Network Activities and Updates
2004 Conference
· Conference
participants selected.
· Conference
information mailed and posted on Metadot within first few days 25 individuals
had signed onto the site.
· Speakers
and agenda being finalized.
Public Information
· Selection
process for 2004 conference completed
· Newsletter
created
· Website
updated and materials created
Membership
· Members
Support
· Voter
Registration Project initiated
o Registration
Drive
o Registration
Evaluation
· Project
support provided for all individuals whom applied to the 2004 conference.
· Post-conference
participants interaction developed.
· One
day of Conference planned
Mentorship
· Initiated
development and finalization of a list of mentors for network.
· Initiated
planning and connecting 2004 conference participants to home mentors.
· One
day of Conference planned
Funding
· Resource
Consultant funding request policy drafted
· General
funding request policy drafted
· Funding
solicitation letter developed
· One
day of Conference planned
Research
· Conference
logistics coordinated
· Research
participants recruited
If you are a youth with disabilities and
would like to find out how you can get involved in these activities, please
contact Peter Squire (pnsquire@hotmail.com)
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1. On
the Web
2. What
They Said…
3. Member Extraordinaire
4. Book of the Quarter
5. Movie of the Quarter
6. Opportunities / Updates
7. Contests
On the Web
You feel your pores open up, sweat dripping
down your chin...anxiety sets in and the last thing you think is,
I have never ever seen a wheelchair drop 13 feet into a swimming pool except
in a rare occasion of bad driving! Well, this web page brings to life
all those things in disabled athletes taking on extreme sports http://www.farfrumwalkn.org/.
The National Collaborative on Workforce
Development for Youth is a source for
information about employment and youth with disabilities.
http://www.ncwd-youth.info./
What They Said…
"Mr. Dart told me that one of his favorite articles about him was entitled
'What's So Great About Justin Dart?' It seemed a strange selection to me,
given all that he has accomplished and contributed. The article speculated
about how various achievements might be explained away. But that was only
to get to the final point: What's so great about Justin Dart? Answer: he
loves people. That has nothing to do with resources. That's just who Justin
Dart is -- to the core. His ability to love people, all people, is the
symbol, to borrow one of his phrases, of a true American patriot.”
-Jonathan Young, 2001
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Member Extraordinaire
Member of the Quarter:
Josie Badger
My name is Josie Badger; I’m 20 years old and am
a sophomore at Geneva College, in western Pennsylvania. I have a rare form
of muscular dystrophy, which is called myasthenia gravis syndrome. It causes
generalized weakness of my voluntary muscles. My service dog, a black lab
named Vito lives with me at college. I am vice president of the sophomore
class at Geneva and on hall council. I am also a 4-H leader, vice president
of Lawrence County Disability Council and a resource consultant for NYLN. This
summer I am interning for the Education Law Office in Pittsburgh.
One project I am
excited about being involved with is the Pennsylvania Transition Conference
at Penn State University. This conference will address services and supports
that assist students in transitioning from high school to jobs or higher
education. I will be presenting a workshop about college life and managing
health care needs while living away from home. I am also working with
Children’s Hospital of Pittsburgh to establish a transition support group
that will help youth in the Pittsburgh area plan and be successful after
high school.
Another project
I am working on is “Every Child Deserves a Home and Family”, sponsored
by Pennsylvania Protection and Advocacy Children’s Project. I was involved
in the planning phase of the conference and was a speaker at it. This conference
initiated a movement to get families the support they need to keep children
that have complex medical needs at home. There are almost 3000 children
in Pennsylvania with special health care needs that are institutionalized.
There are issues
in health care support, community resources, insurance, public policy,
and education that must be addressed. The work that must be done is overwhelming,
but this dedicated group is tackling them to allow children to grow up
at home with their families. Feel free to contact me at casb2000@yahoo.com.
Do you know someone who
has done some cool thing since attending the NYLN conference? We want to
hear from you! Please nominate someone that is a member of the NYLN and
briefly tell us why you think they should be featured in this section.
Book of the Quarter
No Pity: People with Disabilities Forging
a New Civil Rights Movement by Joseph P. Shapiro.
Movie of the Quarter
Matchstick Men--A professional con man struggling with an obsessive-compulsive
disorder meets the daughter he never knew he had, inadvertently jeopardizing
his very organized and artificially controlled life.
Opportunities
1. Regional Contacts
The NYLN is looking Regional Contacts
to serve as their regions NYLN liaison.
Responsibilities include:
1. Being point of contact for other consultants
in your region
2. Keeping us informed about what is going
on in your region
3. Assisting us with identifying resources.
The region structure is as follows: Midwest,
North Central, Northeast, Southeast, Southwest (which also includes US
Territories, Puerto Rico and Guam), and West (which also includes Alaska).
Contact Kristen Jones at lilkit@aol.com to
obtain further breakdown of regions.
2. Writers wanted!
If you are a 2004 Conference participant
or past Conference participant we would like to hear your story, and have
you talk to others about the conference.
If you are interested please contact Betsy
Valnes (bovalnes@pie.midco.net)
the 2004 Conference chair.
3. Come share your ideas
The Youth Advisory Committee(YAC) for the National
Council on Disability(NCD)
The NCD-YAC Committee provides advice to
the National Council on Disability on various issues such as NCD’s planning
and priorities. Currently the Committee is requesting youth with disabilities
join them in an open discussion of issues facing youth with disabilities
on July 23, 2004, 10:00 AM to 12:00 PM at the Ritz Carlton Pentagon City,
Arlington, Virginia. If you are interested in being involved in building
an inclusive future for youth with disabilities nationwide and beyond,
please contact YAC Executives, Isaac Huff, Chair at: I_Huff@superaleja.org or Rebecca Hare,
YAC Vice Chair at: rhare54@aol.com.
Space is limited to sign up quickly.
For more information about NCD - YAC please
visit http://www.ncd.gov/newsroom/advisory/youth/youth.htm.
4. Contests!!!!!
· Enter
to win a $25 Target gift card by helping NYLN design a new logo. All submissions
must be in by August 1st, 2004.
· Help
us name and develop a logo for this newsletter. Prize offered for the
best entry. Please submit your ideas by August 1st, 2004.
Please send all Member’s Circle submissions, requests
and comments to Kristen Jones at lilkit@aol.com or Elizabeth Guerrero at guerrere@ohsu.edu or by mail to: NYLN,
Center on Self-Determination, 3608 SE Powell Blvd., Portland,
OR 97202
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A Personal Youth Story
Written By Katrina Carter
Life is rarely fair.
Often, we are face with overwhelming obstacles that seem impossible to overcome,
but giving up at these times is the worst possible thing you can do for yourself. Before
my life-changing accident, I was in kindergarten and was thrilled to be riding
my bike without training wheels. I was like every other five-year-old. In
fact, I was a tomboy and loved to be outdoors riding my bike with my long
blonde hair flying in the wind. I felt so free. I really enjoyed riding bikes
with my neighborhood friend, Allison, playing with friends at recess, helping
my dad in the garden (I loved to play with worms), and pick raspberries with
my family during the summer.
One
day that same year, my life changed forever when I fell off my bike while
riding with my dad in a neighborhood near our home. I was riding without
a helmet when I lost my balance going up a gentle sidewalk curb. I flew
headfirst over my handlebars and landed on the side of my head. No cars
were involved. My dad rushed to me when he saw me fall but could find
no serious injuries; just a scratched knuckle on my hand and a very small
bump on my head. There was no bleeding or loss of consciousness. He rushed
to the nearest house and called my mom to come pick us up. When we reached
our home, mom called the doctor who said it was okay to let me go to bed
if I felt like it, but to wake me every hour. After a couple of hours,
I started vomiting and later that evening I slipped into a coma. Since
that day I have not felt the wind blowing my hair while riding my bike.
I didn’t know I would never have that kind of freedom again.
I
remained in a deep coma for five months. To sustain my life the doctors
put a tube in my trachea so I could breathe and a tube in my stomach so
I could get nourishment. I underwent several brain operations in hopes
of saving my life. They didn't expect me to live and certainly never to
come out of the coma. I was placed in a nursing home with the elderly; I
was only six years old. I required such intensive medical care I was
not allowed to go home for my care. However, sometime in August of that year I showed signs that my brain was beginning to
recover. My eyes could follow things, but other parts of my body would
not move. When I woke, it wasn’t like in the movies. I couldn’t talk or
move my body. It was like I was a statue! I was unable to understand a
single spoken word. I didn’t even know what the word mom meant. I was unable
to communicate with the most important people in my life.
Although
the doctors said I would never be able to walk, talk, or eat again, they
placed me in rehabilitation at Children's Hospital. During my twenty months
in rehab, I slowly relearned how to walk, talk, and eat. To date, I have
had a total of at least sixteen surgeries all related to the accident.
Today,
I am twenty-three years old. Each day presents new challenges and frustrations. I
don’t have a boyfriend; never have had a date or been invited to a school
dance. In fact I don’t have many friends. I no longer see my best friend,
Allison. I won’t
drive a car. I can’t do all the things twenty-three-year-olds do for fun. I
can't put on my socks and shoes; I can't wear regular jeans with zippers. It's
hard for me to wash my hair, even while sitting in my special shower. I
can't walk and carry things at the same time, because I need both hands
for my crutches. I can't bend because I have two steel rods in
my back, due to scoliosis from my brain injury. I don’t talk on the phone
very often because of my speech difficulties and because of the energy
required. When I fall, it is very difficult for me to get up. I don't
know if I will ever get married or be able to have children or even to
live on my own. Those who assist me invade my personal space constantly.
In spite of all
these obstacles, I never stop trying. I continue to have physical therapy
three days a week to help me regain and improve my abilities. Although
I will never gain back all of them, I will continue to work hard. I am
from Kenmore, WA, and a graduate from SAS, the Secondary Academy for Success,
in the Northshore School District. Currently, I am a student at Cascadia
Community College, where I plan to get the Associate in Integrated Studies. I
love school, and am an excellent student. I have also gone back to Washington,
D.C. four times attending or helping in the planning process of conferences
like the NYLN. I to keep busy and have myriad interests, including reading
mysteries, sewing, writing, gardening, taking walks, doing genealogy, and
doing puzzles. All of these activities are possible because of immense
amounts of courage, determination and perseverance; however, I would not
be where I am today without the love and support of my devoted family and
a good sense of humor.
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Disability Leader Profile
Yoshiko Dart
What is your name and please
give a description of yourself?
Yoshiko Dart. Black and
gray hair, Dark Brown eyes, 5’4” tall, 65 years old
What is your job, and what
do you do on a daily basis?
Full
time volunteer for civil rights and human rights and empowerment of people
with disabilities
How did you get involved
in the area of disability?
My late husband, Justin
Dart, Jr., was a wheelchair user
How would you characterize
your life, and what has made you successful, and helped you developed as
a leader.
I
took over my mother’s role (she died when I was young) and helped my
family and learned how to be responsible in a poor situation. I believed
in getting education and wanted to be an international minded person
while living in a mountain village of Japan back in early 1950s.
What is the greatest challenge
currently facing individuals with disabilities. How do you think youth
with disabilities can help face this challenge?
Ignorance
and fear of unknown among all the people about disability – natural characteristic
of being human – therefore prejudice and discrimination. To realize the
power and responsibility in themselves is essential. Revolution of individualized
empowerment is the answer to a solution.
When you were a young individual
what was one of your fondest memories, and why?
Communicate
with some Americans in English (I was in the mountain village of Japan
with no TV). I felt my life had opened up beyond Japan.
What do you think is the
most important advice you could give to a young person with a disability
who wants to be a leader?
Find
out your own truth, believe in your power and live your dream. Don’t
wait for any savior to come and give you happiness. You need to go out
and work hard. Take a complete responsibility for what you do, good or
bad.
If there was a youth sitting
in front of you and wanting to know what you thought the important thing
in life is, what would that be?
Same as the pervious one.
Because I believe everyone should be a leader. And become a truly loving
human being.
The goal = peace and happiness
The way = love and truth
When
you think of youth with disabilities what type of characteristics or personality
traits do you think it is important to have, what type did you have when
you were young and how did they change when you got older?
Positive, forward looking,
cheerful, passionate, truth and justice loving, positively frank, full
of fighting sprit, responsible and loving personality will be ideal not
only for youth with disabilities, but also for everybody in the world.
I was action oriented and
made some big mistakes. I got wiser through those tough experiences.
I learned a lot how to love being with Justin.
What
do you expect or desire from youth leaders with disabilities.
Do not blame parents, teachers,
unfriendly people, politicians, business people, religious people, foreigners,
temporary able-bodied people, society, different ideology, etc. for not
being successful, happy and so forth. Somehow figure out to get up and
change yourself first and therefore change the society of which you are
a part. Don’t wait for anyone to come down from sky to save you. When
you make friends alike and help each other, you will be truly empowered
and become leaders. Nobody can take away your real power.
Lastly,
what do you see as your role in helping these emerging leaders, how are
you helping build the leaders of the future.
By telling them the truth,
encouraging them to meet with good, successful politicians, and leaders
in different group by introducing them to such individuals whenever opportunities
come up, to take on responsible jobs, assignments and produce good results
so that they can develop well. I want to help them realize their power
(potential) and their responsibility to lead the revolution of individualized
empowerment.
Stop being spectators and
become decision makers and CEOs of their own lives. Don’t [be] afraid
of making mistakes.
