Network Activities and Updates
2004 Conference
The National Youth Leadership Network (NYLN) recently concluded its 2004 Conference "Learning, Living, Leading: Youth with Disabilities Continuing the Legacy" held in Washington, DC, July 24-27. Sixty-six young adult leaders from 38 states, Washington, DC, Guam, Puerto Rico and Siapan, all between the ages of 16 and 28, came together to share their insights and experiences about issues such as employment and college options, Social Security benefits, assistive technology, and disability history .
The 15 members of the NYLN Governing board worked tirelessly to bring the conference together and ensure its success. However, it would not have possible without our wonderful speakers, federal agencies members, private contributors, and most importantly those youth who took a risk and applied to attend the conference.
Public Information
The Public Information Committee has been involved in the design and creation of this first ever newsletter from the Network and it continues to develop and improve the website and create and distribute materials for the public. Additionally the Committee was very active in leading the selection of the 2004 conference participants.
Membership
The Membership Committee supports the efforts of our members and other youth interested in getting involved in community projects. Most recently the Committee lead a voter registration project. Network members were asked to go out into their communities and register ten individuals to vote. The Committee will be working on improving connections and interaction among members over the next couple of months, and it has developed a plan for youth to work together on their goals following the conference, which it will lead. Finally, the Membership Committee led the Education and Employment day at the 2004 conference.
Research
The Research Committee is very involved in overseeing the first research study ever conducted to investigate and compare the experiences that contribute to leadership development by young people with and without disabilities. Surveys are being completed by youth with disabilities in leadership roles, youth with disabilities who are not in leadership roles and youth leaders without disabilities. The Committee hopes to have the data collected and analyzed over the next few of months. The Committee was also in charge of all the conference logistics, from participant travel to food.
Mentorship
The Mentorship Committee has been actively involved in identifying national mentors for Network members. They also spent a considerable amount of time organizing one of the most notable days of the conference, Disability Awareness. Finally, the Committee has started a plan to connect 2004 conference participants to mentors in their home communities.
Funding
The Funding Committee planned the Healthcare day at the 2004 conference in addition to developing several policies for the oversight and distribution of Network funds. These policies describe how funds can be requested by members to support their Network presentations and consulting (Resource Consultants). They also describe how Governing Board and Committee members can request general funds to support their activities, and can receive small stipends in honor of their contributions to the Network. The Committee is currently working on developing a letter to send to corporations and private foundations requesting contributions to continue the Network's activities.
If you are a youth with a disability and would like to find out how you can get involved in these activities, please contact Kristen Jones at lilkit@aol.com.
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Please send all Member’s Circle submissions, requests and comments to Kristen Jones at lilkit@aol.com or Elizabeth Guerrero at guerrere@pdx.edu or by mail to: Elizabeth Guerrero, Portland State University - RRI, PO Box 751, Portland, OR 97207
1.
On the Web
2.
What They Said…
3. Member Extraordinaire
4. Book of the Quarter
5. Movie of the Quarter
6. Opportunities
7. Information
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 something cool 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
We are looking for youth to serve as his/her region’s 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.
Contests!!!!!
· Help us name and develop a logo for this newsletter. Prize offered for the best entry. Please submit your ideas by January 31st, 2005.
· Enter to win a $25 Target gift card by helping NYLN design a new logo. All submissions must be in by January 31st, 2005.
Information
1. Bender Consulting Services, Inc.: www.benderconsult.com
Bender Consulting Services, Inc. is a for-profit company that focuses on providing competitive employment for Americans with disabilities. “Americans with disabilities will never, ever be free until they have competitive employment.”
Make sure you listen to Disability Matters with Joyce Bender on www.voiceamerica.com every Tuesday from 2:00 to 3:00 EST to hear about our history and our leaders--if you don't know--you won't grow!
2. Kids As Self Advocates (KASA): http://www.fvkasa.org/index.asp
We serve as youth advisors to many Family Voices activities at the state and national levels. We represent the voice of youth living with disabilities and chronic health conditions by speaking at public events, hearings, to governors and with other policy makers. We also educate medical students and physicians, and fellow students at our schools.
Kids As Self Advocates (KASA) is an organization created by youth with disabilities for youth to educate society about issues concerning youth with a wide spectrum of disabilities and special healthcare needs. KASA believes in supporting self-determination, creating support networks and proactive advocacy for all youth with disabilities in our society.
We model leadership and the power of self-advocacy. We are active in our schools, communities, families and, in some cases, places of employment. We are proud to have overcome obstacles. We share our message with other youth who have disabilities or chronic health conditions, and with our typical friends and peers.
National Advisory Board of KASA--The Board of KASA advises policy for the KASA organization as a whole, including activities like the website, newsletter, and possible meetings. This Board serves several purposes: it leads the programming for KASA; it provides an opportunity for youth to sharpen their leadership skills; and it is a valuable resource to the media, professionals and other young adults regarding issues concerning young adults with special health care needs.
We are currently seeking new board members to represent the youth voice between 14 - 24. If you are interested please contact, julie@fvkasa.org or ortizn@fvkasa.org
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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 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 picking 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 that I was not allowed to go home. 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 do keep busy and have myriad interests, including reading mysteries, sewing, writing, gardening, taking walks, and doing genealogy and 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
Since marring Justin Dart, Jr., in 1968 she has been his full partner in promoting the rights and empowerment of people with and without disabilities in the area of disability policy and years of citizen advocacy for civil rights, independent living, ADA, universal health care, and the election of pro-disability rights candidates.
What is your name and please give a description of yourself?
Yoshiko Dart, black and gray hair, dark brown eyes, 5’4” tall, and 65 years old
What is your job, and what do you do on a daily basis?
Full time volunteer for civil and human rights and the 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 of alcoholic father and two younger sisters 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 the early 1950s.
When you were a young individual what was one of your fondest memories, and why?
Communicating with some Americans in English (I lived in the mountain village of Japan with no TV). I felt my life had opened up beyond Japan.
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 the unknown among all people about disability – a natural characteristic of being human – therefore prejudice and discrimination. To realize the power and responsibility in you is essential. A revolution of individualized empowerment is the answer .
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 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 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?
My answer will be the same as the previous one. Because I believe everyone should be a leader and become a truly loving human being.
The goal in life: struggle to improve your own life and others’ everyday in most truthful, peaceful and loving manner – that I think is a profound happiness .
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 spirit, responsible and loving personality will be ideal not only for youth with disabilities, but also for everyone in the world.
I was very much action oriented and made some big mistakes. I got wiser through those tough experiences. I learned a lot from Justin’s lifelong struggle to live his own truth and love humanity in everyone including his enemies .
What do you expect or desire from youth
leaders with disabilities.
When you are not successful nor happy, do not just blame parents, teachers, counselors, medical professionals, unfriendly classmates, neighbors, politicians, business people, religious people, media people, foreigners, temporarily able-bodied people, different ideology, society, etc. and on and on. Don’t wait for them to change. First of all you need to figure out how to get up and change yourself and continue to change yourself, therefore change the society of which you are a part. Don’t expect or wait for anyone to come down from the sky to save you. When you make friends alike and help each other, you will be truly empowered and become a leader. Make your powerful circle bigger and bigger. 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 you the truth; by encouraging you to meet with great politicians and leaders of different organizations; by actually introducing you to such individuals whenever opportunities come up; by encouraging you to fully get into politics; by urging you to take on responsible jobs and assignments and produce good results, I believe you will develop yourself well. I would like to assist you in anyway possible so that you will recognize and feel your own power (potential) and responsibility and start leading the revolution of individualized empowerment .
Stop being spectators and become decision makers and CEOs of your own lives. Don’t be afraid of making mistakes and lead on no matter what.
I POWER!
