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July/August 2007

Vol. 4, No. 4

Leading the way in maximizing quality of life for people with spinal cord injuries and diseases since 1948.

International Forum on Children with Disabilities Brings Focus to Global Issues By Santina Muha, SCILife Staff Writer


elegates from around the world united earlier this year to discuss disability rights, media portrayals of people with disabilities, partnerships with other countries and perhaps most significantly, the recent opening for signature of the United Nations Convention on the Rights of Persons with Disabilities. These, and other important conversations, were part of the second International Forum on Children with Disabilities in Doha, the capital of Qatar. NSCIA Executive Director and CEO Marcie Roth returned to Qatar for the second time to participate on behalf of NSCIA. The forum was hosted by the Shafallah Center for Children with Special Needs, a school and rehabilitation center with more than 350 students. NSCIA has participated in the Shafallah Forums because of their clear commitment to meeting the educational, family and employment needs of

children with disabilities in the Middle East and globally. Attendees included seven First Ladies who were coming together to talk about their country’s participation in the U. N. Convention, and in promoting the rights of people with disabilities worldwide. These influential women from Bulgaria, Rwanda, Panama, the European Union and Albania were led by Cherie Booth, wife of Tony Blair, former Prime Minister of Great Britain. Hosting the event was Her Highness Sheikah Moza Bint Nasser Bin Abdallah Al-Misned, who is the consort of the Emir of Qatar. Anthony Kennedy Shriver was a keynote speaker, and was also there to launch the International Best Buddies program that will be serving people with disabilities in the Middle East. Representatives from Disabled Peoples International were present, as well as Ambassador Luis Gallegos of Ecuador, who hosted NSCIA’s December gala honoring the International Awardees of the Ninth International Congress on Children, Youth and Families with Disabilities. Ambassador Gallegos was also the chairman of the ad hoc committee that drafted the U.N. Convention and the re-

Teddy Pendergrass Celebrates Life, Hope and Possibilities By Santina Muha, SCILife Staff Writer


oul music legend Teddy Pendergrass has a lot to be thankful for. Many people remember his highly successful musical career which began in the early 1970s. And, Teddy became even more widely known in the SCI/D community when, in 1982, he made headlines after acquiring a spinal cord injury in an automobile accident. The road since then has been bumpy, but 25 years later, on June 10, the five-time Grammy nominee remembered and honored those who helped him through the hard times with a concert in which he per-

formed live for the first time since 2003. “Teddy 25 – A Celebration of Life, Hope and Possibilities” was held at the Kimmel Center in Philadelphia, Pa. Honorees included people in the entertainment industry, the medical field, family and friends, and professionals. Proceeds from the event went to the Teddy Pendergrass Alliance (TPA), a nonprofit organization founded by Pendergrass to help provide educational and occupational opportunities for people living with SCI. The impressive list of performers and presenters included Patti LaBelle (who was also an honoree), Bill Cosby, basketball star Julius Erving (aka Dr. J), Vivian Green, Kindred: The Family Soul, Stephanie Mills, Melba Moore, Musiq Soulchild, Philadanco, Joe “Butterball” Tamburro, Dyana Williams and Pendergrass himself. Other Continued on page 8

Greg Smith and Marcie Roth both traveled to Qatar for the second International Forum on Children with Disabilities.

cipient of the American Association of People with Disabilities 2007 Justice For All Award. In the forum’s opening keynote speech, Gallegos said the Convention should be used “to create a society based on justice and equity, where differences among individuals will not hinder their full enjoyment of universally recognized human rights.” Ms. Booth, a longtime advocate for civil rights and an active member of a disability rights group in Great Britain, told forum participants, "I am passionately committed to achieving equality and social justice - much has now been done to tackle discrimination

and oppression on grounds of gender and race, although much is still to be done. Yet we have barely started to tackle the inequalities faced by disabled people.” Greg Smith, speaker, author, television host and subject of the documentary film, “On A Roll: Family, Disability and the American Dream,” also attended the event. He was very impressed. “The Shafallah Center is an awesome place - state of the art technology and beautiful accessible architecture. I was encouraged by the fact that so much money was being spent on people with disabilities in Qatar.” Continued on page 14

Honoree Patti LaBelle and Host Mo’Nique show Teddy Pendergrass love after the Gala.


July/August 2007

July/August 2007

guest editorial

Assessing the State of Accessible Taxis SCILife STAFF MANAGING EDITOR: K. Eric Larson SENIOR EDITOR: Mike Ervin STAFF WRITER: Santina Muha DESIGN AND LAYOUT: Nikolai Alexeev ADVERTISING SALES: Joyce Parker DATA INPUT: Bonnie J. Haynes


BOARD OF DIRECTORS Executive Committee ACTING PRESIDENT: Patrick Maher IMMEDIATE PAST PRESIDENT: Harley Thomas CHAIR, EXECUTIVE COMMITTEE: David Boninger VICE-PRESIDENT FOR MEMBERSHIP: John Fioriti VICE-PRESIDENT FOR CHAPTERS: Deb Myers VICE-PRESIDENT FOR DEVELOPMENT: Milita Dolan SECRETARY/TREASURER: Janeen Earwood BUSINESS ADVISORY COMMITTEE LIAISON: Tari Hartman Squire CEO/EXECUTIVE DIRECTOR: Marcie Roth Directors Pamela Ballard, MD Tapan Banerjee, Ph.D. Jayne Kleinman Paul Mortensen Christine N. Sang, M.D., M.P.H General Counsel Leonard Zandrow, Esquire

SCILife PUBLISHERS PUBLISHER: Charles W. Haynes PUBLISHER: J. Charles Haynes, JD SCILife is a publication of the National Spinal Cord Injury Association 1 Church St., #600 Rockville, MD 20850

SCILife is a publication of the

National Spinal Cord Injury Association SCILife is dedicated to the presentation of news concerning people with spinal cord injuries caused by trauma or disease. We welcome manuscripts and articles on subjects related to spinal cord injuries or the concerns of persons with disabilities for publication, and reserve the rights to accept, reject, or alter all editorial and advertising materials submitted. Manuscripts and articles must be accompanied by a self addressed stamped envelope if return is requested. Items reviewed in New Products Announcements and advertising published in SCILife do not imply endorsement of organizations, products or services. If you have any questions related to your membership with NSCIA, or would like to join, contact us at HDI Publishers, PO Box 131401, Houston, TX 77219-1401, e-mail:, fax: 713.526.7787, or phone us toll free at 800-962-9629. For questions not related to membership, write to: SCILife, HDI Publishers, PO Box 131401, Houston, TX 77219-1401 Our voice phone is 713.526.69.00 fax: 713.526.7787 Email us at or go to

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By Terry Moakley


lthough the Americans with Disabilities Act (ADA) does not explicitly require that taxi vehicles must be wheelchair-accessible, several years ago the New York City Taxis for All Campaign was able to identify more than 75 U.S. communities where such service operates. Accessible taxis transport wheelchair users in large cities like Boston, Chicago, Houston, Las Vegas, Miami, and San Francisco, with varying degrees of success. For instance, several Chicagoans have informed us that it’s difficult to get accessible taxi trips in a timely manner outside the downtown business disTerry Moakley trict, and I have experienced long waiting times for an accessible taxi to arrive on several occasions in Las Vegas. At the same time, major urban centers like Atlanta, Baltimore, Dallas, Philadelphia, and Washington, D.C. reportedly have no wheelchair-accessible taxis at all. I’ve used wheelchair-accessible cabs in Fort Lauderdale and New York, as well as in Vancouver, Victoria, and Montreal, Canada. Where I’ve used accessible taxis in Canada, the service has been safe, convenient, and reliable. Most of my Las Vegas accessible taxi trips have been good once they showed up. In New York my experience with one of the few for-hire vehicle companies with accessible minivans started out well, however, on my third trip request, they said that they could take me to my destination, but that they could not get me back home. This is not good enough! So are we making progress on taxi accessibility in this country? Despite my own up and down experience, I believe so and here are a few reasons why. In April in New York City, the Federal Transit Administration (FTA) sponsored a national accessible taxi summit that included advocates, local government taxi regulators, taxi operators and taxi industry trade associations from across the nation. Ideas like incentives to begin taxi service, driver training and enforcement were discussed and best practices were put on the table. Getting stakeholders on the accessible taxi issue together in one room gave all sides a better understanding of the issues. A second forward step is a new part of the federal transportation law called “New Freedom.” Regulations implementing it became effective May 1. New Freedom funds are available to purchase accessible taxis. To make it work, however, local disability groups must organize to push for this result. The New Freedom provisions are permanent, which is important, as this lends itself to long-range funding of accessible taxi expansion in any community. The development of the first wheel-

chair-accessible sedan taxi prototype -- the “Standard Taxi” -- is a third reason for optimism. Its access features, including a ramp and an upfront wheelchair seating location, will be built-in on the assembly line. The Standard Taxi is designed to be durable, too -- a high priority in the taxi industry because 80 percent of taxis in operation in the U.S. begin their taxi life as used vehicles. Taxis must hold up under constant use and they must be easy to maintain -- yet another feature of the Standard Taxi design. Manufacturing of the Standard Taxi will start in late 2008, and it is expected to sell at a price that is competitive with other sedan vehicles commonly used as taxis today. I believe that it will lead to a rapid increase in the numbers of accessible taxis in a very short time. The Standard Taxi builders will also manufacture an ADA paratransit version of


their vehicle, and this brings me to my final reason for hope that we will soon have more accessible cabs. Remember, it was the FTA that sponsored the New York taxi conference mentioned above. Why? Part of the reason is the reality that public transportation agencies across the country are spending a lot of money every year on ADA paratransit. So, the purchase of standard vehicles as ADA paratransit vehicles should save local transportation agencies both capital and operating dollars. In addition, many people feel that the broader availability of accessible taxis will reduce the demand for ADA paratransit service. I’m one of them. Wouldn’t it be easier to pick up the phone and call a local cab company for a spontaneous accessible taxi trip? I believe that people with disabilities in every city and town in the country deserve no less.

Terry Moakley is director of special projects at the New York City based United Spinal Association. Moakley manages Taxis for All, a North America online advocacy project, found at From 1997 through 2006, he chaired the New York Taxis for All Campaign coalition. is looking for interested volunteers to moderate our on-line forum Please contact us at


If you have a spinal cord injury or have been diagnosed with multiple sclerosis, and suffer from incontinence resulting from an overactive bladder, we invite you to find out if you qualify for the Dignity Study. The purpose of the study is to determine the effectiveness and safety of an investigational medication for controlling symptoms of overactive bladder in patients with these conditions. Physicians in your area are conducting the Dignity Study. Investigational study medication, medical exams, and lab tests will be provided to you at no charge. To learn more, and to find a participating physician in your local area, visit


July/August 2007

from the executive director

Making Work Work By Marcie Roth, Executive Director and CEO, NSCIA


s the parent of a high school junior and a college senior, both with disabilities, and as the CEO of a national disability organization, I think about barriers and disincentives to employment a lot. When I recently talked about 70 percent of people with SCI being unemployed 10 years post injury, I was corrected by someone who pointed out that in fact 30 percent of people with SCI 10 years post injury ARE working… While I think this is an absurd exercise in semantics, the deeper question is, why are some people able to figure out how to “make work work” for them and how can this be replicated for others. Recently, I learned of a man who broke his neck in a bicycling accident just a little over a year ago. I was thrilled to learn that he has already gone back to work as a high school teacher and coach. Bret Neylon’s injury resulted in quadriplegia and he uses a ventilator. The extent of his paralysis would not indicate that he’d be a good candidate to return to work, but he has, nonetheless and so have many others. With some great community spirit, an employer and a vocational rehabilitation agency willing to invest in appropriate supports and technology, and especially Neylon's willingness to figure out how to make it work, the synergy for success seems to be in place. One of his students, quoted in a recent article in his home newspaper, the Indy Star said, “I’m just so grateful that I have him for a teacher.... I'm so excited about this year now.” Whether that was because of his teaching style or a myriad of other reasons why a teenager enjoys a teacher, the message is clear. Going back to work is working for Neylon. Congress attempted to address some of the disincentives when they passed the Ticket to Work and Work Incentives Improvement Act back in 1999, but even though all 50 states offered “Tickets” by 2004, outcomes have been lackluster, at best. For most people with SCI/D, the reason for this is that most still consider the disincentives to work as just too un-

wieldy or downright risky. People are justifiably concerned that they will lose eligibility for Medicaid, Medicare or other benefits that cover the extraordinary health and independent living costs associated with paralysis as soon as their income is deemed too high, and yet the income levels of all but the highest paid workers couldn’t begin to cover those costs. For many, the process of getting SSDI or SSI in the first place may have been so arduous that they don’t want to take a chance on anything that may disrupt eligibility for these important resources. People are also hesitant to return to work because of issues with transportation, personal assistance and often, just the basic fatigue factor associated with getting ready for, getting to and engaging in an eight hour work day. And, until now, the Ticket to Work Program was too stringent for most people to consider trying. Fortunately, there has been quite a bit of pressure applied to getting people back to work, and an equally big enough awareness of the disincentives that some healthy changes may be underway. In fact, the Social Security Administration has announced that they are seeking comments about the Ticket to Work program until Oct. 12. They are proposing revisions to the current Ticket to Work program rules to simplify and improve the definition of “using a ticket” and related requirements for measuring “timely progress toward self-supporting employment.” You may give them your comments by using the Federal eRulemaking Portal or e-mail to regulations@ For those who are ready to begin exploring options for returning to work or even for a first time effort to become a part of the workforce, there are programs that can help you maximize what is in place to achieve successful employment. Many people have gone to Employment Networks for assistance. To learn more about the Ticket to Work program or to find an Employment Network, go to: www.yourtickettowork. com We all need to redouble our commitment to figuring out how to increase that number from 30 percent to a number that includes anyone who wants to work. And we need to be sure that the disincentives and societal barriers are eliminated. Employment Networks have great potential for building important bridges and NSCIA will be looking carefully at what we can do to facilitate opportunities through these important resources.

Vote for 2007 Spinal Cord Injury (SCI) Hall of Fame Candidates. Voting Ends September 30. For more information, visit or email

Formed by NSCIA in 2005, the SCI Hall of Fame was created to celebrate and honor individuals and organizations that have made significant contributions to quality of life and advancements toward a better future for all individuals with spinal cord injury.


Acorda Therapeutics, Inc AOL AT&T Bank of America Cendant Citigroup Darden Restaurants, Inc. Federated Department Stores HP McDonald's Corporation McGuire Associates Medtronic, Inc.

Microsoft Corporation Mitsubishi Electric America Foundation Motorola Inc. Craig H. Neilsen Foundation Pfizer Princess Cruises Royal Caribbean Cruise Line Quickie / Sunrise Medical US Micron Wal-Mart Stores, Inc.

July/August 2007

from the president By Patrick Maher, Acting President, NSCIA


elcome to another stellar issue of SCILife, the flagship publication of NSCIA. A common theme at NSCIA seems to be change, fortunately for the better most times. And, in fact, we have experienced some positive and strategically supportive changes since our last issue. Before conveying some of our positive changes, however, I must note one change within our board of directors with disappointment and respect. Harley Thomas, our president of the board, has stepped down from his leadership role due to health reasons. During Harley’s tenure as president he has had an extraordinary impact on our operations, been a steady and mature hand on the board, and represented NSCIA exceptionally well as the face of the board. His military veteran status has been important in strengthening our relationship with veterans’ groups and this key constituency of SCI/D. We cannot begin to thank Harley adequately for his leadership and passion, and for being instrumental in leading the mission of NSCIA.

As for some highlights of recent positive change, we have recently launched our much anticipated NSCIA E-Store that will feature products relevant to the quality of life of persons living with spinal cord injury or disease – clearly aligned with our immediate and strategic mission. Many thanks are owed to our director of operations and chief operating officer, Eric Larson, as well as to other staff and board members for their hard work to support this important launch. The E-Store will also be a vehicle through which we can help support our chapter network by offering them revenue-generating opportunities associated with the sale of certain of these fine products. Please make a point to visit often – and buy! All purchases through the E-Store go to support a higher quality of life for persons living with SCI/D and those who help support that quality of life. Our senior staff, led by CEO Marcie Roth, along with the board of directors, has been in active discussions with leadership of other potential partners to establish clear, collegial working relationships with the purpose of taking advantage of the strongest qualities/service offerings of each organization in order to strengthen overall services to a larger client and membership base. Additionally, our relationships should create a stronger, more influential voice for change at the highest levels of influence – beginning with our legislators in Washington, D.C. and filtering through legislators at the state and local levels where our members lead their lives. Finally, we’ve had several changes to our board and continue to look to have

our board grow and strengthen our diversity in terms of race, background and experience, passion, orientation to our mission, influence, and other key factors in order to maintain and enhance a robust vision for NSCIA. I thank all of our current board as well as staff for your tireless


efforts to push that mission out through prospective members first, and further to the general public so that our voice is heard and that one day soon all persons living with SCI/D, and all disabilities, can take full advantage of this nation’s opportunities for full inclusion and impact.

Vote for 2007 Spinal Cord Injury (SCI) Hall of Fame Candidates. Voting Ends September 30. For more information, visit or email

Formed by NSCIA in 2005, the SCI Hall of Fame was created to celebrate and honor individuals and organizations that have made significant contributions to quality of life and advancements toward a better future for all individuals with spinal cord injury.


• • • • •

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Bring this coupon to Abilities Expo for FREE admission and save the $5 on-site registration fee. Coupon must be filled out to be valid and may be photocopied for additional registrants. NAME: ___________________________________________________________________________________ ADDRESS: ________________________________________________________________________________ CITY: ____________________________________STATE: __________________________ZIP: _____________ TEL:_____________________________________________________________________________________ EMAIL: ___________________________________________________________________________________ Questex Media Group provides certain customer contact data (such as names, addresses, phone numbers and e-mail addresses) to third parties who wish to promote relevant products, services and other opportunities which may be of interest to you. If you do not want Questex Media Group to make your contact informationavailable to third parties for marketing purposes, simply call 800-385-3085 between the hours of 9 am and 5 pm (EST) and follow the instructions to remove your name from Questex lists. © 2007 Questex Media Group. All rights reserved.

All events are wheelchair accessible.

SCI Life

July/August 2007


THE NATIONAL SPINAL CORD INJURY ASSOCIATION The National Spinal Cord Injury Association (NSCIA) is a non-profit membership organization for people with spinal cord injuries, diseases and dysfunction, their families, their related service providers, policy makers, organizations, hospitals and others interested in the issues affecting the spinal cord injury community. Our mission is to enable people with spinal cord injuries, diseases and dysfunction to achieve their highest level of independence, health and personal fulfillment by providing resources, services and peer support.

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Disability History Week Curricula Spreading Across the Nation By Rebecca Hare


n the 1996 report Achieving Independence, the National Council on Disability (NCD) recommended that schools offer students a disability curriculum that covers history and culture, the Americans with Disabilities Act (ADA), positive attitudes, appropriate terminology and more. Eleven years later, the ADA generation of young leaders is taking this recommendation as its marching orders. Youth leaders with disabilities across the country are letting America know that it’s their right to learn their history! Projects such as the state Youth Leadership Forums (YLF) taking place in 23 states around the country, the National Youth Leadership Network (NYLN) and the 15 youth resource information and training centers all work on helping youth and emerging leaders with disabilities access this critical information. Several states made this a rallying cry to educate all youth about disability history, culture, and community. Two summers ago, West Virginia held a Youth Caucus. The delegates started out as a group of young people with different disabilities, backgrounds and experiences and ended as a community of new leaders, brought together by shared mission of empowerment. During a simulation exercise, designed to teach them about how a bill becomes a law,

they proposed and lobbied for the Justin and Yoshiko Dart Disability History Week bill, which designated the third week in October to be Disability History week, to educate all children in public schools about the importance of the disability civil rights movement. West Virginia Speaker of the House Bob Kiss was so impressed with their preparation and presentation that he agreed to sponsor a real bill, to be written and lobbied by the delegates, in the next legislative session. It passed the House and the Senate in the spring and was signed into law before the summer of 2006. The North Carolina Youth Leadership Network has developed a bill dedicating an entire month to promoting disability history and awareness and has included the development of a consumer driven sex education curriculum for students with disabilities in their state. This bill, and a disability history and awareness bill in Connecticut, are expected to pass this year. Young people in Iowa, Washington, Illinois, New York, Pennsylvania, Kentucky and other states are jumping on board to make this happen. If you’re interested in learning how you can join or spearhead this effort in your state, please contact Rebecca Hare at or 202-822-8405 x127.

Rebecca Hare is the project coordinator for the National Consortium on Leadership and Disability/Youth and is a former youth leader with a disability working to help future leaders make the change that they want to happen in the U.S.

Who’s Who in American Law 1985 through present

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Advocate forthe theSpinal Spinal Cord Injured Attorney for Injured Put nation's top personal injury specialist to workbeen for you.injured Ron Gilbert has(1) helped if the you, a friend or loved one, has by: A over 200 spinal cord injured persons in 35 states collect the compensation they deserve. product or use of a product (e.g. helmet, vehicle even if it is a If you suffered a spinal cord injury, maybe he can help you.

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July/August 2007

Gliding High with Freedom’s Wings By Santina Muha, SCILife Staff Writer


hen I was in high school, I was daring. I loved roller coasters and couldn’t wait to skydive and bungee jump and do all of the things that wild and crazy people do. Somewhere along the line, I lost my courage. I never got a chance to do any of those adventurous things. So when I had the chance to fly a glider plane, I was hesitant at first. After some persuasion, though, I was ready and excited! Freedom's Wings was started in 1980 by Irv and Mary DeAngelo Soble. Their home base is at Van Sant airport in Erwinna, Pa. On June 2 and 3, Freedom’s Wings offered free glider plane flights for people with disabilities in Hillstown, Pa. When I arrived at the air park that Saturday, I saw three glider planes lined up, each attached to a Piper Pawnee tow plane. Overhead flew another glider. My heart began to beat just a little faster. It was hot and muggy. I signed in and was immediately taken to my glider. Wow! That was quick, I thought. I began to sweat. If it was from the heat or my nerves, I wasn’t quite sure. The Freedom’s Wings team helped me transfer into the plane by placing a soft cushion on the rim for me to place my butt on so I could continue the transfer down into the seat. Had I not been able to use my upper body for the transfer, a Hoyer lift was available. The glider was a two-seater. I was in the front. A certified pilot was in the back. As I was strapped in, someone explained all of the gauges on the face of the plane to me, including an altimeter (reads height above sea level), an airspeed indicator (reads speed of the aircraft), and a variometer (reads rising air in lift and going up or sinking air in sink and descending). I have to admit, as I listened to the instruction, my mind was wandering. All I could think was, I hope I don’t crash, I hope I don’t crash...! I thought maybe they should label those dials for people like me whose nerves take over their brains when learning what could possibly be crucial information! The top of the plane was secured and the glider was attached to the tow plane. There was no turning back now! As the tow plane began to move, I quickly felt the glider come off the ground. The more we went up, the more my stomach dropped! Before I knew it, we were 2,500 feet above sea level! I looked down at the houses below, and thought about how refreshing it would be to take a dip in those pools! Every so often I felt a bump. You can probably guess by now that these bumps made me nervous, but the pilot behind me assured me that this was a good sign. Each bump was called a “thermal.” After the glider was detached from the tow plane, these thermals were our source of staying in the air. I glided for about 15 minutes. I have to be honest, although given plenty of op-

portunities, I probably only piloted the plane for three minutes. Luckily the professional pilot behind me had his own set of controls! I did, however video tape the entire experience from the air. I wasn’t going to let this go undocumented! It’s too amazing – I can’t step up a curb, but I can fly a plane! Although I was terrified, I know it is important to step out of your comfort zone every once in a while. Somehow it reminds you that you’re alive. I think after a traumatic accident which results in disability, there are two kinds of people: Those that think, “Lightening won’t strike twice, I might as well seize every opportunity and stare danger in the face!” and those that think, “The world has proven to me that I am not invincible. I need to be careful with my body and my precious life.” Slowly but surely I have crossed from the first type of person to the latter. Still, I am happy to know that I have enough courage, even if just once, to face my fears. And it’s especially nice when the daring adventure is actually a safe ride with qualified professionals who have a {knock on wood} perfect track record. The Freedom’s Wings team did a great job of making me feel comfortable, safe and excited. As I spoke to each member of the team, I could see how much they love giving people the opportunity to get out of their chairs and soar. Please visit or call 1-800-382-1197 to schedule a ride!


Santina Muha prepares to fly a glider plane.

After a safe landing, Muha relaxes with Richard Fucci, program director of Freedom’s Wings.


July/August 2007

Teddy Pendergrass... Continued from page 1

honorees included Regis Philbin, Mark Mays, Cathy Hughes, Whitney Houston, Kenny Gamble and Leon Huff, and Ashford & Simpson. The event was hosted by comedienne Mo’Nique. Many that night used the term “legend” when discussing Pendergrass. Patti LaBelle spoke highly of him and the event. “It’s special because it’s Teddy Pendergrass. And Teddy has shown everybody that if something happens to you, life doesn’t stop. It goes on and on. It goes on beautifully.” LaBelle added, “Before the accident, he was standing up and women were throwing their panties at him and he was catching them. Now he’s not catching them, but they’re still throwing them!” Musiq Soulchild, a young artist and a fan of Pendergrass said, “I’m not only here in support of a great artist, a great musician and a great entertainer, but I’m also here in honor of a great person who persevered beyond and transcends beyond his obstacles.” Singer Stephanie Mills, who has known

Pendergrass since before his spinal cord injury said she found herself in awe of Pendergrass as she watched him struggle. “It made me want to be stronger, do more, because I didn’t have a disability.” Actress and singer Melba Moore, best known for playing Dorothy in “The Wiz,” also watched Pendergrass’ transition from before his injury to the present. “You hear people say all the time that tragedy can make you stronger. It’s one thing to say, but it’s really quite incredible to see.” Host and comedienne Mo’Nique, who brought humor to the evening, remembers the entertainment industry’s reactions as Pendergrass’ life took each turn. “Before that accident, watching Teddy was like, ‘Oh my God!’ And after the accident, everybody was like, ‘Oh my God.’ And when we saw that brother come back, everybody said ‘Oh. My. God!’” Working toward similar goals in terms of the quality of life of people with spinal cord injuries, NSCIA has been working closely with TPA. NSCIA CEO Marcie Roth, who was honored to be a guest at the star-studded event, knows that Teddy’s commitment far exceeds his on-stage presence.

“I Went from the Top to the Depth and Rose Back up.” An interview with Teddy Pendergrass


fter “Teddy 25 – Celebration of Life, Hope and Possibilities,” SCILife Staff Writer Santina Muha interviewed Teddy Pendergrass. SM: What made you decide to hold this gala? TP: My 25th anniversary of being injured. I knew it was coming up when I thought about it last year and I honestly just thought there could be no better way to celebrate it then to say thank you to those that have helped me reach those 25 years. To coincide with that, some of my friends actually wanted to thank me. I was the executive producer of the entire affair from my organization. I conceived the idea, conceptualized it, put the team together, so the whole thing was my baby. I didn’t just show up. I put it together. I lived it for nine months, so everything was based on my decisions. I steered the ship. It was all great. And that’s how I’ve been all my life. I don’t sit around and wait to be told. I am proactive, I get it done. SM: How did you choose who you would invite to perform and who would be your honorees? TP: The process was actually pretty hard because being in this business so long I know a lot of people so I pretty much just kept it to the people that I know really well, that I

deal with regularly and pretty much a Philadelphia based thing. So except for Stephanie (Mills) and Melba (Moore), everybody else was from Philadelphia. So Bill Cosby and Kindred and Musiq, all those people are Philadelphia people. And Patti, we’re all home people. SM: Many people at the event said you have inspired them. Who has inspired you? TP: There are tons of people who have inspired me. It started out with other people in show business, and you’re way too young to know who these people are. They were other people who showed me the character and professionalism and led me to believe that I could do that too. But now, I’ve followed through, made my own way and I raised the bar. It’s always up to somebody to raise the bar. You have organizations that are about cure, and that’s fine. I’m about, “What do I do now? What do I do in the meantime?” I could sit around, literally sit around, twiddling my thumbs and say, “OK, I’m waiting for a cure, I’m waiting for a magic bullet.” Or you can say, “You know, I want to pay some bills and I want to enjoy myself. I want to be an independent, productive individual and have stuff.” That for me is more important than what may happen later. You have to eat every day, you have to pay bills every day, you have to feel useful every day. If

“His commitment Actress and singer Melba Moore with NSCIA’s Marcie Roth and Santina Muha. to building TPA is strong and we are excited to be working as partners with TPA in our shared commitment to maxim i z i n g opportunities for all people with SCI.” Basketball star and close friend of Pendergrass, Julius “Dr. J” Erving was co-chair of the event. He In celebrating the people who have said, “I think it’s always important for people to find their niche in life. Teddy’s niche, helped him along the way, Pendergrass himsince he understands his fate and has de- self was celebrated. Attendees and honorees cided to be a productive person, is a neces- were there because they love and admire a sity, because I think it inspires people who man who has gone through a physical have spinal cord injuries to know that they change but remained the man he has always can have a quality of life. Sometimes things been. His newest song even celebrates this. As his journey continues, his friends and are taken away from your life and it just enhances other aspects and characteristics of fans clearly expect Pendergrass to succeed in ways that only a true legend can. your being.”

not, that’s how people get depressed, why people live on SSI, why people don’t aspire to anything. Because they’re hopeless. They have no way of feeling they can ever do anything. It’s like being suddenly spinal cord injured is a death sentence. All you do is lie around and wait to see what comes on TV next. With organizations like NSCIA hopefully we give people access to things that will give them opportunities to live a life, and these are the people that I search out to work with. The Teddy Pendergrass Alliance means that I am working with other people to make things happen, always to benefit people with SCI. That’s all I can talk about. I can’t go across the board with disabilities because I can’t speak to all of those. I can’t help everybody; I can help the people that I can relate to. SM: How do you stay fresh and new as an artist? TP: I don’t. No, I don’t. I think that the things I have been fortunate to have accomplished constantly stand up. It doesn’t need to be reinvented. There can’t be another Teddy Pendergrass, like there can’t be another Elton John. There can’t be another Elvis Presley. There can’t be another Barry White, Marvin Gaye. There can’t be another. Those are people who have left marks on humanity, on society. What they do is unique unto them, so you don’t worry about staying fresh. When you’re a true superstar you don’t need to do that. Just be who you are. There’s only one Celine Dion, there’s only one Dionne Warwick. You know, you can’t replace that. So, in 20 years if Celine Dion decides, “I’m done, I’m tired of what I’m doing,” and decides in 10 years to come back, there will be nobody that will take her place. If she decides to come back out in 10 years and do what she wants to do, her audience

will be there. I’ve stayed off the stage for 19 years, went back on tour in 2001 and my audience was there. So I don’t do anything to stay fresh. I just continue to work methodically and try to make sure that my heart is in the right place, and I do the right thing. And that in and of itself keeps you, hopefully, attached to your people. SM: As a celebrity with SCI, do you feel a sense of responsibility to bring awareness to it? TP: More than awareness. I think there is a sense of urgency for people to have a can do spirit, attitude. You can have a productive life. That’s why “Teddy 25 – Celebration of Life, Hope and Possibilities.” Because I went from the top to the depth and rose back up, so there are numerous and endless possibilities and I want that message to be conveyed and as an example of what can happen. So for me, it’s an opportunity to utilize my celebrity and my ability to make sure other people know they have opportunities available and that there are avenues and resources. That is my reasoning for partnering with NSCIA. I don’t partner lightly. I don’t really need partners. But when I see someone who believes or an organization that believes in what I believe in and we can work together in synergy and commitment for our cause and purpose, then that’s what makes sense to me. SM: Do you think you will do this again in another 25 years? I’m going to do many other fundraisers, but there can only be one 25. That was done one time and that’s that. Now I’m off onto other things. My creativity comes up with so many things, there’s no end to that. I write songs, I decorate my house. As long as it’s creative I’ll try it.

July/August 2007

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July/August 2007




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Got a Story? Share it! "I know what it's like to face a life changing event like a spinal cord injury, and how much the right support can mean to someone in those first few days and weeks after the injury. I've been truly blessed in my life and this is a chance for me to make a difference for others." -- Soul music legend and SCI Hall of Fame member, Teddy Pendergrass

The Teddy Pendergrass Alliance and NSCIA are developing an interactive DVD to carry a message of hope and tangible support for people with new spinal cord injuries or disease.

If you’d like to share your story, or know someone else who might, visit



July/August 2007

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July/August 2007

Navigating Claims against Airlines By Len Zandrow, NSCIA General Counsel


nfortunately, memories of summer vacations and air travel are not always entirely pleasant for persons with disabilities. Even with the increase in wheelchair travelers taking to the skies, accommodations at airports and on planes are too often inconsistent and unsatisfactory. This article briefly outlines some of the key rights of air travelers with SCI and summarizes the steps for filing a legal claim, if necessary. The cornerstone of legal rights for air travelers with disabilities is the Air Carrier Access Act (ACAA). This federal statute was enacted by Congress in 1986, and is set forth in detail at Title 49, Section 41705. The law prohibits discrimination and requires airlines to accommodate the needs of passengers with disabilities. Congress has given the Department of Transportation (DOT) specific authority to enact regulations implementing the ACAA.

These regulations are set forth in Title 14, Part 382 of the Code of Federal Regulations. They have the full force and effect of law.

Discriminatory Practices Are Prohibited The DOT regulations prohibit airlines from refusing to transport people on the basis of their disability. Airlines may only exclude a person from flying if doing so is necessary to prevent serious danger to the flight. If an airline makes such a decision, it must provide the traveler involved with a written decision explaining its rationale. Generally, airlines may not require prior notice that a person with a disability is traveling. Airlines may, however, require up to 48 hours of advance notice for certain accommodations that require special preparation time, like a respirator hook-up. Airlines are not allowed to limit the number of disabled persons on a particular flight. In addition, they may not require a disabled passenger to fly with an attendant, except in certain limited instances. If the airline and the passenger disagree about the need for a personal attendant, the airline may supply its own attendant, but must pay his or her fare. Airlines must also accommodate passengers using service animals. Service animals need not travel with checked baggage, unless no seats are available on the aircraft. For individuals traveling with service ani-


mals, the airline must provide a bulkhead seat if requested.

charge for providing accommodations required by the regulations.

Facilities Must Be Accessible

How to Assert Your Legal Rights

Airports and aircraft must both be accessible. Terminals are places of public accommodation and must conform in all respects to the standards of the Americans with Disabilities Act. Planes built after 1990 with 30 or more seats must have removable armrests on at least half of the aisle seats. The lavatories on newer wide-body planes must be fully accessible. Newer planes with 100 or more seats must have priority space for storing a passenger’s folding wheelchair in the cabin. Planes with more than 60 seats must also be equipped with an operable onboard wheelchair. If the aisles on the aircraft are too narrow to accommodate an individual’s wheelchair, the passenger may need to transfer to a smaller aisle chair. If a passenger using an aisle chair cannot readily transfer over a fixed aisle armrest, the airline must provide a seat in a row with a movable aisle armrest. Airlines are also required under the DOT regulations to provide assistance with boarding, deplaning and making connections. Such assistance includes the use of services personnel, ground wheelchairs, on-board and aisle wheelchairs, ramps and mechanical lifts. In no case shall airline personnel be required to hand-carry a passenger in order to provide boarding assistance. Wheelchairs and other assistive devices have priority for in-cabin storage space over other passengers’ items. Airlines may not

The ACAA provides a comprehensive, three-tiered enforcement scheme. The first tier is enforced by the airlines themselves, the second tier is administered by the DOT and the third tier involves review by the federal courts. Airlines must designate “complaints resolutions officials” to respond to complaints from passengers. These officials must be readily available at each airport served by the airline, either in person or via telephone. These officials must be familiar with the DOT regulations and must have the authority to resolve any ACAA-related complaints. If the passenger disagrees with the airline official’s decision, he or she may file a formal complaint with the Secretary of Transportation under 49 U.S.C. sec. 41705(c)(1). If the Secretary decides that there appear to be reasonable grounds for the complaint, the DOT may impose up to a $25,000 fine for each violation, 49 U.S.C. sec. 46301, or it may separately initiate a civil action in the federal district courts to enforce the ACAA. The ACAA also gives individuals the right to appeal any adverse decision by the Secretary to a federal appellate court. 49 U.S.C. sec 46110(a).

This article only briefly summarizes an air traveler’s rights and remedies under the ACAA. For more detailed information, you may wish to consult this DOT web site:

SAVE THE DATE! Join us in recognizing excellence as we celebrate and honor those who have made significant contributions to quality of life and advancements toward a better future for all individuals with SCI at the third annual

Spinal Cord Injury (SCI) Hall of Fame Gala November 6, 2007

The Kennedy Center for the Performing Arts Washington, DC For information, visit


July/August 2007

International Forum... Continued from page 1

While in Doha, Roth also had an opportunity to visit Rumilah Hospital, which is part of the Hamad Medical Corporation. She visited the physical medicine and rehabilitation department. “They were very welcoming and I had a great opportunity to learn more about what’s happening for people with SCI and other traumatic injuries and how NSCIA might work with leaders in the Middle East on shared initiatives.” In Qatar, the incidence of SCI is extremely high, with motor vehicle accidents and industrial accidents due to the massive construction as two major causes. Roth said, “The skyline in Doha is filled with cranes. I heard some amazing statistic that there are more cranes in Doha than in any other place in the world right now. I don’t know if that’s a fact but it wouldn’t surprise me. Everywhere you look there are brand new glassy, shiny buildings, because Doha is a very rapidly growing city in a part of the world that is heavily investing in their future.” Also according to Roth, “Where other countries in that region are investing in tourism, Qatar is heavily investing their considerable resources in education, healthcare, sports and culture. . . During my hospital visit, we talked about what a great opportunity it is for Qataris to lead the way in accessibility and opportunities for employment and community living.” But to what extent is this growth explosion designed to include people with disabilities? Roth said, “Just the same as any place else, there’s often a disconnect between building the infrastructure and maximizing opportunities for people with disabilities so the commitment is still fragile at this point. One of the reasons we’re so excited about the promise within the U.N. Convention is that it does address many of these kinds of important accessibility issues. Countries that don’t have laws NSCIA CEO Marcie Roth (left) and Lady Madame Jeanette Kagame, first lady of of Rwanda.

governing the rights of people with disabilities don’t necessarily infuse those very important decision making points into building permits and program design.” However, according to Roth, all the construction injuries have opened up creative approaches to rehabilitation for those injured on the job. “Many of the people who have been injured are not citizens of Qatar. However, Rumailah Hospital doesn’t discharge people with SCI and traumatic brain injuries until employment related settlements are finalized. So if someone from Indonesia, for example, who’s been in the country as a construction worker, becomes traumatically injured and can no longer work in construction, the hospital staff will help the individual to continue to receive appropriate treatment until the final resolution of a settlement with their employer. And then the staff will assist that individual to travel back to their home country so that they have the resources that they need in order to continue their recovery and establish their future. So hospital discharge is not based on a set number of days. Instead, hospital discharge is based on having in place what’s necessary for the individual to move to a less restrictive environment.” Both Roth and Smith felt embarrassed that the U.S. has not signed the U.N. Convention. “I felt very comfortable and welcomed by the people of Doha and especially people at the Shafallah Center,” said Smith. “I did feel a little sensitivity to how people responded to my being an American. I think it may have been because I felt awkward about being from a country that did not sign the U.N. Convention. Nobody said anything about it in a negative way, but the question was brought up a few times and that made me feel a little awkward.” This event, however, did not focus on those differences. Roth noted, “For the second year in a row we were looking at our similarities, and I think everyone involved came away with a very strong sense that this world is a much smaller place because of

the similarities of people with disabilities and their needs, as well as our need to work together and connect on the very common ground that people with disabilities find themselves on.” This Forum once again proved to be of great importance to the disability community at large, and to NSCIA. Expanding networks globally is vital to learning from and providing support to partner organizations around the world. Roth believes building those types of relationships is invaluable. It was also a great opportunity for people with SCI/D to be woven into the larger international disability rights discussions that are going on in association with the U.N. Convention. Roth said. “I truly believe that a shared commitment to addressing the needs of the 650 million people with disabilities around the world, could be that unifying factor that brings us together on other, more contentious issues.” As the United States continues to make advances in technology and so many other areas, the global disability community continues to make their voices heard so that accessibility will be incorporated into these ongoing changes. It is comforting to know other countries are doing the same. As advocates push for the United States to join the other 100 countries who have signed the U.N. Convention, it will be interesting to watch the growth among those countries who are assuming the leadership on which the U.S. has historically prided itself.

Got a Story? Share it!

VOLUNTEER OPPORTUNITIES AT NSCIA Are you looking for a way to make a difference? Volunteering with the National Spinal Cord Injury Association (NSCIA) offers the opportunity to do just that – and in a way that fits your levels of experience and availability. Since we have a national Chapter network, and so much of our work is done via phone and email, we can work with any motivated volunteer no matter what they live. Volunteer support is vital to our organization's ability to accomplish as much as we do with limited staff and budget. You can make a difference by… …building resources. The Development Committee helps NSCIA identify and connect with sources of funding and foster the development of the Association’s financial well being. …raising voices. The Communications Committee works with the VP of Communications and NSCIA staff to facilitate communications both within and outside the Association. …growing our membership. The Membership Committee works with the VP of Membership to promote the growth and development of the Association’s membership and helps to build and communicate the value of membership in NSCIA.

"I know what it's like to face a life changing event like a spinal cord injury, and how much the right support can mean to someone in those first few days and weeks after the injury. I've been truly blessed in my life and this is a chance for me to make a difference for others." -- Soul music legend and SCI Hall of Fame member, Teddy Pendergrass

…supporting special projects. Our Resource Center also uses volunteers on a project basis, depending on current activity, ranging from research to phone/email contact to planning or staffing events.

The Teddy Pendergrass Alliance and NSCIA are developing an interactive DVD to carry a message of hope and tangible support for people with new spinal cord injuries or disease.

Committees typically meet monthly via teleconference, and time commitment varies but can be average little as 2 - 5 hours per month depending on your committee, or as high as you want, limited only by your passion for progress.

If you’d like to share your story, or know someone else who might, visit

If you would like more information or to apply to serve as an NSCIA volunteer, please contact Eric Larson at 847-997-2109 or

…working with local Chapters. Most of our national network of Chapters also use volunteers and we would be happy to connect you with a Chapter in your area.

July/August 2007

in motion

Accessible Golf Anyone? By John Fioriti


he game of golf offers endless benefits to all who play. Golfers receive health benefits from the physical activity, experience greater quality of life from the social nature of the game and acquire feelings of self-determination and confidence. Authors Dr. Peter Ryan and Michael Chorost of SRI International assert that these “social and cultural attributes make golf an excellent basis for programs which aim to teach skills that can be used both in the sport and in life.” In addition, golf is one of the few sports where participation spans across generations, making it truly a lifetime activity. Jerry Donovan, a member of the Boston chapter of NSCIA with a SCI, appeared on Fox news in a new personal mobility device that allows him the opportunity to play golf from a standing position. Standing chairs have been around for a long time; however this is the first time one was designed to give users full access to the outdoors and the ability to enjoy an afternoon on the golf course with ease. Previously, golfers have used accessible golf carts designed with swivel seats that allow the rider to set up for a shot with shortened golf clubs or they could use standard clubs and address the ball from a little further away in order to give it a ride down the fairway. The Para Mobile chair is the first of its kind to allow the player to position himself over the ball using standard clubs and get a full swing in from a standing position with a little torque from the hips, which is an added benefit when driving the ball, increasing the amount of impact that can be delivered with the shot. This gives the user more power and confidence and the closest proximity to playing the game from an upright position. Donovan says his breathing is better and his back pain has gone away. Even more advantageous, Donovan says, “I can reach the ball on the ground all by myself, tee the ball up, access the ball anywhere on the course and play independently without having to ask for help.” His friends even made a device so he can pop the ball out of the hole. Donovan's goal this year had been to par a hole. He surpassed that goal with a recent Birdie. Dennis Walters is one of only eight people to be named an honorary lifetime member of the Professional Golfers’ Association (PGA). He also has inspired thousands of people to put aside their trepidations and take up the sport. He has dedicated his life to encouraging and teaching people the game of golf. Not only can he put a golf ball anywhere he pleases with amazing precision, when he performs, his array of trick shots will astound everyone in his audience as he pops a ball through hoops, through fire and with 30 different types of golf clubs including a garden hose. Walters’ message goes beyond golf, as he delivers an awe inspiring golf show with shots no other human has ever dared to make, and underneath it all is

a strong positive message about setting goals and daring to make your dreams a reality. His real hope is that at least one person in the crowd will forget their personal limitations and give golf a try. Walters was well on his way to joining the PGA tour before he was injured when a golf cart overturned on him. He said on the first day he returned to the game he loved, he knew that he could never play the way he did before. This is something he struggled with as most people do when they return to an activity they did before their injury. “It was one of my biggest challenges,” says Walters. “I knew I needed the right attitude. What I did was focus on, ‘How am I playing today? How can I improve?’ It’s not the same, but its worth trying.” Walters improved his game a little each day. He has been an ambassador for the PGA, recently entertaining 800 kids in Norton, Mass. for the PGA’s youth clinics. He’s working with the United States Golf Association on bringing golf to inner city youth, people with disabilities, young girls, and kids in rural America. To find out when Walters is visiting your area, visit Walters is thought by some to be the first person to adapt his own golf cart with a swivel seat 32 years ago. But today there are so many carts that John Nicholas’, not to be confused with legendary golfer Jack Nicklaus, reviews many accessible golf carts on his website GolfCars.html, where he shares his firsthand experience using all of the different types of accessible golf carts on the market. The Solo Rider is one of the best known of these accessible golf carts, and received

Dennis Walters plays in a customized Yamaha golf cart, equipped with a passenger side swivel seat.

high marks from Nicholas for its design and durability. It has a hydraulic stand up seat that gives the golfer great positioning for a shot. Another cart he recommends is the Model Tee. Besides the cute name, this cart is reminiscent of Ford’s Model T. The advantage of this model is that the foot rest is attached to the swivel seat, so the operator can turn to-

wards the ball without having to readjust his legs each time. Without this, in an 18-hole game, if a person playing with paralysis had to swing five times per hole and lift and move each leg three times per hit, they would have to pick up and move each leg 540 times. Needless to say, the Model Tee is a tremendous time and energy saver.

ACCESSIBLE GOLFING RESOURCES National Alliance for Accessible Golf e-mail: voice: (703) 234-4136 According to the National Center for Accessibility: People with disabilities WANT to play golf. In fact, 10 percent of people with disabilities play golf. Twentytwo percent of those that are disabled are not playing golf, but did prior to their disability. Thirty-five percent who currently are not playing would like to play. Advocacy Organization for Accessible Golf Accessible Golf Course listings Accessible Golf Cart info Para Mobile (603) 860-7891 First Swing The First Swing enables individuals to enjoy the unique, friendly atmosphere found on the golf course. Project Gain Project Gain is a national research and development


project funded by the PGA Foundation, United States Golf Association Foundation and the PGA Tour. The project is designed to be a comprehensive communitybased program, using the game of golf as the primary vehicle for maximizing opportunities that ensure the inclusion of people with disabilities within the fabric of local communities.

Project Gain has official sites in:

Missing Copies of SCILife?

Howard County, Md. Department of Recreation and Parks 7120 Oakland Mills, Road Columbia, MD. 21046-1677 Sacramento, Calif. Disabled Sports USA Far West 6060 Sunrise Vista Drive, Suite 2540 Citrus Heights, CA 95610 Phone: (916) 722-6447 Salt Lake City, Utah Annex C, RM 1085A 250 S. 1850 E. RM 200 1901 E. South Campus Drive Salt Lake City, UT 84112-0920 Phone: (801) 581-8754 Toledo, Ohio The Ability Center of Greater Toledo 5605 Monroe St. Sylvania, OH 43560 Phone: (419) 885-5733

Become a member of our on-line community and get instant access to all previous SCILife issues.



July/August 2007

board profile

Debbie Myers, VP of Chapters, NSCIA By Eric Larson NSCIA Director of Operations


ebbie Myers took on the role of vice president for chapters of NSCIA and has since become the “voice” of NSCIA to Chapters, Support Groups and other organizations considering affiliation with NSCIA. Myers was injured in 2001 in a fall that resulted in paraplegia due to a T12 incomplete injury. Her family reached out early to NSCIA for education and information about spinal cord injuries, but Myers’ involvement came later. “I don’t think I really noticed what NSCIA was all about or took advantage of the resources available until later in my recovery,” says Myers. “I was focused on rehab and getting home. But, once home, the NSCIA resource center became an invaluable tool as I tried to figure out my next steps.” “I have a very proactive nature and I had a lot of questions about SCI and what opportunities or options were available to me. Some of the information I was finding was national, but still it was extremely helpful in

finding local resources as well. It was still challenging tracking down specific resources or opportunities here in North Carolina and I was meeting others in rehab and support groups with similar frustrations and a shared desire to find a better way to organize or share.” Myers solution was to become more involved with WakeMed Rehab and the SCI program there, where she worked with others to form the North Carolina Spinal Cord Injury Association (NCSCIA), formally approved as chapter of NSCIA in 2003. Myers is chairman of NCSCIA which has 80 members and reaches out to an additional 360 individuals in North Carolina. She was Ms Wheelchair North Carolina in 2005, testimony to both her growing involvement in the SCI community and her effectiveness in those roles. Myers has served on NSCIA’s Membership Committee and the 2006 SCI Hall of Fame Selection Committee. She played a support role for the previous VP of Chapters, Shawn Floyd, before being elected by her peers as vice president of chapters. Myers believes NSCIA provides great value to its constituents, and believes a strong relationship between the national office and chapters can be an important part of this value. “The more I’ve been involved with NSCIA, the more impressed I’ve become with the level of commitment and compassion that NSCIA leaders hold for the SCI/D community, as well as their commitment to strengthen the relationships and communication between the national office and board, and chapters.” Before her accident, Myers knew little

North Carolina Spinal Cord Injury Association The North Carolina Spinal Cord Injury Association (NCSCIA) joined the ranks of NSCIA Chapters in November 2003. The group was created by current NSCIA Vice President of Chapters Deb Myers and others in the SCI program at WakeMed Rehabilitation Hospital. Debbie Myers is chairman of NCSCIA which has 80 members and reaches out to an additional 360 individuals in the state. “Our goals and programs are centered on support, communication, information and advocacy,” says Myers. NCSCIA is actively involved in its fourth year and is currently the only NSCIA chapter in North Carolina. Highlights of the past year include a third annual conference and several adaptive sport clinics, including hand cycling, rock climbing and wheelchair rugby (quad rugby). Based on the success of the clinic and continued interest in quad rugby, NCSCIA developed a new wheelchair rugby team in eastern NC, the Raleigh Sidewinders. The Raleigh Sidewinders are official members of the US Quad Rugby Association and competed in several tournaments this past season. The team hosted their first tournament in March 2007. In addition to annual conferences and

adaptive sports clinics, NCSCIA has hosted several guest speakers, including Sam Maddox, Knowledge Manager of the Christopher and Dana Reeve Paralysis Center, and Gary Karp, “Life on Wheels” author and motivational speaker. Maddox provided a current update on research activities and Karp shared his personal and professional journey of adjustment, breaking through the negative social assumptions about disability NCSCIA continues to develop their website and support programs. Additional social activities include regular movie and pizza nights, several monthly support groups, holiday dinners and various workshops. “We are encouraged by our steady growth in membership across the state and increase in vendor support at our events,” says Myers. “We are currently in the planning stages for the debut of a major fundraising event this fall that we plan to hold annually. We’re also in the initial phase of a new working relationship with the Governor’s Advocacy Council for People with Disabilities, which we are very excited about. We are in a good place. We have developed a solid base and continue to expand our network.“

about SCI, the rehab world, ADA issues or the extreme challenges of working with insurance companies. At the time of her accident she was an executive with Sprint, with responsibility for eight call centers and 800 employees nationwide. She has a degree in finance and strong background in customer service. “I had a strong team and have always been proud of their accomplishments,” says Myers. “I’m thankful that I can continue to develop my skills and utilize my professional background and network in developing our state chapter, NCSCIA, and with the work I’m involved with at the national level. We have some really strong chapters and proactive individuals leading those groups. The state teams have great ideas and many had the opportunity to express their ideas and concerns at the 2006 Summit. One of our challenges is the management or implementation of these ideas. I would like to continue to develop effective communication between the chapters and national and I know chapters feel strongly about this also. I’d also like to strengthen the network among the chapters themselves. I’m familiar with many of the activities among the individual chapters but the flow of information between the chapters could be stronger. We have the tools like, SCILife and NSCIA eNews, and we’re working to improve the communication among their chapter peers. Plans include regular chapter conference calls and a Chapter Leadership Development Workshop in November. Additionally, we hope to initiate regional face-to-face meetings with the chapters. Consistent sharing of information and working with the strengths of the individual chapters can only improve our network at all levels.” In addition to her substantial work in the SCI/D community, Myers makes time for much more. “After my accident, I struggled to find myself again. I was very used to activity and taking care of others. I worked through this time by looking at this phase of my life as a project. What action items would I need to reach my goals? By asking these questions, researching my options and working toward my goals, I’ve been able to celebrate some great milestones since my accident.” “I have three bright lights in my life, my niece and two nephews. Of course I’m prejudiced, but they’re the greatest kids and definitely motivation for me. I want to be a positive role model for them. I hope I can teach them to work through adversity, focus

Debbie Myers as Ms. Wheelchair North Carolina. on milestones and celebrate successes.” Myers is an avid gardener and raises a range of flowers and vegetables. Dogs are also a big part of her life. She describes her Chesapeake Retriever, Ally, as “a great companion, a bit spoiled and extremely playful.” It has also been rumored that neighborhood dogs also hang out at her house as word about the “treat lady” spreads. Myers grew up in Illinois and graduated from the University of Illinois in 1984 with a Bachelor’s in Finance. She moved to North Carolina in late 1993 due to her job with Sprint. Over the next several years, her brother, sister and dad relocated to NC. “I still have a lot of family back in Illinois and try to go home several times a year,” she says. “Debbie is one of those people that gets things done without expecting a lot in return,” says Debbie Johnson, who first met Myers when Johnson was her physical therapist in rehab. “If you didn't spend a lot of time with her, you would never know how much behind the scenes work she does. Her personality is one that is comfortable doing the under-the-radar, thankless work in order to get good results. She expects no accolades or glory in return and is merely happy to see the fruits of her labor. She is one of those rare and priceless people who does what she does, not for recognition or to earn a spot in heaven, but because it is the right thing to do and she enjoys providing opportunities for growth and access to other people with SCI/D.” Myers with niece and nephews.

July/August 2007

resource center Accessible Home Building after SCI By Bill Fertig NSCIA Resource Center Manager


fter I was spinal cord injured in 1999 and began using a manual wheelchair, my house needed accessibility remodeling before I could return home from rehab. Almost no traditional existing home or apartment is truly wheelchair accessible and mine was no exception. For instance, there was a first floor bedroom but no bathroom. My resourceful wife, Noreen, used Paralyzed Veterans of America literature as a resource to design a new, fully accessible bathroom and family and friends did the work before I returned home. Eventually it became clear that this home would not meet our long term needs because areas such as the laundry room and garage remained inaccessible. So, we built a new home. You may choose to build your own accessible home to meet your long-term needs and lifestyle. Keep in mind that your needs may change over time. Allowing for an attendant living area or other features you do not necessarily need now may be wise. Building a home can be one of the most stressful experiences in life, but if you are able to keep focused on the eventual goal (and keep your

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sanity) it can be one of the most rewarding as well. Keeping in mind that every situation is unique to some extent, and that our experience may differ from yours, this article summarizes some of the key concepts we kept in mind during the design phase. SITE SELECTION Lot size, price and personal preference were our initial guides. How our home design fit on the site was important too. We considered the floor plan during site selection. After identifying the site, you may wish to consult with the building inspector for your locale and the respective utility companies to confirm access to water, sewage, electric, natural gas, phone and cable connections. Even though needed services are available, will their location or the utility companies’ regulations restrict your choices? Several of these issues resulted in changes during our building process. FLOOR PLAN We chose not to use an architect to design the home to help control expenses. We interviewed multiple builders and once we had our preliminary floor plan, we chose the builder who exhibited the most interest in building what WE wanted, not what THEY preferred. I visited a nearly completed home constructed by our builder to verify the quality of his work before we signed the contract. ENTRY You need not have a ramp at entry points. Our site is gently sloped and the finish grading allows for a no-step entry to front, rear, basement and garage. This serves everyone’s needs and is more aesthetically pleasing to

some. It is very functional for me as a wheelchair user yet blends in with the overall landscaping. GARAGE If you plan either an attached or an integral garage, check with your local building inspection department regarding step-down requirements. Normally, a garage is built at a minimum of four inches lower than the main floor to prevent gasses from entering the home. This requires a ramp inside the garage resulting in additional effort and space wasted. You may be required to apply for a variance to your local codes but you won’t know until you ask.

space, including a minimum 52-inch turning radius. Appliances have front controls that are easy for me to reach. An under sink cabinet with a front set back allows me to get partially underneath the sink. A second, lower sink has a shallower sink bowl and deeper cabinet setback for me (Now I have to do more cooking though!). We also added to the regular counter space a 30-inch high kitchen table supported by a 6-inch wide wall centered underneath and anchored at one end for stability. This doubles as a multi-purpose work center that I can get under on three sides.

ACCESS WAYS Your new home plan should allow an optimum of 48 inches (minimum of 40 inches) for hallway and other access paths. In our ranch style home, our “great room” contains the kitchen, living and dining rooms separated by furnishings. This offers unlimited access and furniture configurations in the open areas.

BATHROOMS This is where attention to detail proved invaluable. Obviously, the more room that is available the better but wasted space is wasted money. I use a combination shower/commode wheelchair to avoid unnecessary transfers and the bath design needed to allow for that. Our bathroom has a minimum 52-inch center turning circle, toilet placement within an otherwise unobstructed 36-inch space next to the vanity, a ceramic tiled shower stall with centered three-quarter inch lower floor drain, a variable height shower head mounting on 6-foot hose and a wall mirror extending upward from vanity. For purposes of this article, I consulted with Rosemarie Rossetti, PhD. Dr. Rossetti is also a wheelchair user and is currently involved in building her own fully accessible home. Visit her Universal Design Living Laboratory:

KITCHEN Opinions and needs vary in the kitchen. Our kitchen has plentiful maneuvering

For more on home modifications and Universal Design visit and choose: Home Modifications

DOORS We chose 36-inch doors throughout the house, which is optimal. A minimum of 32inch clearance may be acceptable (or clear opening greater than the width of your chair). A simple, composite door of 36 inches is comparable in price to smaller doors. Move in was a breeze with the large door openings.



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July/August 2007

NSCIA CHAPTER & SUPPORT GROUP NETWORK ARIZONA CHAPTER Arizona United SCIA 901 E. Willetta, Ste. 2306, Phoenix, Arizona, 85006 Phone: (602) 239-5929 Ext. 444 Fax: (602) 239-6268 Contact: Paul Mortenson Website: E-mail: SUPPORT GROUPS East Valley Support Group (COMPASS) Phone: (602) 241-1006 Contact: Pauline Staples E-mail: Flagstaff Support Group Phone: (928) 527-8567 Contact: Al White Grupo de apoyo en Español Gentiva Rehab Without Walls, 7227 N 16th St #107, Phoenix, Arizona Phone: (602) 943-1012 Contact: Diane Prescott Support Group Phone: (623) 209-0311 Contact: Gary Hershey SCI Women Support Group Banner Good Samaritan Hospital, 1111 E McDowell Rd, Phoenix, Arizona, 85006 Phone: (602) 239-3307 Contact: Jill Greenlee, CTRS CALIFORNIA CHAPTER WYNGS, NSCIA 7900 Nelson Rd., Panorama City, California, 91402 Phone: (818) 267-3031 Fax: (818) 267-3095 Contact: Michele Altamirano Website: E-mail: SUPPORT GROUPS Leon S. Peter’s Rehabilitation Center P.O. Box 1232, Fresno, California, 93715 Phone: (559) 459-6000 Ext. 5783 Contact: Ray Greenberg E-mail: CONNECTICUT CHAPTER Connecticut Chapter, NSCIA P.O. Box 400, Wallingford, Connecticut, 6492 Phone: (203) 284-1045 Contact: Jeff Dion Website: E-mail: DISTRICT OF COLUMBIA CHAPTER SCI Network of Metropolitan Washington, NSCIA Plaza West 9, 51 Monroe Street, Rockville, Maryland, 20850 Phone: (301) 424-8335 Fax: (301) 424-8858 Contact: Jesse Parker E-mail: Contact: David Burds Website: E-mail: FLORIDA SUPPORT GROUPS Peer Support Contact 313 Spider Lily Ln, Naples, Florida, 34119 Phone: (239) 353-5894 Contact: Mindy Idaspe E-mail: Sea Pines Rehabilitation Hospital 101 East Florida Ave., Melbourne, Florida, 32901 Phone: (321) 984-4600 Contact: Ellen Lyons-Olski E-mail: Capital Rehabilitation Hospital 1675 Riggins Rd., Tallahassee, Florida, 32308 Phone: (850) 656-4800 Contact: JoAnna Rodgers-Green Florida Rehab. and Sports Medicine 5165 Adanson St., Orlando, Florida, 32804

Phone: (407) 823-2967 Contact: Robin Kohn Email: Phone : (407) 623-1070 Contact: Carl Miller

Fax: (781) 933-0043 Contact: Kevin Gibson Website: E-mail:

HEALTHSOUTH - Support Group 90 Clearwater Largo Rd., Largo, Florida, 33770 Phone: (727) 588-1866 Contact Vicki Yasova

SUPPORT GROUPS BMC Support/Discussion Group 7 West-Harrison Ave Campus, Boston, Massachusetts Phone: (617) 414-5000 Website:

Tampa General Hospital SCI Support Group 2 Columbia Dr., Tampa, Florida, 33601 Phone: (800) 995-8544

Spaulding Support/Discussion Group 125 Nashua Street, Boston, Massachusetts Phone: (857) 222-5123 Contact: Betsy Pillsbury Website:

GEORGIA SUPPORT GROUPS Columbus SCI Support Group Phone: (703) 322-9039 Contact: Ramona Cost E-mail:

Whittier Westborough Support Group 150 Flanders Road, Westborough, Massachusetts Phone: (508) 871-2000 Ext. x2165 Contact: Deb Website:

Central Central GA Rehab Hospital 3351 Northside Dr., Macon, Georgia, 31210 Phone: (800) 491-3550 Ext. 643 Fax: (478) 477-6223 Contact: Kathy Combs ILLINOIS CHAPTER Spinal Cord Injury Association of Illinois 1032 South LaGrange Road, LaGrange, Illinois, 60525 Phone: (708) 352-6223 Fax: (708) 352-9065 Contact: Mercedes Rauen Website: E-mail: INDIANA SUPPORT GROUP Calumet Region Support Group 2109 Cleveland St., Gary, Indiana, 46406 Phone: (219) 944-8037 Contact: Rita Renae Jackson Email: Northwest Indiana SCI Support Group 1052 Joliet Rd, Valparaiso, Indiana, 46385 Phone: (219) 531-0055 Contact: Joe White E-mail: IOWA CHAPTER Spinal Cord Injury Association of Iowa 3936 NW Urbandale Drive, Urbandale, Iowa, 50322 Phone: (515) 270-1522 Contact: Tim Ascherl Phone: (515) 643-0469 Contact: Joyce Ellens E-mail: KENTUCKY CHAPTER Derby City Area Chapter, NSCIA 305 W. Broadway, Louisville, Kentuky, 40202 Phone: (502) 589-6620 Contact: David Allgood, President Website: E-mail: SUPPORT GROUP Friends with Spinal Cord Injuries 3785 hwy 95, Benton, Kentucky, 42025 Phone: (270) 205-5675 Contact: Anndrea Coffman E-mail: MARYLAND SUPPORT GROUP Kernan Hospital SCI Support Group 2200 Kernan Dr., Baltimore, Maryland, 21207 Phone: (410) 448-6307 Contact: Jenny Johnson Website: MASSACHUSETTS CHAPTER Greater Boston Chapter, NSCIA New England Rehabilitation Hospital, Two Rehabilitation Way, Woburn, Massachusetts, 01801 Phone: (781) 933-8666

MISSISSIPPI SUPPORT GROUP Magnolia Coast SCI Support Group 12226 Oaklawn Rd., Biloxi, Mississippi, 39532 Phone: (601) 969-4009 Contact: Michelle Bahret Website: Email: MISSOURI SUPPORT GROUP Southwest Center for Independent Living 2864 S. Nettleson Ave., Springfield, Missouri, 65807 Phone: (417) 886-1188 Contact: Marion Trimble Website: E-mail: NEVADA CHAPTER Nevada Chapter, NSCIA 4708 E. Rochelle Avenue, Las Vegas, Nevada, 89121 Phone: (702) 988-1158 Fax: (702) 951-9637 Contact: Brian "Moose" Hasselman Website: E-mail: NEW HAMPSHIRE CHAPTER New Hampshire Chapter, NSCIA P.O. Box #197, No. Salem, NH 03073 Phone: (603) 216-3920 Fax: (603) 432-1549 Contact: Joan Nelson Website: E-mail: NEW YORK CHAPTERS Greater Rochester Area Chapter, NSCIA P.O. Box 20516, Rochester, NY, 14602 Phone: (585) 275-6097 Contact: Karen Genett E-mail: Phone: (585) 275-6347 Contact: Amy Scaramuzzino E-mail: New York City Chapter, NSCIA Mt. Sinai Dept of Rehab Medicine Attn: James Cesario 1 Gustave L. Levy Place, Box 1240 New York, New York, 10029 Phone: (212) 659-9369 Fax: (212) 348-5901 Contact: James Cesario or John Moynihan Website: E-mail: SUPPORT GROUPS SCI Network of Central New York ARISE, 635 James Street, Syracuse, New York, 13203 Phone: (315) 464-2337 Fax: (315) 464-2305 Contact: Tammy Bartoszek E-mail: Phone: (315) 247-0927 Contact: Maria Froio E-mail:

Long Island Spinal Cord Injury Phone: (631) 221-9255 Contact: Ron Quartararo Website: E-mail:

The Chester Regional Medical Center, Rehabilitation Dept. 1 Medical Park Drive, Chester, South Carolina, 29706 Phone: (803) 482-4389 Contact: Lee Carter E-mail:

NORTH CAROLINA CHAPTER NCSCIA 3701 Wake Forest Rd., Raleigh, North Carolina, 27609 Phone: (919) 350-4172 Contact: Deborah Myers E-mail: Contact: Karen Vasquez E-mail:

Columbia, SC Area Support Group 500 Taylor St, Columbia, South Carolina, 29201 Phone: (803) 252-2198 Contact: Richard Bridges E-mail:

OHIO CHAPTERS Northwest Ohio Chapter, NSCIA 2654 Green Valley Dr, Toledo, Ohio, 43614 Phone: (419) 389-6678 Contact: Debbie Burke E-mail: Phone: (419) 455-0748 Contact: Jim Beckley Website: E-mail:

Orangeburg, SC Area Support Group Phone: (803) 829-2043 Contact: Rebecca Felder E-mail:

Northeast Ohio Chapter, NCSCIA c/o Jeff Schiemann PO Box 934, Chesterland, Ohio 44026 Phone: (440) 813-2783 Contact: Adam Sweeney Phone: (440) 442-5550 Contact: Jeff Schiemann Phone: (800) 325-5605 Contact: Metro Health SUPPORT GROUP Hillside Rehabilitation Hospital 8747 Squires Lane, Warren, Ohio, 44484 Phone: (330) 841-3856 Contact: Rebecca Lebron E-mail: Phone: (330) 889-2158 Contact: Rick Ackerman E-mail: PENNSYLVANIA SUPPORT GROUPS Rehabilitation Hospital of Altoona 2005 Valley View Blvd., Altoona, Pennsylvania, 16602 Phone: (800) 873-4220 Greater Pittsburgh Rehabilitation Hospital 2380 McGinley Rd., Monroeville, Pennsylvania, 15146 Phone: (800) 695-4774 Contact: Kristy Nauman E-mail: Delaware Valley SCIA 2610 Belmont Ave., Philadelphia, Pennsylvania, 19131 Phone: (215) 477-4946 Contact: Bruce McElrath Magee Rehabilitation SCI Resource & Support Group 6 Franklin Plaza, Philadelphia, Pennsylvania, 19102 Phone: (215) 587-3174 Fax: (215) 568-3736 Contact: Marie Protesto Website: Rehabilitation Hospital of York 1850 Normandie Dr., York, Pennsylvania, 17404 Phone: (800) 752-9675 Ext. 720 Phone: (717) 767-6941 Contact: Tammy Derk E-mail: SOUTH CAROLINA CHAPTER NSCIA South Carolina Chapter 500 Taylor Street Suite 403, Columbia, South Carolina, 29201 Phone: (866) 445-5509 Fax: (803) 376-4156 Contact: Debra Matney Website: Email: SUPPORT GROUPS Chester County Chapter Peer Support

Florence, SC Area Support Group Phone: (843) 679-9932 Contact: Ronnie McFadden E-mail:

Rock Hill Area Support Group Phone: (803) 366-5659 Cotact: Bob Alders Email: Spartanburg, SC Area Support Group Phone: (864) 595-1947 Contact: Dot Colson E-mail: TEXAS CHAPTER Rio Grande Chapter Highlands Regional Rehab. Hospital 1395 George Dieter, El Paso, Texas, 79936 Phone: (915) 532-3004 Contact: Sukie Armendariz Contact: Ron Prieto Email: VIRGINIA CHAPTER Old Dominion Chapter, NSCIA P.O. Box 8326 , Richmond, Virginia, 23226 Phone: (804) 726-4990 Contact: Shawn Floyd Website: E-mail: WASHINGTON SUPPORT GROUP SCI Forum University of Washington Medical Center Cafeteria Conference Room B/C 1959 NE Pacific St Seattle, Washington 98195 Phone: (206) 685-3999 Contact: Cynthia Salzman E-mail: WEST VIRGINIA SUPPORT GROUP West Virginia Mountaineer Support Group P.O. Box 1004, Institute, West Virginia, 25112 Phone: (304) 766-4751(W) Fax: (304)766-4849 Contact: Steve Hill E-mail: WISCONSIN CHAPTER NSCIA Southeastern Wisconsin 1545 S. Layton Blvd., Rm. 320, Milwaukee, Wisconsin, 53215 Phone: (414) 384-4022 Fax: (414) 384-7820 Contact: Bill Wright Mary Rostkowski Website: E-mail:

For a current listing of Chapters and Support Groups, visit, or call 800.962.9629. If you cannot find a chapter or support group in your area, why not start your own? Contact the National Office for assistance on our Helpline: 800.962.9629.

July/August 2007


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SCILife, Vol. 4, No. 4  

July/August, 2007. International Forum on Children with Disabilities Brings Focus to Global Issues.

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