors discovered signs of Retinitis Pigmentosa. He was losing
his peripheral vision.

My eyes were checked too but doctors didn't see any signs of RP.
It wasn't until I was 13 when I began having trouble. My parents
were watching me and Allen for signs of vision loss. Instead it
came in the form of hearing impairment.

My parents noticed I wasn't responding when they spoke to me. I
was diagnosed with a mild hearing loss.

I'll discuss this more in detail in other questions.
Basically, I was 13 when I began losing my hearing. I got a
cochlear implant at age 16. I was still 16 when I learned I had
RP. My central vision was good but I had very little field of
vision and couldn't see in the dark. For years I was able to
function well by using the sounds I heard with my cochlear
implant and the visual cues of lip reading. I did not need to
learn sign language.

I graduated from college. I got married. My son was born. JD
was six months old when I became very sick.... I don't know if it
was an illness or flare up of the genetic disorder or what. I
just call it "my illness."

Within a few weeks, I lost all my hearing and vision. I lost
the feeling and use of my feet, legs and hands. I couldn't walk.
People had to communicate to me by printing letters on my face. I
was in constant pain, too.

I slowly got better but not completely. I'm still totally
blind. Without lip reading, I can no longer understand speech.
I now use tactile sign language for communication.

One thing I will tell you about myself and my family.... My son,
JD, is the most important thing in my life. He is eight years
old now. Having a disability doesn't change my life or roll as
his mother.

2. When you first encountered your disability, how did you think
that > it would impact on your life? What did you know/believe
about > disability before you first experienced any type of
disability? What > was the basis for your knowledge/beliefs?
What, if anything, do you > wish you knew then that you now k

My first experience with disabilities was my brother, Charles. I
was only seven when he was diagnosed with RP. I didn't really
understand. My parents said he was blind. He didn't look blind
to me. He could read print, watch TV and play soccer. I really
didn't think of him as being blind or disabled.

At school, I was exposed to many different types of
disabilities. All the children in the district and nearby cities
with special needs went to my school. There were special
classes for children with learning disabilities and deaf students
and what they called multiple handicapped. That meant children
with Down Syndrome, mental retardation, autism, etc. We also had
some students with physical disabilities who walked with crutches
or used wheelchairs. I was used to all of this and even
volunteered in the classrooms. It wasn't such a big deal.

At first, when I started losing my hearing, I was okay. I had
see kids with disabilities and I knew they could adapt. If they
could do it, so could I.

I remember telling my mom that wearing hearing aids was just
like wearing glasses. I would just pop them in and everything
would be fine. I really meant it. But what I didn't know was
that things wouldn't be quite that easy.

The hearing aids didn't work. My hearing kept getting worse. I
couldn't communicate with people. I had to have surgery to get a
cochlear implant. Then I started losing my vision. It was all
too much for me to deal with.

I remember one incident that really stuck in my mind. I was 13
years old and rapidly losing my hearing. The local doctor sent
me to a hearing clinic for a full day of testing. It was scary
and overwhelming.

At the end of the day, they hooked me up to some machine that
would show a picture of the inside of my ear. I was sitting in a
really big chair with a wire stuck in my ear. I wasn't supposed
to move.

I was still hooked up to that machine when the doctor told my
mother I would be deaf-blind. She completely broke down right in
front of me. Everybody moved to comfort her and left me alone in
that big chair with the wire in my ear. I saw my mother sobbing
and knew that I couldn't do this. It would be too hard. At
that moment, I felt like it was all over.

3. How has your disability impacted on your professional

From the time I was very young, I wanted to be a teacher. I
loved working with the children in the multiple handicapped
classroom. I decided that I wanted to teach kids like that. I
wanted to be a special education teacher.

Even as my hearing and vision worsened, my dreams never changed.
I was dedicated, determined and totally driven. I would be a
teacher no matter what.

I graduate from college summa cum laude with a triple degree in
special education. I found my first teaching job. It didn't go
so well. The class wasn't quite what I wanted. It wasn't a good
match for me.

My second job was at Sylvan Learning Center. I loved teaching
there. I was truly happy to get up and go to work each day.

Then illness struck and I was unable to work. I have not been
back to work since then. But I have not given up. I still
dream of being a teacher. I'm still dedicated, determined and
driven. One way or another, I will be a teacher again.

Right now I am taking ASL classes at my local university to
improve my communication skills. Later, I plan to enter a
masters program in some field of education. I don't yet know how
I will do it or what support will be needed. But I will teach
again. I know that in my heart. I won't let my disabilities
destroy my dream of being a teacher.

4. In what ways has your disability impacted on your friendships
and > social networks and your family relations?

It's been hard because my disabilities effected my ability to
communicate with others. People need to be able to speak my
language in order to socialize with me. Most people can't or
won't do that.

As a teenager, I lost all my friends. I don't know if they
couldn't handle it or what. I started hanging out with the
"nerds" and "band geeks." Even that was limited. I didn't hang
out with friends after school. I didn't go to parties. I didn't
date or have boyfriends. I was always very isolated and lonely.

Now I'm totally deaf-blind and use tactile sign language. I've
made some friends through my ASL classes. It makes a big
difference that they know how to communicate with me.

My mother learned to fingerspell and so can my son. They are
the only ones in my family who can talk to me. It's very hard
sometimes. For example, my father brought me here today but he
can't talk to me. He doesn't know any type of sign language. We
came here together but we can't communicate. It's sad.

5. In what ways has your disability impacted on your immediate
family > members? Have there been any explicitly medical impacts
on any of your > family members?

To answer this question, I will tell you two stories.

First, there is my son, JD. When I became pregnant, we believed
that RP was the only genetic disease in my family. I didn't go
through genetic counseling. But I was told there was almost no
risk of the baby inheriting RP.

Now we know better. We don't yet know what I have. My doctors
here believe it's some kind of mitochondrial disorder. We
haven't been able to narrow it down to a specific disease or
syndrome yet.

Mitochondrial disorders are passed down by the mother. JD could
have this. He's eight now and doesn't show any signs of
disabilities. But he could have this. That's my biggest fear in

It's not that I wouldn't love my son if he was disabled. I will
always love him. But I've been through this. I know what it's
like. I know how hard it is. I don't want that for my child.

The second story is about my brother, Charles. My doctors now
believe that Charles has the same condition as me. It just
effects his body in a different way. He is partially blind. He
has no peripheral vision but he can still read print with his
control vision. His hearing is normal and he only has the
mildest neuropathy in his fingers and toes.

You would think that because he's so much less disabled, life
would be easier for Charles than me. But that's not true.
Charles always had such a hard time dealing with his visual
loss. I don't know if he was scared that what happened to me
would happen to me. Or if it was harder for him to cope because
he's male. I've heard that men have a harder time dealing with
these kind of things. I really don't know.

Two years ago, Charles couldn't take it anymore. He committed
suicide. So not only did my family have to deal with all these
disabilities, we've also been torn apart by the horrors of
suicide. I do not know if we will ever truly get over that.

6. The media sometimes portray individuals or parents of persons
with > disabilities as heroic. What are your thoughts on this?

I think it's a necessary evil. It's about awareness. Awareness
is the first step in education. We've got to start somewhere.

Sometimes the media does okay with this. Sometimes they don't.
You get both good and bad.

As for me, I don't like being portrayed as a hero. I don't want
people to tell me that I'm heroic. I think it's embarrassing.
I'm just doing what I have to do to live my life. I don't have a
choice. I don't see it as anything special. It's just my life.

7. Has having a disability or caring for another person with a >
disability changed who you are? Has it changed who other people
think > you are?

I really don't know. I was only 13 when I began losing my
hearing. That's a pretty young age. I've had disabilities most
of my life so it's hard to say if it's changed me.

I like to think that it hasn't. I think this is who I'd be no
matter what happened. Maybe my disabilities have made me a
stronger person. I've had to deal with so much. I've realized
that I can overcome anything.

I do fear that people see me differently, though. Mostly it's
because of my communication difficulties. I'm still learning
ASL. It's all new to me. I think sometimes people get the
impression that I'm not intelligent because of this. That first
impression is totally wrong but people need to get to know me to
understand that.

8. Based on your encounters with the medical system, what would
you > want medical students to learn in their medical school
curricula that > may not be adequately taught at present?

I don't know what they are teaching you!

I think the most important thing is that you have to realize your
patients are people. You have to see the person first.

Okay, I'm sure you've learned this in your classes I sure did
when I was studying special education. You use person first
language. It's not "autistic boy" or "deaf woman." You need to
say "Boy with autism" or "woman who is deaf."

You know this but do you really KNOW it? Do you UNDERSTAND it?

You walk into that room... you spend 20 or 30 minutes with your
patient. How do you really connect with the person who is
sitting in front of you?

Here's an example. I'm deaf. I'm blind. I use sign language.
I wear braces. I walk with crutches. That's not who I am
though. None of that describes me as a person.

Let's try again. I'm a mother. I'm a student. I was in a bad
marriage. I went to court and won custody of my son. I collect
angels and raccoons. I drink Dr. Pepper every day. I like to
read vampire books.

That's who I am. That's me as a person. You have to find the
person in your patients.

9. Based on your encounters with the medical system, what >
recommendations would you make regarding health policy research
and/or > research regarding clinical care that should be done?

Some people in the deaf community are against medical research.
They don't think that deafness is something that needs to be
fixed or cured. I respect that opinion but I don't agree.

I'm all for research. My hopes for ever being able to see again
lie in research. Whether it's identifying genes, stem cell
transplants, implants, drugs or whatever.... I think medical
research is great. Keep it up!

Healthcare is a different story. I'm on Medicare. I have to
fight for every single little thing I need. Doctor
appointments, medicine, treatment, or equipment. It's always a
battle. It gets so tiring.

Something has to be done to improve healthcare. People with
disabilities should not have to fight to meet their medical
needs. That's just not right.

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