Fall 2005

Movie of the Month

Murderball
Men, who are quadriplegics, compete for the Paralympic gold medal in this documentary about an amazing sport and the athletes who play rugby using special wheelchairs. The film follows the U.S. Quad Rugby Team as they compete. Winner of the 2005 Audience Award at the Sundance Film Festival.

Running with Scissors is the true story of a boy whose mother gave him away to be raised by her doctor. At twelve, Burroughs was sent to live with the doctor's odd family. This is a story of a childhood with no rules and a house where the Christmas tree stayed up all year. Valium was eaten like candy, and if things got boring, electric shocks was the entertainment. The funny and disturbing story of a boy's survival was a New York Times best seller 40 weeks.

Website Highlights

“Treat people as though they are what they ought to be and you help them become what they are capable of being .”

We want to hear from you!

I am 21 years old and live in Rockville, Virginia. I work part time for the YMCA and volunteer with For the Love of Animals. I graduated from the American School in May 2005 from a correspondence high school.

In 2002, I participated in the Virginia Youth Leadership Forum (YLF). Since then, I have been volunteering in the community and advocating for youth with developmental disabilities on many different levels.

I recently presented at the Virginia Transition Forum 2005 on “Creating Positive Volunteer Opportunities for Adults with Autism”. I have also presented for the Autism Society of America and a local high school class.

In 2005 I was chosen to go to the National Advanced Youth Leadership Institute. While there, I went to the 15 th Anniversary of ADA celebrations and heard President Bush speak. It was the chance of a lifetime.

When I got home from the Institute, I got busy. I helped make my photos from the 2005 NYLN Institute into a slide show and got them into a scrapbook. I have stayed in touch with many of the other leaders I met through e-mail. Now, I am a member of the Mentorship Committee.

I have again presented at a large conference. This time with the title “Determined to Earn a Standard High School Diploma.”

In September 2005, I started a group called A Voice for GAP Kids. The purpose of the group is to share information, educate members of the Virginia General Assembly, and advocate for public policy. GAP kids are “Gray Area Kids” in grades 9-11. These students have Individual Education Plans.

With the help of other network members, Stacy Milbern and Alicia Payne, a web site was made. This site will have information about the government and will monitor any education bill that affects students (with or without disabilities). The web-site is http://www.gapkids.cjb.net

I am lucky that many people in the state have been very supportive. I recently spoke to the State Special Education Advisory Committee (SSEAC) about my new support group, “A Voice for GAP Kids”.

Right now, I am planning for an event in Richmond for National Youth Service Day. The event: Are You Ready? Disaster Preparedness for People with Disabilities will be held on April 22, 2006. I invited everyone to join me, as I follow the Disaster Supplies Calendar.

Ever wanted to make a difference in the Traumatic Brain Injury Community? Have you registered to vote? Do you want the issues of the TBI Community to be heard in Congress? Lastly, have you heard of MTV's Rock the Vote?

Now think about something that is dedicated to Americans who have sustained a TBI and now live with a disability. How wonderful would that be? Well there is already something like this. It's called TBI Raiders Survived to Vote. This project was started by me, my advisor, and Janey, another member of our TBI volunteer group. TBI Raiders Survived to Vote, www.angelfire.com/ok5/tbiraidersok/s2v.html , is here to get our issues out to the candidates running in the next election.

One of our group's goals is to make sure the correct information is spread in books, policies, and public information. In the Policies and Procedures for Special Education in Oklahoma book, Traumatic Brain Injury is defined as meaning “an acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment, or both, that adversely affects a child's educational performance. The term applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition; language; memory; attention; reasoning; abstract thinking; judgment; problem-solving; sensory, perceptual, and motor functions; information processing; and speech. The term does not apply to brain injuries that are congenital or degenerative, or to brain injuries induced by birth trauma.” 34 Code of Federal Regulations 300.7(c) (12)

This definition doesn't cover all twelve types of TBI. Shouldn't the fact that TBI affects 1.5 million Americans every year and will affect more than breast cancer, HIV/AIDS, spinal cord injuries, and multiple sclerosis does COMBINED every year be enough for concern?! With all these budget cuts going on, I worry what is truly being done to help survivors. Personally, I have actual physical reactions by the concern I feel on these issues.

While I was in college, I did a report on TBI every semester. I found a way to make it fit the assignment we were supposed to be doing. I was a student leader throughout college. Now I am a member of the National Youth Leadership Network and am on the NYLN Research and Public Information Committees. I am also on the Oklahoma United We Ride Advisory Board. I manage “A TBI's Corner: and TBI Raiders Volunteer Service. I am very fortunate for all that I have done because I sustained a really severe left/right TBI.

One thing I have discovered is when many people work together, they can accomplish their goal. Keeping this in mind is how I stay “driven.” For future elections, I hope you'll check out the Survived to Vote website. Help me spread the message!

My lung capacity is at 18-20% on a good day, and “you just don't want to know” on the bad days. Living with a chronic cough, mobility challenges and severe breathing difficulties is nothing new. I have lived on diminished capacity since I was eight. At that age, I became a cancer survivor. If I sound like a college professor, it's because I am a college professor. I teach mathematical sciences. My doctorate is in Microelectronics-Microphotonics. For those who are still reading, it's 9:00 p.m. and I'm in my office at the University of Arkansas at Pine Bluff. My classes have officially ended at 2:00p.m. “Why is he still here?” Some may ask. It's because I have a mission, a purpose. And the purpose now is to write this article in which you are now reading.

For every reason why a fully-abled person has for not achieving the things they want, a person with a disability has at least one more. This is a gift and a curse. It's is a gift in that society is more compassionate to the failings of a disabled person. Most people intuitively understand that people with disabilities have an innately missing attribute that may cause a clear disadvantage. It's a curse in that the disabled person s tarts with less and thus is expected to end with less. It is a curse, because more often than not, the disabled person is assumed less competent unless proven otherwise. Gift or curse, some still achieve.

Beethoven, Thomas Edison, Einstein… Geniuses with learning disabilities. Franklin Roosevelt, Justin Dart, Bob Dole… Leaders with physical disabilities. Stephen Hawking is a physicist/mathematician who has Lou Gehrig's disease and is in a wheelchair. He needs a computer to speak. What I'm saying is that there is truly something to making the best of what you got. Those people weren't born under a celestial sign that ordains them with their achievements; they've made a choice to take what they are given, repackage it to give them confidence, and do the best with what they have. They achieve more because they demand better: better of the world, but mostly better of them.

It is getting really late. Before I go, I want to leave you with the advice that is posted on my door.

Bob Kafka has been part of the disability rights movement for many years . ADAPT (co-founded by Kafka) works to promote services in the community instead of forcing people with disabilities to live in institutions and nursing homes. This group uses direct action and protests to advocate. To read about recent protests in Tennessee, go to www.adapt.org .

Picture above left: Bob Kafka approached by police officer
Pictured above center: Bob Kafka portrait
Pictured above right: Police officer handcuffing Bob Kafka

What is your job? I am a National Organizer for ADAPT, a grassroots disability rights organization to change the Medicaid long term care delivery system. I am also the Co-Director of the Institute for Disability Access, a disability rights and services training/education organization.

How did you get involved in the area of disability? I broke my neck in a car accident at age 27. I now use a wheelchair. I volunteered to work with the local Coalition for Barrier Free Living in Houston, Texas in 1976. I got involved with our state Coalition of Texans with Disabilities in 1980.

When you were a young individual what was one of your fondest memories? My grandmother was a union and peace activist. She belonged to the Emma Lazarus Women's Organization. I used to attend meetings with her and helped make posters and signs for their events. It was great to see folks really committed working together for change.

How would you characterize your life, and what has made you successful and helped you develop as a leader? Being involved with different kinds of people has shown me that many things motivate people to get and stayed involved. Listening to what people want and working with them for that change has taught me that you can get more done together than you can as one person.

What are the greatest challenges currently facing people with disabilities? There has been amazing advances over the last 30 years but we still face many challenges:

How do you think youth with disabilities can help face this challenge? Young disabled individuals need to work with "seasoned" advocates to learn from one another. Youth can learn from the past and current advocates can learn from the folks coming on the scene to keep fresh new ideas and approaches moving through the disability movement. Developing new or joining grassroots organizations is essential to the ongoing organized advocacy. This will be needed to protect what we have and move forward to the next place in the disability rights movement.

What do you see as your role in helping emerging leaders, how are you helping build the leaders of the future? ADAPT is looking into many different ways to work with and find young leaders in our community. ADAPT is the "Democracy of the Doers"! New leaders set the direction for the future. We are encouraging emerging leaders to come to ADAPT activities. ADAPT is working with organizations that focus on young people with disabilities. We are attempting to do training with individuals and organizations representing young people with disabilities.

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? Get involved with grassroots organizations. Working and advocating with others has a many effects. You can learn different skills and meet others who have experiences that will make your own leadership skills stronger.

When you think of youth with disabilities what type of characteristics do you think are important? Commitment. Tolerance. Tenacity. Focused Anger.

What do you expect or desire from youth leaders with disabilities? Willingness to learn, work with others, commitment to the issues and the ability to see what we are doing in perspective.

Lastly, what is the most important thing you'd like to say to a young leader with a disability?

Mobility International USA coordinates the US/Japan Cross-Cultural Perspectives on Disability and Volunteerism as one of several programs to promote international travel by people with disabilities. In 2005, this was a 16-day exchange program through Mobility International USA (MIUSA). Participants went to Tokyo, Japan and learned about different cultures and different disabilities. Participating youth volunteer for a 6-day international work camp during the trip. They visit different sites and live with a host family, too.

Mobility International teaches young adults with disabilities how to travel abroad. It shows them how to get accommodations. They learn to handle tough situations. And they learn how to handle people who don't understand their disability. It helps young adults know what another country is like. Along the way, young people become more excited about traveling. They:

Help with volunteer work
Meet people from other countries
Educate people about their disability
Eat Japanese food
Visit historic places
Enjoy host families

Emily Holmes was one of 12 participants in this program. She is 23 years old and is a senior at Western Oregon University in Monmouth, Oregon. She has Tourette's syndrome and other disabilities. Emily is studying disability history and culture. She is an active member of the Oregon Youth Leadership Forum. She has also attended NYLN events and serves on the Governing Board.

Caption: Emily Holmes, a 2005 participant, smiles wearing a t-shirt with the message “Disabled and Proud!”

Emily has shared her experiences through her own words, “I met other people with disabilities. I learned about their lives. I learned that people with disabilities in Japan are similar to people with disabilities in the United States. Japanese people with disabilities experience discrimination like we do. I spoke with some of the Deaf students there. And I learned that Deaf people have to learn to speak. But Japanese Sign Language is becoming a little more common. In my opinion, the situation is better in the U.S. American Sign Language is used a lot more often. But many people in the U.S. think Deaf people need to speak to survive.

Japanese culture lets people be independent. In Japan, the people are very helpful. Think about getting on to a stage. If there is no ramp, they carry the wheelchair user up. This is acceptable because people are helping the person. But the person in the wheelchair is frustrated. They feel less independent.

I was out of my comfort zone when traveling abroad. Things are not as difficult as they might seem. I handled difficult situations by myself. I ignored things that were not important. I am not always going to get along with everyone, and that's OK.

I am comfortable traveling abroad. And I know I can do it by myself. I learned a lot about life in Japan. I would love to live and work in Japan someday. I became interested in learning the Japanese language. And I made lots of friends. Some were from Japan and some were from other countries. I learned about culture and rights. And this made me want to learn more. I love being a person with a disability. I love being an advocate. And I am devoting my life to the Disability Rights Movement.”

Young leaders with disabilities between the ages of 18 – 24 can apply to participate in MIUSA programs. Those of different cultures and those of low-income are especially encouraged to apply. Scholarships are available. For more information about the 2006 Summer Program, please contact:

Mobility International USA
PO Box 10767
Eugene, Oregon 97440 USA
Tel/TTY: (541) 343-1284
Fax: (541) 343-6812
Email: exchange@miusa.org