DO-IT News August 2004

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Volume 12, Number 2

Director's Digressions

Sheryl Burgstahler

Meet the 2004 Scholars! DO-IT will soon host its annual Summer Study program for DO-IT Scholars. We welcome twenty-one new participants this year! Primary funding for the DO-IT Scholars program is provided by the state of Washington. Additional funding for Scholar activities is provided by the National Science Foundation, Mitsubishi Electric America Foundation, the Boeing Company, Dynamac Corporation, and NASA.

Russell, who has Duchenne muscular dystrophy, lives in Tacoma, WA. Russell has interests in art and technology and wants to pursue a career in a technology field.

Alex lives in Woodinville, WA. His favorite subject is English. Alex, who has cerebral palsy, hopes to become a writer one day.

Garrett, from Monroe, WA, has a visual impairment. His favorite courses are math and science, and he hopes to pursue a career that is both interesting and challenging.

Lukas, who has a mobility impairment, lives in Spokane, WA. His interests include math, science, music, and chess. He hopes to pursue a career in computer technology.

Laura is from Mercer Island, WA. She enjoys math and science, especially chemistry. Laura has a traumatic brain injury and a visual impairment. She wants to become a secondary education teacher.

Jessica lives in Bainbridge Island, WA, and her favorite subjects are English and world history. Jessica, who has a brain injury that affects her motor skills, hopes to become an elementary school teacher.

Meg, who has cerebral palsy, is from Bellingham, WA. She enjoys math, history, and French. A biology class also sparked an interest in medicine.

Blanca is from Connell, WA. Her favorite subjects are math and English. She also enjoys working with computers. Blanca is quadriplegic.

Daniel, who has interests in computer applications, comes from Shoreline, WA. His favorite subjects are math and science, and he hopes to pursue a career in engineering. Daniel has a learning disability.

Amanda lives in Kennewick, WA, and has cerebral palsy. She enjoys history and English. Amanda hopes to become a special education teacher.

Kathleen is from Vancouver, WA. Her favorite subjects are science and math. Kathleen, who has Asperger syndrome, is interested in a career in life science.

Makenna has interests in English and science and hopes to pursue a career in the entertainment industry. Makenna, who has cerebral palsy, lives in Bellingham, WA.

Katie has attention deficit hyperactivity disorder (ADHD) and developmental phonological dyslexia. She enjoys science, math, and especially art. Katie lives in Kirkland, WA, and wants to pursue a career in science.

Vishal lives in Seattle, WA. He has Duchenne muscular dystrophy. Vishal's favorite subjects are history and language arts. He hopes to become a baseball team manager or a computer programmer.

Maryann has interests in math and science and plans to pursue a career in computers. She lives in Edmonds, WA. Maryann has cerebral palsy.

Carrie, who has cerebral palsy, is from Snohomish, WA. Her two favorite subjects are English and business management. Eventually, she would love to work in musical production.

Julie, who comes from Everett, WA, enjoys reading and writing. Language arts is her favorite subject. Julie has a mobility impairment.

Andrew has a specific learning disability in written language and ADHD. He is from Sammamish, WA, and has interests in math and science. Andrew wants to become a veterinarian or pursue engineering and computer programming.

Michael wants to become an engineer. His favorite subjects are math and science. Michael is from Mill Creek, WA. He has ADHD and Asperger syndrome.

Tracy is from Amanda Park, WA. Her favorite subjects are math and history, and she would like to become an elementary teacher. Tracy has cerebral palsy.

Ashley lives in Sunrise, FL, and has Asperger syndrome. She has interests in drama and theatre and would like to pursue a career in the performing arts.

DO-IT Cohosts Event at AAAS Conference

Val Sundby, DO-IT Staff
Picture of students with disabilities completing a science lab project
Students complete a science project at the AAAS luncheon.

DO-IT teamed up with the American Association for the Advancement of Science (AAAS) to host a luncheon and career workshop for students and scientists with disabilities at the February AAAS annual meeting in Seattle, WA. This event was a huge success, with more than a hundred students, parents, teachers, and scientists in attendance.

Students learned about internships available through DO-IT's AccessSTEM project (www.washington.edu/doit/Alliance) and heard firsthand from previous interns. They participated in hands-on science activities and networked with scientists to learn more about careers that they were interested in. The day concluded with a career workshop where students learned more about preparing for careers in science, including why work-based learning experiences are important. They also developed action plans to determine what steps they should take to maximize their success in the field of science. Feedback from participants included the following:

  • "It was very, very exciting-lots of new and interesting things to see; there were lots of jobs and careers talked about and presented. They had marine biologists, scientists, computer technologists, and astronomers. I was just amazed how many jobs and careers there are in science."
  • "I got to talk to a satellite scientist and learned that opportunities exist at NASA for me, like working with satellites that monitor the Earth—you know, the climate and stuff. I want to do things like plan trips to Mars, build satellites and space vehicles, and design cars."

DO-IT Websites Promote Accessible Postsecondary Campuses

Tracy Jirikowic, DO-IT staff

New web resources were the outcome of work by the DO-IT Admin team at its second collaborative meeting February 10-13 in Seattle. DO-IT Admin team members represent twenty-two colleges and universities nationwide. At the meeting, they developed resources and training materials to help postsecondary student services become more accessible to students with disabilities. DO-IT Admin is funded by the U.S. Department of Education (grant #P333A020044).

Team members developed brochures and web-based information to address accessibility in areas such as housing and residential life, tutoring and learning centers, and libraries, as well as admissions, registration, and financial aid offices. They were guided by information gathered from focus groups conducted with student service administrators and students with disabilities from their campuses.

Two new websites were launched. The Student Services Conference Room is designed to help staff make student services accessible to students with disabilities. The Board Room helps high-level administrators make their postsecondary campuses more inclusive. These websites complement The Faculty Room, which was funded by an earlier U.S. Department of Education grant (#P333A990042). These three websites can be found at www.washington.edu/doit/Resources/postsec.html. Postsecondary disabled student services, academic departments, administrative units, and student services organizations are encouraged to link to this page from their websites.

Hot Topics on DO-IT Home Page

Check out the "Hot Topics" section of the DO-IT website (www/washington.edu/doit) to locate content on

Accessible Distance Learning—how to design online courses that are accessible to people with disabilities
Accessible web design—how to create websites that are accessible to people with disabilities
Accessible IT—resources, training events, and information on accessible technology
Accessible STEM—strategies and resources for making science, technology, engineering, and mathematics available to everyone
Assistive technology—information on technology available to help people with disabilities
Universal design—how to design environments, products, and services to be accessible to everyone
Postsecondary education—websites for learning how to create accessible courses and programs
Careers—resources for students with disabilities, educators, and employers on how to successfully transition to careers
Mentoring—how to provide beneficial mentor and peer support

AccessIT Knowledge Base Matures

Sheryl Burgstahler, Ph.D.

Check out new resources in the AccessIT Knowledge Base at www.washington.edu/accessit/kb.php. DO-IT cosponsors AccessIT, the National Center on Accessible Information Technology in Education. It promotes the development, purchase, and use of accessible information technology in all educational entities. Recent questions answered in the AccessIT searchable database include "What does Section 508 of the Rehabilitation Act of 1973 require?" Basic questions like "What makes electronic and information technology inaccessible to people with disabilities?" and "What is universal design?" are also included.

The AccessIT Knowledge Base compliments DO-IT's AccessSTEM Knowledge Base, which can be found at www.washington.edu/doit/Stem. AccessSTEM, the Alliance for Access to Science, Technology, Engineering, and Mathematics, sponsors a searchable database that includes frequently asked questions, case studies, and promising practices related to assistive technology and the full inclusion of people with disabilities in STEM academic programs and careers. AccessSTEM is funded by the National Science Foundation (HRD-0227995).

DO-IT Scholar Joins U.S. Paralympic Swimming Team

Val Sundby, DO-IT staff
Picture of Justin swimming.
Justin prepares for his trip to Athens.

When 2003 Scholar Justin started swimming as part of his physical therapy regimen, he never thought that it would lead him to the Olympics. But that is exactly what happened. In April 2004, six years after Justin began swimming competitively, he qualified for a spot on the men's paralympic swim team and will compete at the Summer Games in Athens, Greece, this September. Justin practices an average of five hours per day and competes on both his high school swim team and with the WAVE Aquatics competitive swimming program. Next year, Justin will finish his senior year at Lake Washington High School, where he has been appointed captain of the swim team. He will also continue to compete with the U.S. national swim team at both national and international events.

Preparing for College: An Online Tutorial

Sheryl Burgstahler

A new DO-IT resource grew from my article published in the Closing The Gap periodical this winter. Titled Preparing for College: An Online Tutorial, it points readers to resources on the Internet that can help them prepare for college studies. It was developed for students with disabilities, but most of the content is appropriate for anyone who is college-bound. Check it out atwww.washington.edu/doit/Brochures/Academics/cprep.html.

Tech Tips: The Pleasures and Pitfalls of Downloading Music Files

Terry Thompson, DO-IT staff

Thomas Edison invented the phonograph in 1877. Since then, technologies that deliver music to listeners have evolved considerably but not without controversy. Audiocassettes, for example, were initially resisted fiercely by the music industry, which expressed fears that music fans would illegally record and freely share music, rather than paying for recorded products. A similar controversy has once again emerged, as the music industry wrestles with the now widespread phenomenon of music fans downloading and sharing music files over the Internet.

The controversy reached a peak in December 1999, when the Recording Industry Association of America (RIAA) sued Napster™. Napster was an early giant in peer-to-peer file sharing, a technology with which users allow the contents of select files and directories on their computer's hard drives to be freely accessed by other users. Napster and similar services provide a centralized index of these shared files, where individuals can search for, locate, and download songs. The lawsuit alleged that Napster was allowing users to illegally share copyrighted materials. Napster argued that users, not Napster, were responsible for ensuring the files they were sharing were not protected by copyright laws. Naturally, many users were, in fact, violating copyright laws as they freely recorded music and made it available to others. As a result of the lawsuit, the old Napster was effectively shut down. It has re-emerged as a legal fee-based service that pays royalties to the recording industry.

The RIAA has pursued other peer-to-peer file sharing services such as Kazaa™, Grokster™, and Morpheus™, as well as individuals who are suspected of downloading high volumes of music. The RIAA recently settled with four university students, each of whom agreed to pay $12,000 to $17,000, although the trade group had originally sought up to $150,000 per song. On January 22, 2004, the RIAA filed suit against 532 individual computer users, most of whom were college students.

Since college students are among the most active groups of music downloaders, the music industry is asking postsecondary institutions to play a more active role in monitoring content their students download. Several higher education administrators have been outspoken against their playing such a role, as doing so would be a violation of students' right to privacy. There are, the administrators contend, many valid and legal uses of file-sharing technologies, and students should be able to use these technologies without being subject to invasions of privacy.

A few universities have taken creative approaches to solving the problem. For example, Penn State University and the University of Rochester have both signed contracts with Napster through which students receive free access to the now-legal service, which normally costs $9.95 a month. Other postsecondary institutions are exploring similar deals, and file-sharing companies are working to position themselves in this viable market.

Given the aggressive stance of the RIAA, downloading copyrighted music illegally has grown increasingly unwise. In addition to the legal risks, peer-to-peer technologies can pose security risks. Users must be very careful to share only those files they're intending to share. One innocent mistake could allow other users to access personal files, including those containing passwords, financial information, or other private content. Even if the user makes no mistakes, there's always the possibility that a malicious user could find security holes in the file-sharing program and gain more access than the program intends. Also, anytime a file is downloaded to a computer, there is a risk that the file could introduce viruses.

A growing number of secure, RIAA-approved options are available for downloading music files. A few of the services that have emerged include:

Napster

www.napster.com
The new Napster costs $9.95 per month for unlimited listening. For an additional 99 cents, one song can be burned onto CD. Napster boasts of having 500,000 songs from all musical genres. Its software requires Microsoft™ Windows.

Apple™ iTunes

www.itunes.com
Users pay 99 cents per song to download music that can then be burned onto CDs or placed on an iPod™, Apple's portable music listening device that can hold up to 10,000 songs. iTunes claims to have 500,000 songs in its database. Its software comes in both Mac and Windows versions.

MusicMatch™

www.musicmatch.com
MusicMatch requires a one-time fee of $19.99 for unlimited listening. Songs can be downloaded and stored for 99 cents. The software includes many unique features such as Artistmatch™, a service that helps you to locate new music that most closely resembles songs or artists that you particularly like.

Rhapsody™

www.listen.com
Rhapsody is a subscription service from Real™ (the makers of the Real Media Player). It costs $9.95 per month for unlimited listening, and currently costs 79 cents to download and store a song.

Choose services carefully. Several services are available that may seem at first to provide access to music downloads, but in fact the user fee only buys information and assistance with downloading music from other sources. An example of this type of service is www.easymusicdownload.com.

Illegal file sharing—whether it's music, movies, or software—is becoming easier for service providers to track and the industries are increasing their efforts to find and punish those who provide and download these files. Many institutions block the network ports commonly used by these services or will slow the network speed on these channels. Like many things in life, there are legitimate uses for this tool. If you use care and common sense, it can work for you as well.

DO-IT Ambassador Profile

Benjamin, '00 Scholar
Picture of DO-IT Ambassador Benjamin
DO-IT Ambassador Benjamin

Hello, my name is Benjamin, and I graduated from Aberdeen High School in 2002. I am attending the University of Oklahoma (OU). During the summers of 2000 and 2001, I participated in DO-IT as a Scholar. Becoming a DO-IT Scholar was a wonderful experience. As a Scholar, I had the opportunity to meet interesting people, use cutting-edge adaptive technology, and experience what college life was like for the first time.

Now, as a sophomore at OU, I am working toward dual degrees in political science and economics. Following the completion of my undergraduate work, I plan on attending law school.

During my time at OU, I have enjoyed a great deal of campus involvement. I am currently the chair of Sooner Sense Expansion Initiative. The goal of this initiative is to expand OU's current on-campus debit card system to include local restaurants, clothing stores, and other commercial services. My responsibilities as chair include working with the university's administration to design the business structure for the expansion, develop and then implement a publicity campaign to educate OU's students on the new services, and oversee the selection of services to be included within the plan. This leadership opportunity has given me a chance to develop my business skills in a professional setting.

The Thread: Would You Take a Cure Pill?

Sheryl Burgstahler

A DO-IT Scholar recently posed the following question in our Internet discussion forum. I will share with you some of the responses from participants so that you can get a flavor of the rich conversations within the DO-IT community.

A great philosopher once said, "I am what I am, and that's all what I am. I'm Popeye the Sailor Man. Toot Toot."

But, what if you had a chance to change things? What if Popeye was wrong? What if there was a pill that would remove your disability and allow you to join the faceless crowd of the normal masses? If a pill would remove your disability, would you take the pill?

DO-IT Mentor: I get this question a lot when I do trainings at a local community college (probably because my mother is the professor and she likes to prod people to ask the tough questions). Here's my answer: If taking the pill made me lose my friends, family, job (i.e., my life) in addition to my disAbility and made me start over in some random life, well the answer is NO WAY! If I could keep my life the way it is and just be sans the arthritis and its effect, OH YEAH, I'd take the pill.

DO-IT Mentor: I've often said I'd give up a bit of my mobility if it would make the health concerns and extra days spent in bed just go away. If the pill would take away the pain, yes, I'd be all for it. If it would just make me able to walk again, I'd probably take it—unless there were other things I'd have to give up, then it would depend.

DO-IT Ambassador: Who says that we are all "supposed" to hear? Some people are double-jointed and can twist their bodies up like a pretzel—does that mean that those who can't have something wrong with them? Who decides what abilities we are and are not supposed to have? What if all those double-jointed people started pushing some kind of surgery to make the rest of us double-jointed too?

DO-IT Ambassador: ...if it was retroactive, absolutely not... I have had too many experiences that have shaped who I am that I would not have had without my disability. But assuming it's not retroactive... if it could get me a job right away without any questions asked about why I haven't worked before, I'd consider it. (That's actually the biggest obstacle my disability presents me, from my point of view—it is keeping me unemployed.) But there are still many things to consider. In line with those past experiences, what about future experiences? What might I miss out on if I was no longer disabled? Then again, what might I miss out on if I remain disabled? There's no way to know what the future might bring and, either way, I'd never know what I gave up. And what about my life as it is now? The online disability group I run and others that I am a part of... would I still be qualified/welcome to continue?

Wow... when I started this message I actually didn't know what my answer would be. I've thought it all out as I wrote and just realized that no, I wouldn't take the pill under any circumstances. I don't like the idea of somebody deciding we all should be a certain way and then creating a pill to make us that way. Perhaps more to follow after my subconscious gnaws on this a bit more...!

DO-IT Mentor: Ahhhhh, but Popeye also ate spinach to make him stronger than he was. :) Sorry, you're talking to a guy who has over 800 unique Popeye items. . . . As for the miracle pill, I'd take it as long as it wasn't retroactive. I've had so many good things happen in my life because of my disability, I would never change my past. The other condition of taking the pill would be whether or not I felt it was something God wanted me to do. I won't make this a religious forum, but I know God has used my disability in awesome ways. I would need to really pray about how God could use me if I were able-bodied. By the same token, I think such a pill would just be another tool in making me more independent. I mean, I'm excited enough to try out the iBot because of places I could go where I can't now!

DO-IT Ambassador: As someone who has taken pills to help manage my disabilities, I feel I can add a perspective that has not yet been explored in the discussion. Whether or not I or anyone else should or would take a pill to cure our disabilities depends largely upon what those disabilities are in my view. For example, when it came to having seizures, Depakote, the pill that made them stop, was the only way I could be productive or even really be aware of my surroundings. It allowed me to be conscious in order to be who I am. Without it, I was not in control of my life, nor my body. So in this case, taking the pill was an easy choice.

When it comes to Tourette's or attention deficit hyperactivity disorder (ADHD), taking a pill is not such an easy choice. While it may make me "fit in" better, not fitting in has been one of the main things that has enabled me to have different and original ideas and views on things—it allows me to think "outside the box" in a manner of speaking. Having ADHD has also enabled me to complete certain types of tasks much faster than other people, while having Tourette's, with its obsessive compulsive aspect, has allowed me to maintain attention to detail—the combination makes me more effective at MANY things than a "normal" person. The pills which "cure" (more accurately treat) these two disabilities are ones I choose not to take. As I'm sure many of you will agree, having a disability is not always an impediment. I'm sure a great deal of you will also agree that some of the struggles we face and overcome as disabled individuals make us stronger and better able to overcome other obstacles in our lives.

I don't really agree with the idea that our disabilities should DEFINE who we are, as some in the Deaf community have advocated in the case of cochlear implants. It would seem to me that the deaf who can be treated in this manner stand only to gain hearing—they don't lose the ability to communicate via sign language, nor the ability to use their other senses to compensate for a lack of hearing due to the use of implants. Similarly, I don't really see how a "pill" which would cure cerebral palsy, or those otherwise impaired in mobility would change who they are. "Cures" in these cases would seem only to allow more choices about what lifestyle people with such disabilities could lead. Maybe there's something I'm overlooking here—perhaps someone who is deaf and or mobility impaired, blind, etc., can clarify exactly WHY there is opposition, and how they feel it would change the way they live for the worse?

DO-IT Mentor: ...yes, I would take the pill in a heartbeat. However, I don't think less of myself or other people with disabilities because we can't do that. And I know I'm every bit as capable the way I am. I suspect some of my capability is a result of being disabled so I definitely don't regret having been disabled. It did me a lot of good—I'm a better person for it.

DO-IT Pal: I would not take the pill...I love having my disability....who cares if I'm not like able-bodied people? I can do so many things that able-bodied people have never dreamed of doing. Do you know how great of a feeling that is? I mean, if someone asked me, "Would you take the pill?" To me, it's like, "Would you take your soul?" ...My disability is what makes me unique and stand out in the crowd. Never have I felt bad about having my disability. No one really sees me as the one with the wheelchair or the one who walks funny... nope. I have been described as the quiet one or the one with the pretty eyes. People are able to look beyond my chair and see who I really am...inside. That's so important to me. If people can't accept me for who I am, that is their problem not mine...I don't have to change for anyone.

DO-IT Mentor: I'm curious—for those who have answered the question about "the cure pill," or at least thought about it—does it make any difference if you were born with your disability or not?

I think that in many cases it might... if someone was born with the disability, it's always been a part of them and has been something that has been there always as they developed—like eye color or shoe size. (I am not saying these are even remotely alike. I'm just using those two as an example that most people have.) If it was a disability that came along later in life, it seems more like something that "happened" to the person and less of who they are. Not that either of these types make either person more or less disabled. I just think that they might think about such issues differently.

DO-IT Ambassador: Actually, the hardest part of my disability doesn't have to do with pain or health problems. In my case, it has more to do with having to work around my visual impairment. A lot of documents such as mail and job applications are not accessible. It is not always easy to find assistance in reading such documents. In addition, I frequently have problems getting to businesses that require crossing busy intersections.

DO-IT Ambassador: Personally there is no way I would take the pill. I have come to love and embrace my disability. I admit that it is difficult to deal with sometimes but the benefits out way the detriments. I love being able to think at a million miles an hour. It's a trip and I don't think I could live without it. For me there is a pill and I refuse to even look at it.

DO-IT Mentor: I have no desire to be "fixed." After remodeling a home, getting an adapted vehicle and workplace, and shelling out money for wheelchairs, I'd like to get more use out of them first. The question calls to mind the Oliver Sacks' story "To See and Not See" from An Anthropologist on Mars and the movie At First Sight. From a non-disabled person's perspective, getting sight was wonderful and losing it was horrible. But blindness was "normal" for the person "cured" so when the cure failed, he felt a sense of relief.

DO-IT Mentor: I wouldn't take the pill because the cascading effect of the consequences of that action would remove me from myself into someone I wouldn't recognize. Not only do I not want to learn to be myself all over again, I don't wish to remove the diversity—genetically, intellectually, physically, and spiritually—that nature has put in place. I don't really believe in accidents, so I must hold that diversity serves a purpose. Whether that purpose is one of intentional design or the result of a pervasive creative process which is a natural part the universe, makes no difference. Without diversity we stagnate and perish. Without conflict and trial we do not learn. And we are no longer individual spiritual, intellectual, and physical entities with unique capacities such that we alter the substance of history, and hence, the substances of each other, with only our presence and our uniqueness. And that's what I think about that.

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DO-IT News is published at the University of Washington with input from DO-IT staff, Pals, Scholars, Ambassadors, and Mentors. DO-IT is primarily funded by the National Science Foundation, the U.S. Department of Education, and the State of Washington.

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Your gift is tax deductible as specified in IRS regulations. Pursuant to RCW 19.09, the University of Washington is registered as a charitable organization with the Secretary of State, state of Washington. For more information call the Office of the Secretary of State, 1-800-322-4483.

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