Fall 2006

Movie of the Fall

The White Countess
In this romantic drama, two lonely people find hope during difficult times in Shanghai during the 1930’s. A former United States diplomat who is blind loses his wife and daughter in a traumatic event. His life again changes forever when his path crosses with a Russian countess (a widowed member of royalty) who is struggling to support her family.

Meet Rose and Ruby: sisters, best friends, and conjoined twins. Since their birth, Rose and Ruby Darlen have been known simply as "the girls." They make friends, fall in love, have jobs, love their parents, and follow their dreams. Now nearing their 30th birthday, they are history's oldest craniopagus twins (joined at the head). When Rose, the bookish sister, sets out to write her autobiography, it inevitably becomes the story of her short but extraordinary life with Ruby, the beautiful one. As Rose and Ruby's story builds to an unforgettable conclusion, Lansens captures human experiences of loss and struggles for independence. Read this book to share in the fundamental joy of living life to its fullest!

Website Highlights

“Expecting the world to treat you fairly because you are good is like expecting the bull not to charge because you are a vegetarian.”

Opportunities for Input

Hello everyone! My name is Beth Kolbe and I am a junior at Harvard majoring in Biology and Health Care Policy. I use a manual wheelchair from a C6-7 spinal cord injury I received when I was 14. My first experience with NYLN began with the Conference in 2004. Before that, I was involved with the local YLF in Ohio.

I was fortunate to spend this past summer in Washington, D.C. as part of the American Association of People with Disabilities (AAPD) Congressional Internship Program. I was accepted as an intern in Senator Kerry’s office.

The experience was truly amazing: wheeling to work on the Hill every day, researching topics and legislation for the staffers, meeting incredible leaders in the disability community, and exploring the fabulous city of D.C.! One of the highlights of the summer was being on the Senate floor. This turn of events began when Senator Frist put three stem cell bills on the Senate calendar.

With the encouragement of my Office Administrator, I asked Senator Kerry if I could be on the floor with him when the bills were debated. He agreed and the next day I was awarded full floor privileges! I listened from the floor as many Senators spoke their views. I was especially honored when Senator Kerry included my story in his speech. He spoke about my spinal cord injury and how stem cells would help me, as well as countless others. When the stem cell votes began, Senators began pouring onto the floor. I could hardly believe that I was so close to the people who shape our country. The bill to allow federal funding for stem cell research passed Congress, but unfortunately President Bush used his first presidential veto to stop the bill and to stop the hope of the many Americans who could be treated with advances from the research. Still, it certainly was experience I will always remember! I learned so much on and off the Hill.

After the exciting summer in D.C., I flew home to Ohio for two days before heading out to San Antonio, Texas where I competed in the Paralympic Swimming Championships. I have been a member of the National Paralympic Team for the past few years. It has allowed me to compete in countries all over the world, from the World Cup in Manchester, England to the Belgium Open in Antwerp, Belgium. I am continuing to train for the 2007 Pan-American Games in Brazil and the 2008 Paralympics in China. My training is split between the Seneca Aquatic Club when I am home in Ohio and the Harvard Women’s Swimming and Diving Team when I am at school. Swimming on the varsity team at school has been an incredible experience and a great push to swim and train my best.

Outside of the pool and classes (and studying!), I volunteer through Harvard with elementary students with disabilities. I look forward to beginning work as a part-time intern in Senator Kerry’s Boston Office working specifically on disability issues. When I graduate, I plan to attend law school. I might return to Capitol Hill or work as a civil rights or health care lawyer. For now, it’s off to Cambridge to start my junior year!

Sixteen years after the Americans with Disabilities Act was passed, people with disabilities have a greater opportunity than ever before to represent us in higher government. Both the Democratic and Republican parties have candidates for disabilities running for offices, like Lutinent Governor, State Senates, State Assemblies, Congress, and local elected offices. In the past, politicians, like Presidents Woodrow Wilson and Franklin D. Roosevelt have hidden their disabilities from the public. This year several candidates have openly discussed their disability in relation to their possible election to office.

It’s important to become familiar with the background and positions of all candidates running for office. It’s a positive sign that there are so many candidates with disabilities this year that my space is limited to feature only two people. It is my hope that you will be motivated to use your time to find out more about candidates with disabilities in your area.

Kristen Cox is a 36 year old Republican running for Lt. Governor in the state of Maryland. Cox is legally blind. She was born in Bellevue, Washington. She has a degree from Brigham Young University in educational psychology with a certificate in special education. She is married and has two boys. She is currently the Secretary of Maryland Department of Disabilities. She was also Director of the Office of People with Disabilities from 2003-2004. She has served on many boards, like Governor Executive Council, Children’s Cabinet, and Interagency Committee on Aging Services. She also worked with the U.S. Department of Education for several years. Ms. Cox was the Assistant Director of Governmental Affairs within the National Federation of the Blind, from 1981-2001. In an article in Forbes, Cox remarks that she is honored to be seen as a role model. She states, “I am who I am today because of people who were role models for me, who mentored me and believed in me. I think, quiet frankly, I have a responsibility from that perspective to help others.” If elected, Ms. Cox will be the first woman with a disability to be a Lt. Governor in our country’s history.

David Paterson is also no stranger to government or politics. He, too, has made history in being the first in nearly everything that he does. Mr. Paterson is the first African-American who is legally blind to run for Lieutenant Governor in the United State’s history. He is married has a daughter and a son. He is currently the Minority Leader in the New York State Senate. He is the first African-American and the first visually-impaired person in New York State history and in the nation to hold this position. He has been a State Senator since 1985. Hon. Paterson has lived in and represented the people in Harlem, NY for over 21 years. It has not been an easy life. Hon. Paterson could not go to public schools because of his disability. His parents decided to move to Long Island for him to attend school there. He later furthered his education at Columbia University and Hofstra Law School. After law school, he went to work for the Queens District Attorney’s Office. He then ran for and won the position of New York State Senator. Now, Hon. Paterson is a big star in the Democratic Party on the National scene. In December, he was appointed to the Democratic National Committee as an at-large member. He is also on the Democratic Legislature Campaign Committee. He has led the way to bring stem cell research into the spotlight and is actively involved in many disability-related issues.

With so many candidates with and without disabilities to consider, it can be overwhelming. It is important for young leaders to stay informed about political happenings because the issues these politicians debate ultimately affect our lives. Make the most of your time by identifying which issues are most important to you. It might help to keep notes on what you’ve learned about different candidates, politicians, and issues. Stay informed and be an active advocate on more than just voting day!

Every day that a youth with a disability spends living in an institution is a day lost. Nursing home transition makes economic and social sense. As youth with disabilities, it is vital that we join the Independent Living community in ending the institutional bias.

People are much happier living in the communities. I recently became friends with a young man that lives in a nursing home. Our disabilities and accommodations are identical. However, our lives are completely different. His average day consists of sitting alone in his room or watching television with senior citizens. On nice days, he is allowed to go outside but must be with an attendant and is advised not go off property lines. If a few residents have a cold, he is not allowed to leave his room at all… A few months ago, he was stuck in his room for 10 days because the attendants were afraid the virus would spread.

He should not be living there; he is only a few years older than most NYLN members. For every dollar spent on a person living in a nursing home, it only costs 35 cents for that person to live in the community. Let’s say a person only needs 3-hour care, does it make sense to pay for 24 hour nursing care?

Disability advocates have been working very hard to get people out of nursing homes but there is much more work left to do. Many youth do not see nursing home transition as an issue that concerns them because they do not know how easy it is to get stuck in a nursing home or how many youth are actually already in them! These people are not strangers, they are our peers!

I urge everyone to educate themselves on the issues, such as the MICASSA (Medicaid Community Attendant Services and Support Act) legislation and contact their local Center for Independent Living (CIL) to find out ways to get involved. To find your local CIL, visit www.ilru.org and click on the Directory. It’s time for youth to join the forces against institutionalization.

Brom Wikstrom is an award-winning artist. He began painting as a young child in Seattle Washington. In 1975, he injured his spinal cord in a diving accident. Not long after, Brom learned to paint with a brush in his mouth while in rehabilitation. Before his accident, Brom mainly used black and white pens and pencils; his disability brought color into his creations. Brom’s colorful artwork is an example of the power of art during life’s many changes. After experiencing a spinal cord injury, a disease, or being born with a disability limiting the use of hands, hundreds of artists across the world make up an organization called Mouth and Foot Painting Artists (MFPA). Brom Wikstrom is one of 66 American Mouth and Foot Painting Artists. His work has been shown around the world.

Even though Brom now paints in a completely different way than he used to, his motivation to paint hasn’t changed a great deal. He was trained as a commercial artist to meet the needs of customers with his work. In many ways, he does the same job by making artwork that can be used for a certain purpose. He’s proud to be one of several artists featured on this year’s holiday cards made by the Mouth and Foot Painting Artists organization.

While the reason he paints may not have changed much, his role as an artist is very different than it was before his accident. Brom says his role is, “to help change the longstanding stereotype that someone with a disability always needs help and ends up dragging down society.” He shows people that he is a professional and an important member of society. He does this by volunteering, public speaking, and traveling the world. Art has become a successful career for Brom Wikstrom. It’s also his bridge to mentor others with disabilities.

Brom’s work and leadership provides support for the social model of disability. This model doesn’t see disability as a problem, like a disease, but instead as a culture. The work created by the Mouth and Foot Painting Artists celebrates the culture of people with disabilities by sharing it with the world. The organization is very empowering; all of the profits going to the artists. People with and without disabilities benefit from the work of this organization. While Brom and other artists with disabilities are painting the future of our culture, his work doesn’t always involve the subject of disability. Brom hopes his, "work will make people feel good about themselves.” He knows the healing power of creating and viewing artwork. For Brom, art has been his redemption. It has offered him the chance to realize his dreams. Brom states, “It doesn’t matter how you do the art, it comes from your head and your heart.”

Advocating and Adapting Abroad

By Jen Marshall

I have studied abroad in Canada, England, and Mexico. These experiences have helped me embrace my disability. Whenever I lack confidence or have a bad day, it is helpful to think back to my accomplishments, the places I’ve visited, and all that I’ve learned from others. This reality check is really helpful!

I come from a small town and I’ve always had a desire to travel to other parts of the world. After rehabilitation from a traumatic brain injury, I wanted to study abroad to get a fresh start. I would have the chance to do things on my own and show my leadership, maturity, and capabilities. By going abroad, I learned to advocate for myself:

Making Connections
I studied in Canada through Michigan State University’s (MSU) Freshman Study Abroad Seminar. I had the chance to meet other freshmen and professors before moving onto campus. Since I am registered with MSU Resource Center for Persons with Disabilities, I must meet one-on-one with my teachers. The program gave me the chance to test out MSU academic accommodations and learn more about effective methods of communication with professors.

Once I arrived in Quebec, Canada, I learned that another student in my group had dyslexia. Wow! It was such a relief that another student would relate to the experience of asking for accommodations. Many of my professors wondered about my specific disabilities because a student doesn’t necessarily have to disclose that information by law. I personally feel that it’s easier to be upfront and share about my disability so that we can work together. The other student with a disability and I both used extended time to complete projects. It was comforting to know that others work best on different timelines than most.

Changing Perspectives
My second experience studying abroad was in London, England. It was both exciting and scary. I would be leaving all of my familiar support systems and would need to be much more independent. I began the trip with a lot of self-doubt. Now, reflecting on the experience boosts my self-esteem. I can say, “Hey, I did those things!”

At first, I was homesick often. On my first night in London, I made a countdown chart of how many days until I returned to the USA! The time difference made phone calls difficult during the week. My classmates and I made trips to the internet café to send frequent e-mails to friends and family members. My brothers made the time easier by sharing their funny stories from back home. I realized I wasn’t missing all that much! When it was time to leave, I wasn’t ready to go home!

Opportunities to Educate
I lived in London with 32 other students studying abroad. In many ways, my disability is invisible except for the paralysis on my left side. As I get more tired, I stagger and trip more while walking. I could tell many of the students had questions about my trouble walking. As an icebreaker to bring up the topic of disability, we sometimes discussed movies with actors portraying disabilities. We talked about the truths and misrepresentations within these movies and how it relates to the views of society.

My professors and I worked together well, but few had any experience working with students with disabilities. At times, they were afraid to ask questions because they didn’t want to insult me or say the wrong thing. I spent a lot of time educating them.

Advice on Accommodations
One of my accommodations is 100% extended testing time due to my slower cognitive processing times. All of our exams were written essays. In the United States, I use a digital tape recorder and a computer to study lectures. This wasn’t an option abroad. The extra effort meant that I often had to choose between going out with friends or staying home to study. Both were important to making the most of the experience. At the time, I didn’t know it was possible to choose a reduced class load. I now use that as a way to balance my time.

I was most worried about fatigue before going abroad because sometimes I need to spend all day in bed resting. I thought it would be a social barrier, but I made many relationships during the program. I even went on independent trips to Germany and Italy. The best part of the London exchange was the chance to go to museums and art galleries at no cost. Interactive classrooms are my preferred method of learning because it cuts down on the time I need to read and write. I do better and stay more interested by studying this way. A few other things that I found helpful and suggest to others:

Take a planner.
Be confident in yourself.
Do what you need to do in order to learn.
Ask for help when needed.
Rest when you need to.
Make sure to have fun!

For free information on international exchange opportunities or disability accommodation tips, visit the National Clearinghouse on Disability and Exchange website at www.miusa.org/ncde.

If you want to go abroad on a cultural exchange, stay with host families, learn a language or study abroad in another country, the National Clearinghouse on Disability and Exchange, which is sponsored by of the United States Department of State and administered by Mobility International USA, provides free information on international options available, lists of scholarships and funding, and how to best prepare to go abroad including the book “Survival Strategies for Going Abroad: A Guide for People with Disabilities” available at www.miusa.org/publications or by contacting 541-343-1284 (tel/tty) or clearinghouse@miusa.org.

© National Youth Leadership Network. Preparation of the newsletter was supported, in part by grant # H324F0100001 from the Office of Special Education Programs, US Department of Education. The opinions expressed herein are exclusively those of the authors and no official endorsement by the sponsors should be inferred.

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