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January/February 2007

Vol. 4, No. 1

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

United Nations Treaty Recognizes Disability Rights By Mike Ervin, SCILife Senior Editor


n the United States, people with disabilities do a lot of partying every year around July 26, the anniversary of the signing of the Americans with Disabilities Act. But starting this year, people with disabilities around the world may party with similar zeal around December 13. After five years of negotiations between international organizations representing a broad spectrum of people with disabilities and delegations of member states of the United Nations, the UN General Assembly approved on Deceember13, 2006, the Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities. Convention is just another word for treaty. This is the first international human rights treaty of the 21st Century. Says Thomas Lagerwall, secretary general of Rehabilitation International, a global network of persons with disabilities, government agencies, service providers and advocates, “It

was drafted out of recognition that the rights of hundreds of millions of persons with disabilities were repeatedly overlooked or ignored around the world. This Convention now gives persons with disabilities a strong legal platform on which to advocate for their rights and inclusion in society and a better quality of life.” On the day the convention was ratified, former UN Secretary General Kofi Annan said in a speech, “Throughout the ages, the treatment of people with disabilities has brought out some of the worst aspects of human nature. Too often, those living with disabilities have been seen as objects of embarrassment, and at best, of condescending pity and charity. Societies have even gone out of their way to ensure that persons with disabilities are neither seen nor heard. On paper, they have enjoyed the same rights as others; in real life, they have often been relegated to the margins and denied the opportunities that others take for granted.” Lagerwall says there isn’t a country in the world that doesn’t discriminate against its citizens with disabilities. Indeed, there are

Mark Johnson to Receive 2007 Henry B. Betts Award By Santina Muha, SCILife Staff Writer


ark Johnson, a nationally recognized activist, community organizer and good friend and supporter of National Spinal Cord Injury Association (NSCIA), is the winner of the 2007 Henry B. Betts Award. The prestigious award annually honors an individual whose hard work and dedication have significantly improved the quality of life for people with disabilities. It was created by the Prince Charitable Trusts and the Rehabilitation Institute of Chicago (RIC) in 1989 and in 2001, the American Association of People with Disabilities (AAPD), a

national membership organization promoting political and economic empowerment of Americans with disabilities, joined with the RIC to administer the award. Marcie Roth, NSCIA executive director and CEO, says she couldn’t agree more with the selection of Johnson for this award. “What makes Mark so unique and so uniquely qualified for this esteemed award is his ability to mobilize toward the kind of sweeping changes that really do have a significant impact on real people. Mark shows a kind of unassuming leadership that transcends those with the most power and those who are perceived to have the least. His focus on the Medicaid Community Attendant Services and Supports Act (MiCASSA) and the rights of people with disabilities and his leadership

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myriad examples. Mental Disability Rights International has documented many instances of horrifying treatment of people in mental institutions. In Romania, their investigators found children with disabilities abandoned and literally starving in adult psychiatric facilities. In India, some people with disabilities have not had the same rights as others to own or transact private property. In 2004, amendments to the marriage code in Albania were proposed to prohibit anyone with a "profound” disability, including develop-

mental disabilities, schizophrenia or HIV/AIDS, from getting married. A doctor who recently escaped North Korea told the London Times that babies with disabilities are routinely killed there because of dictator Kim Jong II's obsession with ridding the country of “physical defects.” In developing countries, people with disabilities can’t get equipment as basic as wheelchairs. Even in the United States, there are still thousands off people with disabilities who are institutionalized against their will. Continued on page 11

in implementing the LC vs. Olmstead Supreme Court decision and other civil rights laws have helped to move a nation toward real opportunities for community living.” Johnson is director of advocacy at the Shepherd Center in Atlanta, Georgia. He was spinal cord injured in 1971 at the age of 19. Near the end of his sophomore year in college, during a study break, Johnson was injured at the C5/C6 level after diving into a local quarry. At the time of his accident, Johnson remembers, “My faith, family and friends got me through that period of fear. My father was always very creative. For example, he started bringing me a quote each week. The one that stuck with me became my mantra – ‘I’m not afraid of tomorrow for I’ve seen yesterday and I love today.’” Johnson also credits his mother for consistently showing him how to give back to the community. “Even now my mom still Continued on page 6

Mak Johnson.


January/February 2007

January/February 2007

guest editorial

Elections Bring Opportunity and Challenge



BOARD OF DIRECTORS Executive Committee PRESIDENT: Harley Thomas IMMEDIATE PAST PRESIDENT: Carmen Jones CHAIR, EXECUTIVE COMMITTEE: Pat Maher VICE-PRESIDENT FOR MEMBERSHIP: John Fioriti VICE-PRESIDENT FOR CHAPTERS: Deb Myers VICE-PRESIDENT FOR DEVELOPMENT: Milita Dolan VICE-PRESIDENT FOR COMMUNICATIONS: Cheryl Vines SECRETARY/TREASURER: Janeen Earwood BUSINESS ADVISORY COMMITTEE LIAISON: Tari Susan Hartman-Squire CEO/EXECUTIVE DIRECTOR: Marcie Roth Directors Pamela Ballard, MD Tapan Banerjee, Ph.D. Teresa Fausti Blatt Tom Fjerstad David Boninger, Ph.D. Jayne Kleinman Paul Mortensen Christine N. Sang, M.D., M.P.H Gary J. Viscio, Esq. Suzanne Wierbinski General Counsel Leonard Zandrow, Esquire

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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 Andrew Imparato, President & CEO, American Association of People with Disabilities


ast November’s national elections had a big impact on the makeup and leadership of the Congress, and have invited speculation about what this all means for children and adults with disabilities and our families. Overall, I think the democratic majorities in the House and Senate will mean less time and energy spent trying to protect entitlement programs like Medicaid and Social Security from draconian cuts. But I also believe that it will still be difficult to pass key disability community priorities like the Medicaid Community Attendant Services and Supports Act (MiCASSA), federal legislaAndy Imparato. Photo by Tom Olin. tion requiring visitability features for new residential housing or the Americans with Disabilities Act (ADA) Restoration Act. On the positive side, many of the disability community’s democratic champions now have significant clout. With Senator Edward Kennedy (Massachusetts) chairing the Health, Education, Labor and Pensions Committee, it will be easier to get hearings focused on what has been happening with the ADA, Individuals with Disabilities Education Act and other key disability rights laws. With ADA champion Steny Hoyer (Maryland) now serving as the House Majority Leader, we have a key ally in the second most powerful role in the U.S. House of Representatives. With Congressman Barney Frank (Massachusetts) and Senator Chris Dodd (Connecticut) taking over as chair of the committees that oversee housing policy, we can expect greater support for affordable housing policies and increased attention to the housing crisis facing people with disabilities all over the U.S. Both Speaker Nancy Pelosi (California) and Senate Majority Leader Harry Reid (Nevada) have been good about reaching out to the disability community in their leadership roles when the democrats were in the minority and there is no reason to believe that won’t continue. Under the chairmanship of Patrick Leahy (Vermont), the Senate Judiciary Committee will likely give increased scrutiny to nominees for federal judgeships who have problematic track records in the area of disability rights and civil rights. The recent withdrawal of the nomination of Terrence Boyle to the Fourth Circuit Court of Appeals was a welcome sign that the White House recognizes the need to make more of an effort to

put forward nominees whose views on civil rights are closer to the American mainstream. On the negative side, I am sorry to have lost the leadership of the retiring Congressman Major Owens (New York) and Senator Jim Jeffords (Rhode Island), two of the strongest disability champions in the Congress. I was also sorry to lose Senator Mike DeWine (Ohio), a moderate republican who promoted disability issues on both the Health, Education, Labor and Pensions Committee and the Judiciary Committee in the Senate. Senator DeWine’s questions at the confirmation hearings for Judges Roberts and Alito were among the best questions touching on the interpretation of disability rights laws that were posed to the nominees. The combination of Senator Dodd giving up his leadership role on the Senate Committee on Rules and Administration and House Administration Chairman Bob Ney (R-Ohio) losing his reelection bid means that two of the stronger voices for accessible voting will not be as well-positioned to protect the accessibility requirements in the Help America Vote Act from a likely democratic-led effort to water down those requirements in the name of security. With Charles Rangel (D-New York) chairing the House Ways and Means Committee and Max Baucus (D-Montana) chairing the Senate Finance Committee, there may be opportunities to revisit the Medicare prescription drug legislation and plug some of the holes that have created hardships for many disabled Medicare beneficiaries as they reach the “donut hole” and incur significant out-of-pocket costs for their medications. There may also be opportunities under these chairmen to have greater oversight over how the Centers for Medicare and

Medicaid Services are addressing the needs of beneficiaries with disabilities in light of changes in wheelchair reimbursement policies and out-dated “homebound” restrictions on coverage in the Medicare program. Although some of the leadership changes will likely raise the profile of some of the disability community’s legislative priorities, the closely divided Senate and the potential of a presidential veto will mean that major pieces of legislation will need broad bipartisan support to pass. House republicans like Jim Ramstad (Minnesota), Pete Sessions (Texas), John Shimkus (Illinois), and Jim Sensenbrenner (Wisconsin) and Senate republicans like John McCain (Arizona), Orrin Hatch (Utah), Gordon Smith (Oregon), Charles Grassley (Iowa), Mike Enzi (Wyoming), Arlen Specter (Pennsylvania) and Sam Brownback (Kansas) can still make a big impact. Another factor that cannot be overlooked is the fact that this Congress will conduct its business during the run-up to the 2008 presidential primaries and general election. At least three members of Congress who have shown a strong interest in disability issues (Senators McCain, Dodd and Brownback) appear to be running for president. This creates an opportunity for disability advocates to get some of our top priorities addressed in presidential campaign platforms, but it also means that some of our issues can fall victim to partisan presidential politics. Disability advocates will still need to cultivate bipartisan champions and will still need to fight to get attention to our priorities in a Congress that has the potential to be preoccupied with Iraq and the 2008 presidential election. If we are unified in our message and priorities, leaders in both parties are more likely to listen.

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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January/February 2007


from the executive director

Opportunity is Knocking! By Marcie Roth, Executive Director and CEO, NSCIA


hile the rest of the country has been buzzing over the changes in leadership at the opening of the 110th Congress, disability leaders have had our eyes on specific opportunities for improving the lives of our constituents. One evening after the election but before the holidays, I attended a party and was excited to have the opportunity to speak with the new Speaker of the House, Nancy Pelosi. She greeted me warmly and upon hearing that I am with the National Spinal Cord Injury Association, launched into a lively statement about the rights of people with disabilities! Speaker Pelosi began by telling me that because she is from the Bay Area in California, home of

the birth of the independent living movement, she has been well educated on the history and progress of the disability rights movement. She spoke of her plans to address stem cell research in her first 100 hours as this country’s first female Speaker. But then she went on to talk at length about the need for the US Department of Justice to have more resources for enforcing the Americans with Disabilities Act and her plan to focus on this. She also agreed with my comments about the need to address disincentives to employment and access to rehabilitation; durable medical equipment; affordable, accessible housing; personal assistance and, of course, health care. As she spoke, I was flanked by American Association of People with Disabilities board member and disability leader, Teddy Kennedy Jr. and his brother, Rep. Patrick Kennedy (RI), who is also known for his leadership on our issues.(Rep. Kennedy is joined in the Rhode Island congressional delegation by NSCIA’s SCI Hall of Fame inductee, Rep. James Langevin, who is the first person with a spinal cord injury to be elected to Congress.) All three of us were thrilled by the depth and breadth of Pelosi’s knowledge of our issues and the passion in her voice as she spoke. Support from the Speaker of the House is key to the movement of any legislation from introduction to passage. I am gratified by my conversation with Leader Pelosi. She seems to understand that there is a need to hold stem cell research and other promising research, ac-

cess to health care and protection of the civil rights of people with disabilities as priorities under her watch. This is only one of many signs that the stars are aligning for real progress on a public policy agenda that favors maximizing quality of life and opportunities for NSCIA’s constituents. Across both the Senate and the House, our issues have real champions and enough recognition of their value to rise to the top of what will surely be a congressional cacophony of competing interests during the 110th Congress. So, should we kick back for the next two years? NOT A CHANCE! What is needed from us is laser focus on our issues and broad and visible support from a coalition with shared interests. In the SCI/D community, we now have the burgeoning SCI Leaders Coalition, launched at the 2006 SCI Summit. This coalition is meeting regularly, setting priorities, advancing shared public policy initiatives and best of all, working collaboratively! We need NSCIA’s members to step up and assume leadership too. Get more involved with your NSCIA chapter. You don’t have one? Call us and we’ll help you start one! Join a support group or start one. Make a donation or introduce us to someone who can help us fund our work. Join a committee. Write an article for SCILife or help us link to a product or service via our website. If you are ready to be a bigger part of the solution, the time couldn’t be better. We need you and we know you need us. As Mahatma Gandhi said, “Be the change you wish to see.” Jump in!

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


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Independent and Assisted Living Products & Services Professional & Consumer Workshops & Seminars Hundreds of Companies & Equipment Demonstrations Non-Profit and Community Organizations Incredibly Motivational People and Leaders of All Ages San Antonio, TX January 26-28, 2007

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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

January/February 2007


NSCIA Welcomes New BAC Co-Chairs ByTari Hartman Squire, BAC Liaison to the NSCIA Board of Directors


SCIA’s new Business Advisory Committee (BAC) co-chairs, Mary Brooner, senior director of government affairs for Motorola, and Kevin Bradley, director of diversity initiatives for McDonald's, are excited to work with NSCIA this coming year. Both are champions of accessibility as well as employment of and marketing to people with disabilities. Bradley chaired the employer subcommittee of the former President's Committee on Employment of People with Disabilities. It was his idea three years ago for NSCIA to create a Business Advisory Committee (BAC) fashioned after the one he started for the Organization of Chinese Americans. Bradley masterminded the use of a Paralympic athlete on the Olympics'promotional cups, bags and tray liners. This spring, McDonald's is one of the lead partners of the Individuals with Disabilities Education Act (IDEA) celebration — along with NSCIA, other disability organizations and government partners — to be

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held at the Smithsonian National Air and Space Museum. Bradley motivated the US Paralympic Committee to provide athletes with disabilities as role models for 200 local Washington, DC students with disabilities who will attend. This past summer, Bradley co-presented with Tari Hartman Squire at two multicultural marketing conferences to illuminate disability-inclusive diversity marketing. Bradley believes "NSCIA is a great bridge building organization for the business and disability communities. NSCIA brings everyone to the table to learn, create and implement. The creative energy is terrific and the focus is on positive results." Brooner has been a champion of accessible and usable telecommunications for people with a variety of disabilities. She encouraged Motorola to be involved in several significant disability community activities that support marketing with and employment of people with disabilities, including NSCIA, Hearing Loss Association of America, and Career Opportunities for Students with Disabilities (COSD) – which included hosting the 2004 COSD conference at Motorola’s headquarters. Brooner serves on the US Access Board's Telecommunications and Electronic and Information Technology Advisory Committee (TEITAC) along with past BAC co-chair Susan Mazrui of Cingular Wireless, BAC member Michael Takemura of HP, and NSCIA president Harley Thomas, who represents Paralyzed Veterans of America. Inside Motorola, Brooner co-chairs the disabilities business council, an affinity group of employees with disabilities and

their interested colleagues. Brooner states, "I strongly believe that there has to be a great relationship between the disability organizations and the business community. The stronger that bond, the better communication we have and the sooner we can bridge gaps in areas like employment and marketing. The NSCIA has provided that venue." NSCIA welcomes Bradley and Brooner and extends thanks to former BAC chair Mazrui, director of federal regulatory affairs for Cingular Wireless, for leadership in chairing the BAC for several years. Susan is a new mom (baby Nicole was born in September 2006) in addition to her very full time career. BAC members in the news include: Ron Pettit, formerly of Northwest Airlines, who developed NWA's Customer Advisory Board's brochure for customers with disabilities that features NSCIA's Pat Maher on the cover, is now Access Manager for Royal Caribbean International and Celebrity Cruises. Ron reports, "Royal Caribbean International and Celebrity Cruises' Access Department recently extended its hours to 9 a.m. to 7 p.m. ET, Monday through Friday, making it easier to do business by providing more opportunities to contact us." The Access Department can be reached at 800-7225472 ext #34492 (phone), 305-539-6666 (fax) or e-mail to The Access Department coordinates and ensures accommodations are provided and delivered for guests with disabilities for both Royal Caribbean International and Celebrity Cruises.


Michael Caron, VP of AvisBudget, along with former SCILife editor Gary Karp and Tari Hartman Squire presented best practices on marketing with the disability community at the recent "Universal Access to Travel and Tourism" conference in Baltimore. Thanks to several BAC members who sponsored and participated in the 2006 Spinal Cord Injury (SCI) Hall of Fame and SCI Summit: Platinum Beth Goldsmith of Craig H. Neilsen Foundation and Karen Quammen of Medtronic Gold Mary Brooner of Motorola Silver Susan Mazrui of Cingular Wireless, whose CEO, Stan Sigman, was inducted into the SCI Hall of Fame in the category of Corporate Executive, Mylene Padolina of Microsoft and Tierney Saccavino of Acorda Therapeutics Bronze Marilyn Hamilton of Quickie/Sunrise (SCI Hall of Fame Inductee in 2005) and Rayna Aylward of Mitsubishi Electric America Foundation Ron Cohen and Tierney Saccavino of Acorda Therapeutics conducted the research breakout session at the SCI summit. The NSCIA Board and staff have great appreciation for the continuing leadership and contributions of the BAC.


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January/February 2007

Mark Johnson... Continued from page 1

assists people in the community who are younger than she is!” Since then, Johnson’s view on living with a disability has evolved. He explains how, at the time of his injury, his attitude about disability was based on images. “My image was of an elderly woman sitting in a wheelchair with a blanket on her lap.” Johnson’s images of disability have since matured. “Now I have seen people who are successful, such as business owners with spinal cord injuries.” The positive change in his point of view coincided with the positive changes that have occurred throughout the past few decades of SCI movements. Johnson recalls that 36 years ago there was very little access and almost no support systems. “The expectations of the current population have changed. Now people protest if the lift on a bus does not work as it should. Back then we were protesting because there were no lifts on busses!” Johnson remembers the moment where he knew that fighting for the rights of people with disabilities would be his mission in life. “In 1981, 1 when I moved to Denver, Colorado, I met Wade Blank, who became my mentor. He got me involved with transit issues and that’s when I began to take direct actions.” He realized that, “We are the experts. We have the solutions. We are not the problem. The people who are the most impacted have to get involved first. We are in a society where people are quick to claim the label ‘victim’ rather than ‘agent of change.’ I feel like I have a responsibility to help make that change.” Johnson has been active in ADAPT, the organization Blank founded, since then. He holds a Masters in Education from the University of North Carolina at Charlotte and worked as a counselor at Charlotte Rehabilitation Hospital. But he is best known for his work at the Shepherd Center. Johnson assures patients and people that come through the center that “Life goes on.

Do whatever it takes. When people get frustrated I tell them, ‘Well, there are alternatives. You can sit in a closet or turn to drugs and never amount to anything.’ Those alternatives don’t appeal to me.” Johnson has also been a strong presence in NSCIA since the 1970s. He co-chaired the first NSCIA Summit and SCI Hall of Fame in 2005 and is a member of the SCI Leaders group created at the 2006 NSCIA Summit to bring together leaders from SCI related organizations. Says Roth, “Mark and I have worked together on many projects over the years. When I came to him to talk about my dreams for a summit on SCI he immediately stepped up to the plate and assumed a leadership role that has not only impacted NSCIA but has moved us all to the kinds of collaborative partnerships that will finally lead to results.” Besides accepting his award March 7 at the AAPD Leadership Gala in Washington, DC, Johnson looks forward to celebrating the college graduation of his 22-year-old daughter in August. (He refers to her as his proudest accomplishment.) He also plans to focus more on his own physical health, as well as expand his knowledge of social media. “I want to figure out even more ways to build identities, build communities and create change through avenues such as ‘YouTube’ and other internet sites.” Looking even further down the road, Johnson is optimistic about SCI advancements, though he would like to see more collaboration between groups. He says, “I really like what this SCI Leaders group is doing and the fact that groups that have a history of working on SCI related issues are working together.” He also hopes to see better treatment for aging with SCI, better rehabilitation programs and easier travel options. Johnson thinks it’s “cool” that he was recognized with the Betts award. “I’m more into participating than leading. I just try to get people involved. Some of the past recipients of this award have been great leaders. Those were for the people in the suites. This one is for the people in the streets.”

Who is Henry Betts? Henry B. Betts, an internationally recognized specialist and pioneer in rehabilitation and physical medicine. After serving as the personal physician for Joseph Kennedy, father of President John F. Kennedy, Betts went on to become Medical Director, President and CEO of the Rehabilitation Institute of Chicago (RIC). Betts recently received The Frank H. Krusen Award, the highest honor of the American Academy of Physical Medicine and Rehabilitation (AAPMR). According to the AAPMR, recipients of this award are selected for their outstanding and unique contributions to the specialty of Physical Medicine and Rehabilitation in the areas of patient care, research, education, literary contributions, community service and involvement in Academy activities. Dr. Betts was also awarded the Equip for Equality 2006 Lifetime Achievement Award.

Mark JohnsonÊs New YearÊs Resolutions 1. Honor our heroes and support emerging leaders, go to: AAPD Gala, , SCI Hall of Fame, , New Mobility, 2. Support ADAPT's National Fun Run, April 29th, Upper Senate Park, DC, sponsorship and Program Ad forms available at the end of January, go to 3. Celebrate/Share articles like Harriett McBryde Johnson's Op-Ed in the New York Times, Alas for Tiny Tim, He Became a Christmas Cliché, go to, click on last Op-Ed and documentaries like Darius Goes West, go to 4. Expand the utilization of Social Media 5. Support the Road to Freedom Tour,, description at 6. Support the Disability News & Views Radio Tour, go to 7. Support the reintroduction/passage of MICASSA, 10th anniversary since 1st edition introduced in 1997, press release at 8. Support the collaboration between CRPF, NSCIA, PVA, USA, state SCI Trust Funds, etc. 9. Celebrate NCIL's 25th Anniversary, go to 10. Begin planning for ADAPT's 25th Anniversary in 2008 11. Begin planning for the Olmstead Decision's 10th Anniversary in 2009 ( 12. Identify/Promote mutually beneficial opportunities for advocates from aging, for example, universal design, aging in place, HCBS, ADRCs (, etc. 13. Maintain HAPPY NEW YEAR!

January/February 2007

The Ethics of Growth Attenuation By Len Zandrow, NSCIA General Counsel


controversy has developed recently over the so-called “Ashley Treatment,” a decision by parents in Seattle to initiate a series of growth-stunting medical procedures so their nine-year-old daughter will have a child’s body for the rest of her life. While Ashley does not specifically exhibit spinal cord injury or disease, her case has raised broad ethical questions within the disability community and elsewhere.

Background Shortly after birth, Ashley began to show signs of severe brain damage, including hypotonia, feeding difficulties and neurological delays. She was ultimately diagnosed with a rare brain condition known as static encephalopathy. Her cognitive development is described as similar to that of a three-month-old infant. At the age of six, she could not sit up, ambulate or use language and the best medical consensus was that she would not likely improve either cognitively or neurologically.

Ashley’s parents have cared for their daughter in their home since her birth. She has two typically developing siblings and is reportedly an integral and much loved member of her family. With the onset of early puberty, Ashley’s parents became increasingly concerned about her future. She experienced a growth spurt, advancing in length from the 50th to the 75th percentile during one sixmonth period. Her parents feared that their daughter’s continued growth would eventually make it impossible for them to care for her at home despite their strong desire to do so. After consulting doctors at Seattle’s Children’s Hospital, Ashley’s parents authorized a series of growth-stunting treatments. Beginning at age 6, she was given high doses of estrogen for two years. As a result, her growth plates were closed and her prospective height was reduced by about 13 inches to 4 feet 5 inches. Doctors also removed her uterus. This was described as necessary to prevent potential menstrual discomfort or pregnancy in case of rape. In addition, it was reported that surgeons removed her breast buds because of a family history of cancer and fibrocystic disease. Not having breasts would also make the harness straps that hold her upright more comfortable. In October, 2006, her doctors first published an article about her treatment in the Archives of Pediatrics and Adolescent Medicine, producing a firestorm of debate.

Ethical and Legal Considerations In their article, Ashley’s doctors have identified the target population for such treatments as children “with profound cognitive and neurological impairment, who are nonambulatory and wholly dependent on others for every need.” See 160 Archives of Ped. and

Adoles. Med. 1013, 1016 (Oct. 2006). This target population is clearly not limited to individuals with Ashley’s rare, static encephalopathy, but also includes children with spinal cord injury or disease. The interdisciplinary medical group which approved Ashley’s growth attenuation therapy at the hospital essentially reduced its ethical decision to two questions: 1) Would Ashley benefit from the proposed procedures, and 2) Would she be harmed by these procedures? See 160 Archives of Ped. and Adoles. Med. at 1016. These questions are relatively simple, but the answers are complex and problematic. Few involved in the current debate doubts the intense love and devotion of Ashley’s parents. All support their efforts to provide at home care for their daughter. But good will and kind intentions have often had disastrous consequences for people with disabilities. In criticizing the “Ashley Treatment,” organizations like ADAPT and Not Dead Yet have invoked memories of past abuses, like the forced sterilization of people with cognitive disabilities in the late 19th and early 20th centuries, as just one example of misguided benevolence. As a legal matter, the authority to perform growth attenuation or any other novel treatments is based on informed consent. The three fundamental requirements for a valid informed consent are disclosure, understanding and voluntariness. When the prospective patient is mentally incompetent, family members and/or guardians are instead required to make a substituted judgment based on the patient’s perceived choices and interests. In Ashley’s case, concerns abound about whether 1) the treatments that she has under-

The Products of Therapeutic Alliances

gone have been sufficiently tested, 2) her brain development has truly reached an end result and further improvement is unlikely and 3) the quality of life of her caregivers may have subtly influenced the decision regarding Ashley’s quality of life. Her treatments have led ethicists to question 1) the degree to which personal and physical autonomy should be regarded as sacrosanct, 2) whether irreversible choices should be exercised at such a relatively young age, especially if not compelled by medical necessity and 3) whether turning people into permanent children denies them certain therapeutic benefits from being seen as adults. Disability advocates claim that Ashley’s treatment demonstrates that societal support systems for people with disabilities are inadequate and should be modified, rather than persons’ individual bodies. They fear the precedent created by Ashley’s case and the potential for abuse in the future. Many of these concerns are interwoven with the issue of informed consent. Another key legal question is whether insurance companies and government agencies responsible for reimbursing health costs will regard such novel procedures as being medically necessary or as being “experimental” or “investigative” and thus not covered under group health policies, potentially having a negative effect on reimbursement for other non-controversial treatment. See, for example, Washington v. Winn-Dixie of Louisiana, Inc., 736 F. Supp. 1418 (E. D. La. 1990) (quadriplegic’s hyperbaric oxygen therapy was experimental and not covered under medical insurance policy). Ashley’s care challenges us all to evaluate the ethics of growth attenuation and to establish new legal standards to balance the important public policies involved.

Therapeutic Alliances Inc. 333 North Broad Street Fairborn, Ohio 45324 USA


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ERGYS State-of-the-art functional electrical stimulation (FES) ergometry to give those with SCI the healthful benefits of using their leg muscles again. ERGYS®, REGYS, SpectraSTIM®, NeuroEDUCATOR®, and The Power of Your Muscles are trademarks of Therapeutic Alliances Inc. Parastep® is a trademark of Sigmedics Inc. ©2005 Therapeutic Alliances Inc.


January/February 2007

In Motion: Just About Anyone Can Ski 4 …3…2…1! HAPPY NEW YEAR! Now put down that piece of cake, pick up a celery stick and start exercising! Since the birth of the New Year’s resolution, one of the most common goals has been to stay in shape, get more exercise and eat better. Deciding to get healthy is a commitment often lost sometime around the third week in January. When a person with a spinal cord injury makes this resolution, what

can he or she do to exercise and get in shape? And how can this resolution be sustained all year long? When researching adaptive sports, one will find a plethora of options. Are you a winter person or a summer person? Do you like to play in the water or prefer to stay on land? Are you a team player or believe in “every man for himself?” Answering these questions will help narrow your search for the adaptive sport

that best fits your lifestyle. Throughout this year, you will find articles within SCILife that will help you stay on track with your goals. From skiing to surfing to basketball to football, almost any sport can be adapted (that’s right, even football!). Why not try a different sport every month? Or just stick with the sport you love the most and excel as a player. Whatever you prefer, the possibilities are vast

Open Outdoors


t’s the most amazing opportunity to find out how able I am. I feel capable, strong and free when I am on the mountain.” – 2nd year mono-skier. Skiing has the unbeatable sensation of sliding on snow with the wind and sun on your face. For people with spinal cord injuries, the ski equipment may be a little different; but the experience is very much the same. Alpine and Nordic skiing can be adapted in multiple ways, making it accessible to anyone. According to the United States Department of Agriculture Office of Civil Rights Accessibility Guidebook for Ski Areas Operating on Public Lands, all ski resorts are required to provide equal opportunities for people with disabilities to participate in programs and services, as mandated by the Americans with Disabilities Act. As a result, adaptive skiing programs have popped up across the country. There are at least seven programs in Colorado alone. The Breckenridge Outdoor Education Center’s (BOEC) Adaptive Ski Program, now in its 30th year, provides roughly 3,000 lessons each season to people with disabilities across a broad spectrum. People with spinal cord injuries or spinal cord diseases took more than 600 lessons in the 2005-2006 season with the BOEC. Many variables account for determining what specific type of adaptive equipment an individual will need. Some considerations include athleticism, time commitment and level of functioning.

The Mono-Ski A mono-ski is a molded bucket seat on top of a metal frame, with a suspension system attached to a single ski. The feet sit on a platform and each hand holds an outrigger. Outriggers are short, modified Canadian crutches (metal crutches with arm cuffs) with small skis attached at the base. Mono-skiers use the outriggers for balance and to aid in turning. With commitment, individuals can work towards balance and strength in the ski. Eventually, mono-skiers can achieve a dynamic and independent skiing experience. Mono-skiers can ski steep black runs, race alpine events and even ski the high alpine bowls and terrain parks.

THIS ISSUE’S SPORT: Adaptive Skiing Santina Muha, SCILife Staff Writer

Additional Resources Amputee Coalition of America, inMotion Publication Directory of Adaptive Skiing Programs 900 East Hill Avenue, Suite 285, Knoxville, Tennessee 37915 1-888-267-5669

Skiing with a Spinal Cord Injury By Gene Gamber, Emily Lawrence, & Jennifer Sloan of the Breckenridge Outdoor Education Center’s Adaptive Ski Program

and it’s about time you kept a New Year’s resolution, isn’t it?!

The Bi-Ski

Breckenridge Outdoor Education Center, Adaptive Ski Program 524 Wellington Road, Breckenridge, CO 80424 1-800-383-2632

Similar to a mono-ski, bi-skis are lower to the ground and have a base of two articulating skis. This provides more stability and balance. Bi-skis are highly versatile and can meet the needs of a wide-range of ability levels. Some bi-skiers require the assistance of a tether, a length of webbing that clips to the back of the bi-ski and is held by the instructor. The tether is used to “enhance or correct edging… and balancing movements of the skier, as well as to control speed and stop the skier if necessary,” explains the Professional Ski Instructors of America Education Foundation Adaptive Manual. Because of the biskis lower center of mass and lack of load-assist mechanisms, some bi-skiers will not be able to load and unload from the chairlift independently.

Professional Ski Instructors of America Education Foundation 133 South Van Gordon Street, Ste. 101, Lakewood, CO 80228 303-987-9390 Extreme Adaptive Sports 504 Brett Place, South Plainfield, NJ 07080

The Dual Ski The dual-ski (also called a twin-ski), one of the newer designs of sit-down ski equipment, bridges the gap between the mono-ski and the bi-ski. With a suspension system the dual-ski looks and performs very similar to a mono-ski. Yet, the dual-ski has an articulating base mounted on two-skis, giving it the balance and versatility of a bi-ski. Although increasing in popularity, be aware that not all adaptive skiing programs may be able to offer lessons with a dual-ski.

Additional Options For people with low level spinal cord injuries, or with incomplete injuries, there is the possibility of stand-up skiing. Outriggers, similar to the ones used in mono/bi skiing only longer, can be used in place of ski poles. Called four-tracking (because the skier makes four tracks in the snow), it allows people to ski standing for longer periods of time. Adaptive Nordic skis are also available for those who crave solitude and a healthy workout. Lightweight and minimalist in design, Nordic sit-down ski equipment is self-propelled by ski poles. An increasing number of adaptive ski programs are providing crosscountry experiences. Ski resorts and adaptive skiing programs are continually expanding opportunities for people with spinal cord injuries. In addition, technology and innovation are constantly improving adaptive equipment. This article is in no way a comprehensive guide. For more information and to view pictures of the adaptive equipment, see the additional resources below. As one of the BOEC’s first-time mono-ski students recently proclaimed, “Go, you’ve got to try it!”

Matt Feeney, Ski School Director, Program Director and Co-Founder of Adaptive Adventures mono-skiing.

A Mono-Skier’s Tale By Matt Feeney Adaptive Adventures


have always had a passion for the outdoors and skiing is no exception. I started skiing at a young age so after surviving a spinal cord injury in 1988, it made sense that skiing would be the first challenge for me as a disabled athlete. I relearned how to ski eight months after my accident and never looked back. Skiing for me is very liberating. Using a wheelchair every day can be a bit daunting at times...dealing with stairs, narrow doorways and other physical barriers.

When I'm in a mono-ski, these physical barriers only exist in the mind and I'm free to go anywhere and explore new and more challenging terrain. Skiing also allows me to interact more with friends and family. Advances in technology and better adaptive equipment have leveled the playing field and enabled me to not only be more independent, but ski at a level that was not possible 20 years ago. I am now able to ski with less assistance and skiing has become more of a social activity. There are many great adaptive skiing programs around the country. Most ski areas or resorts offer adaptive ski lessons through their ski school or adaptive programs. You can access the Information Resource Center at Adaptive Adventures' website ( for contact information for adaptive ski schools around the country.

January/February 2007


chapter news Southeastern Wisconsin Chapter Helps Lithuania Grow By Dr. William P. Waring III MD MS


n 1989, Lithuania was a dismal place to live for people with disabilities. People with new spinal cord injuries were sent home from the hospital without wheelchairs or basic bowel and bladder care supplies. All apartment buildings had stairs and there were no dedicated physicians, nurses or therapists who treated people with disabilities. I first visited Lithuania that year as part of a delegation sponsored by the Soviet Committee of the Physicians for the Prevention of Nuclear War. Besides 10 medical students, Greg Lais, Director of Wilderness Inquiry, a nonprofit organization based in Minneapolis, Minnesota that brings people with and without disabilities on wilderness adventures, was invited to join the delegation along with three Americans with disabilities. While there, we met Lithuanian medical students and Lithuanians with disabilities. We also went on a Wilderness Inquiry trip in the Lithuanian National Park and attended the first public disability rally held in Soviet Lithuania. Lithuania was part of the Soviet Union in 1989. In 1990, it became the first republic to secede. During Soviet times their government avoided publicizing any “problem areas� such as disabilities that would somehow shatter the myth of a “‘workers’ paradise.� In many ways disability in the Soviet Union was out of sight and out of mind. When we returned to America, some colleagues of mine and I discussed how we could help this well educated country leap frog ahead with their programs and services for Lithuanians with disabilities. We invited a Lithuanian delegation to spend three weeks in Michigan and Ohio in 1990. The delegation included two Lithuanians with disabilities and two physicians. We had them visit Americans with disabilities in their home, at work and at play. They toured centers for independent living in Ann Arbor and Toledo. The climax of their visit was a pig roast organized by Dan Wilkins, president of the Northwest Ohio Chapter of NSCIA, attended by over 100 chapter members. The chief Lithuanian physician said he never saw so many “happy people with disabilities� before. He was amazed Wilkins could drive a car! Wilkins was a member of our American delegation that returned to Lithuania in 1991.One of the Lithuanian physicians who visited America in 1990 wrote to me later saying that the best thing we did in 1991 was to bring Wilkins and the other Americans with disabilities to Lithuania. After our visit, the Soviet Union officially disbanded and Lithuania became a recognized independent country. That same year Lithuania passed its own disability law similar to our Americans with Disabilities Act. These exchanges continued throughout the next four years. When I went to Lithuania in 1996, instead of the apathy we saw from the government in earlier days, I was now asked to help create more rehabilitation centers and teach more rehabilitation professionals. Lithuanians with disabilities were quite actively lobbying the government for change and were successful in getting a number of small funding sources for adapted transportation, housing and work opportunities. Continued on page 12

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January/February 2007

United Natons... Continued from page 1

The Convention also notes that “the majority of persons with disabilities live in conditions of poverty”, so a far-reaching document was necessary. Nerina Cevra, Rights Associate at Landmine Survivors Network, says, “This is a very comprehensive Convention, as it does not only address nondiscrimination, but elaborates on all civil, political, social, economic and cultural rights.” The Convention calls upon all nations that sign on to it to “take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities.” Here are some examples of what that entails: ● Article 9 declares the right to have “access, on an equal basis with others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and services open or provided to the public, both in urban and in rural areas.” ● Article 14 says people with disabilities must be able “to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit.” ● Article 19 says “Persons with disabilities (must) have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.” This includes having “access to a range of inhome, residential and other community support services, including personal assistance.” ● Article 20 requires “facilitating access to quality mobility aids, devices, assistive technologies…at affordable cost.” ● Article 23 declares the rights of people with disabilities to “decide freely and responsibly on the number and spacing of their children” and to “retain their fertility.” ● Article 25 prohibits “discrimination in the provision of health insurance, and life insurance.” ● Article 29 protects the right to “vote by secret ballot.” Member states can begin signing on March 30. Once 20 have done so, the Convention goes into effect. But the US delegation from the UN has stated throughout the process that the US will not be signing on. The position of the Bush administration, Lagerwall says, is that the ADA is so effective that further rights protections are unnecessary. Cevra says “The ADA is the world's most progressive national legislation elaborating on rights of persons with disabilities. However, the Convention is broader and not signing it will mean that those provisions will not apply to Americans. The US is also the largest dispenser of international aid, and US signature would open up another, very important avenue for pressuring governments of foreign countries to implement the Convention, by conditioning aid receipt on it.” But even when a government does sign on to the Convention, how effective can the UN be in enforcing its provisions?

“This is one of the main shortcomings of international law generally,” says Cevra. “There are no enforcement provisions per se, as there is no supra-national body in the world that can enforce the implementation of the Convention.” The Convention does create the Committee on the Rights of Persons with Disabilities. This body will consist of between 12 and 18 disability “experts” elected by UN member states for up to two four-year terms. Countries adopting the Convention will have to submit progress reports to the committee detailing how they are improving standards of living for their citizens with disabilities. Lagerwall thinks this will create a transparency that will lead to more moral pressure. “Countries that do not comply will have to explain why. Not complying gives a bad image and countries may feel pressure from other countries to improve the protection of rights of persons with disabilities.” Cevra says, “Moral pressure is not the only incentive to implement. In today's interconnected, globalized, flat world, there are ways to pressure countries into complying, for example, by conditioning development funds on implementation.” But all politicians are unwise to underestimate the power of public opinion. The much higher profile the convention and the process that brought it about have given to the human right of people with disabilities in itself reduces the isolation in which the worst abuses occur. It exponentially improves the communication between the international organizations through which we speak for ourselves. And it presents us with an unprecedented stage from which to tell our stories to the world — stories that are often too compelling to ignore.

KOFI ANNAN’S SPEECH For most people in this room, today marks an important event: the day the General Assembly adopts the Convention on the Rights of Persons with Disabilities. But for 650 million persons around the world living with disabilities, today promises to be the dawn of a new era — an era in which disabled people will no longer have to endure the discriminatory practices and attitudes that have been permitted to prevail for all too long. This Convention is a remarkable and forward-looking document. While it focuses on the rights and development of people with disabilities, it also speaks about our societies as a whole — and about the need to enable every person to contribute to the best of their abilities and potential. Throughout the ages, the treatment of people with disabilities has brought out some of the worst aspects of human nature. Too often, those living with disabilities have been seen as objects of embarrassment, and at best, of condescending pity and charity. Societies have even gone out of their way to ensure that persons with disabilities are neither seen nor heard. On paper, they have enjoyed the same rights as others; in real life, they have often been relegated to the margins and denied the opportunities that others take for granted. It was the community of the disabled themselves that worked tirelessly and insistently to promote this Convention, and the United Nations responded. In three short

Innovative Program Breaks Barriers for IT Professionals with Disabilities By Pat Maher


xtremely high unemployment and underemployment rates among capable and interested graduates with disabilities, coupled with improving employment levels in the IT sector has driven one firm to launch SPR/nAblement, an innovative new program focused on identifying, qualifying, placing and supporting new and experienced information technology (IT) professionals with disabilities in their clients’ operations. “Diversity goals that don’t include a significant inclusion of people with disabilities miss the paybacks expected by employers,” says Rob Figliulo, President and CEO of SPR Inc., the 34 year-old IT consulting firm ( with offices in Milwaukee and Chicago, that created the new service. “This is not just a matter of social justice; it’s a matter of getting the most productivity from an inspired workforce.” Pat Maher, nAblement manager, joined in September, 2004 to manage day-to-day operations. In support of his efforts, Janet Licitra was enlisted as the dedicated nAblement recruiter. Finally, in January of 2006, Don Karpiak, a 30 year senior manager in the IT industry and SPR’s chief marketing officer, was named chief operating officer


for SPR/nAblement. This high level of staffing represents Figliulo’s top-down support for the effort. SPR focuses on its traditional strengths in programming and development, quality assurance and testing, business analysis and program management to create opportunities for nAblement candidates to join the SPR team, on a contract-to-hire, internship or permanent basis. Additionally, through its Redpoint Technologies and MPS Partners services, SPR is able to create opportunities for qualified nAblement candidates at the leading edges of IT development. SPR/nAblement candidates have been placed at leading companies like Wolters Kluwer, Northern Trust, Manpower, CNH and Discover. Representative roles have been as mainframe programmers, help desk analysts, business analysts, data quality control specialists and web designers. SPR/nAblement has invested a great deal of effort to educating employers about its candidates’ unique characteristics and assets. Breaking Down Barriers (BDB) is a moderated panel forum presented to hiring managers in human resources and IT. It features a group of nAblement candidates that is highly diverse in terms of disability, ethnicity, age and gender. Candid discussion is encouraged to break through misconceptions regarding the ability of persons

years, the Convention became a landmark several times over: it is the first human rights treaty to be adopted in the 21st Century; the most rapidly negotiated human rights treaty in the history of international law; and the first to emerge from lobbying conducted extensively through the internet. We have already learnt from experience, in countries that have implemented legislation related to disability, that change comes more rapidly when laws are in place. Once the Convention is adopted, signed and ratified, it will have an impact on national laws that will transform how people with disabilities can live their lives. It will offer a way forward to ensure that those with disabilities enjoy the same human rights as everyone else — in education, employment, access to buildings and other facilities, and access to justice. It will not happen overnight. Much work remains to be done to produce the results that are aspired from the Convention. I urge all Governments to start by ratifying, and then implementing it, without delay. This adoption happens to fall, in the Western Christian calendar, on the day of Saint Lucy, celebrated in some countries as the patron saint both of blindness and of light. Let us ensure that this day indeed marks a new dawn. Let it usher in an age when all those living with disabilities around the world become fully fledged citizens of their societies.

with a disability to succeed in a professional role. SPR/nAblement has conducted seven BDB programs with great response from the audiences. Karpiak says, "Whenever we run a BDB program, I am always overwhelmed by the receptivity of the immediate client hiring managers. They get to experience the candidates first-hand and you can tell by their questions and the look in their eyes that they realize these candidates are bright, articulate, capable, eager to work and would gladly have them as members of their team." SPR/nAblement also conducts periodic Lunch & Learn sessions for nAblement candidates on topics of interest in the industry. The goal is to spur the interest of candidates who might want to pursue opportunities or further education in that subject area. Finally, SPR/nAblement has partnered with Professors Dave Strauser, Ph.D., of the University of Illinois and Fong Chan, Ph.D., of the University of Wisconsin at Madison to design and undertake research directed at identifying employers perceptions of the productivity of professional employees with disabilities. The study, which will be conducted in the six Midwestern states during 2007, should produce valid information SPR/nAblement can use to strengthen its efforts to better meet its clients’ needs for a capable, productive and diverse workforce. If you are interested in the SPR/nAblement service, contact Pat Maher, nAblement Manager, at or by phone at 630-220-8895.


January/February 2007

One Family’s Odyssey A Model for Health Care Advocacy By Janine Bertram Kemp And Charleene Frazier


lizabeth Clabaugh is a one-woman advocacy campaign. Clabaugh lives with her husband, Ed, near Harrisburg, Pennsylvania. She began her spinal cord injury advocacy in July, 2002 when Ed sustained a C-2 level SCI in an automobile accident. Ed, then 69, was on his way home from work, driving for Enterprise Rental Car. In a coma for three weeks, Ed remembers nothing about his accident. He is currently on workmen’s compensation insurance. Finding competent health care and services became an immediate problem. Ed was on a ventilator and developed a pressure sore in the hospital. Elizabeth said, “I didn’t know anything so I started to do research and soon connected

Where’s the Love? By Gary Karp


can remember when the open sexuality now rampant in our media would have been shocking. It would have been beyond the norms and comfort boundaries of the times. Not that I personally find it obscene. Hey, I was an adolescent boy in the 1960s, exactly when these boundaries were being challenged. But these kinds of cultural shifts happen very gradually, which I suppose explains why Barbara Eden in “I Dream of Jeannie” could wear that sexy genie outfit but they made her cover her belly button. The current era of near-full exposure evolved in a slow but unremitting pace. It seemed like a liberation at the time, gaining the freedom to more openly express and celebrate our divine sexual nature. Then free love turned out to have some costs, from

with Charleene Frazier of the NSCIA Resource Center. Charleene guided me and never once made me feel that I was a bother to her.” When Frazier learned that Ed had insurance that would pay for SCI rehabilitation, she immediately referred the Clabaughs to a respected SCI rehabilitation hospital. While Ed’s experience at this facility was very good, there were “some areas in which they were lacking,” says Elizabeth. Since doctors there thought Ed would never flourish, he was discharged with no plans for returning for an annual evaluation. Elizabeth found this offensive. “No matter what level of injury you have sustained, you always need an evaluation. There are new procedures coming out constantly that can greatly enhance the injured person’s quality of life or possibly help them become restored.” Soon the Clabaughs became members of NSCIA. They have continued to stay in touch with the Resource Center as new needs arose. Frazier has been impressed with the Clabaughs’ persistence, determination and success. “One of the biggest problems we see at the Resource Center results when people go to local hospitals and doctors who are unfamiliar with this life changing injury and its required health care practices,” she says.

“Further, if the person and his family have not received rehabilitation care that has taught them to advocate for best SCI practices, many secondary complications and poor health often follow.” Elizabeth was unwilling to allow anyone to take the easy way out by advising her to send her husband to a nursing home. She found it totally offensive to be told to “Just let your husband go!” The Clabaughs knew that Ed would need periodic hospital care and a long commute was not advisable. The local hospital claimed they were not equipped to treat Ed. Elizabeth said that was unacceptable. She said the local hospital was closest for them and that was where he would be coming. Elizabeth educated personnel about SCI and the care needed. [If you are working with your community hospital, read their mission statement and make them follow it. Go to their CEO if you must. Make them aware of what you need. Elizabeth has contacted four CEO’s.] After two years of using a feeding tube, Elizabeth was unwilling to watch her formerly healthy husband fail to thrive. She and Ed finally found an ear, nose and throat specialist to perform a laryngectomy (removal of the voice box). Since this operation, Ed can eat everything, has gained weight and is

doing well. The frequent aspirations of secretions have stopped and it has been three years since he has needed hospitalization for pneumonia. Ed is involved in all medical and health care discussions and decision-making. “You know your loved one best; don’t let the doctors discuss them out of their hearing range.” Elizabeth says that while she does not know that Ed’s good health and medical care are the result of her efforts, she does know that the medical staff is more kind to the Clabaughs now. At the beginning they were not. Ed is now under the care of a physiatrist at the International Spinal Cord Injury Center at Kennedy Krieger Institute and a pulmonary specialist at Good Samaritan Hospital, both in Baltimore, Maryland. He is soon going to Cleveland, Ohio to be tested for a diaphragmatic pacemaker. If Ed is approved for this procedure, hopefully he can be weaned from the ventilator, he has used since his injury. Like Ed Clabaugh, you may be the first person with SCI to get adequate medical care in your community. If so, you are paving the way for others. Elizabeth and Ed would be the first ones to tell you “Don’t let go. Hang in there and demand the best of care!!”

a booming divorce rate to AIDS. Considering the thousands of people who are indulging in truly-full exposure on the Internet (which I’ve explored purely as a matter of research, of course), our current culture’s modeling of sex is heading towards a near-complete absence of intimacy. Where’s the love? It’s a pretty complicated environment for anyone facing the dramatic changes in sexuality raised in the face of a spinal cord injury. How do you find new ground from the soft and uneven terrain of these skewed cultural messages? And if you happen to fit the prevailing image of young and sexy, it’s even harder to reframe all of this into something that feels like anything better than a compromise. Sexual culture believes that sex and disability are a contradiction in terms. We’re either duds in bed because of all we can’t do (or we’re entirely incapable of it), or else we’re seen as asexual, utterly without the desire. After all, if they can’t imagine how in the world we can open a door on wheels, how are they going to envision us as good lovers? Those of us who’ve faced this demon as we moved through the initial adjustment

phase know better. Our SCI doesn't hit the off switch on our sensual nature or our need for love and erotic expression. Seeking our intimate identity in the context of our disability actually shows it to us more clearly than ever. When we no longer fit the social norm, we’re prompted to find our own way. We discover how much remains possible — some of which we would never have found otherwise — and it puts the lie to these cultural beliefs. When we encounter an attractive someone and sense that they would never give us the chance, we know what they would be missing. The essence of loving and being loved doesn’t reside in the body. It’s born of the heart. The body follows after the fact. The very sensations which are so satisfying are also affirming of the infinite miracle of our humanity. They bring us fully into the present (can’t get off while you’re thinking about work, can you?), relieve tension and stress, and remind us that there is a world of experience and a point of view outside of our routine thoughts. This is big stuff, and it’s got little if anything to do with the functionality of your genitalia. The path of intimacy is a place where we come more and more into our true selves. Coming to terms with loss is forced on us

in the disability journey, but discovering how much we haven’t lost makes what we have all the more precious. Our appreciation of touch is amplified, we expand our search for any and every sensual experience our body remains capable of and we are challenged to trust our vulnerability and range of emotions with a carefully selected intimate partner. That’s where the great sex really is. This is the territory I explore in my new book, Disability & the Art of Kissing: Questions and Answers on the True Nature of Intimacy. It’s an exploration of the ways that the intimate journey is a path to ourselves, in and outside of our disability experience. It’s a guide along the path to the deep and reinforcing sense of self we find through love and loving. It ain’t easy for anybody, but the disability version of the intimate journey has some pretty profound potential. The payoff can be as big as we could ever hope; how we can push further than our initial fears suggest, find and deepen lifelong partnership with a loving partner (as I have been thus blessed) and the sweet erotic heights to be found under the covers. Then to hell with what the culture or anybody else believes about us.

Chapter Helps... Continued from page 9

Author Gary Karp and his wife, Paula Siegel.

We continued to send and host small delegations throughout the 1990s. When I relocated to the Medical College of Wisconsin in Milwaukee in 1998, I found out several of the SCI therapists at my hospital were board members of our local NSCIA chapter. I joined them and became a board member of the Southeastern Wisconsin Chapter of NSCIA. We continued to host and send delegations to Lithuania. In 2000 we officially named the Lithuanian disability group LZSPA as our sister organization. In 2004 we hosted Dr. Tomas Morkevicius, who has an SCI and is a rehabilitation physician and a member of Lithuania’s second SCI consumer

group the Lithuanian Paraplegia Association. Currently there are three hospitals with SCI rehabilitation programs in Lithuania. There are two physical medicine and rehabilitation physician training programs and several medically-based therapy programs. Every time I visit Lithuania I see more adapted apartments and more Lithuanians who use wheelchairs participating in their communities. Although it was quite humbling to learn how Lithuanians with SCI survived, we believe we have helped improve their lives. What we see now constantly reinforces the power of peer interaction and solidarity among people with disabilities. Dr. William P. Waring III, is the Rehabilitation Director of the Spine Center at Froedtert Hospital/Medical College of Wisconsin, Milwaukee, Wisconsin.

January/February 2007

NSCIA Mourns the Passing of Craig Hart Neilsen, Chairman, CEO and Founder of Ameristar Casinos, Inc.


orn in Logan, Utah, on August 30, 1941, Craig was the only child of Ray L. and Gwen Hart Neilsen. He moved with his family to Twin Falls, Idaho, when he was a child. He graduated from Twin Falls High School and then earned a Bache-

Craig Neilsen, The Denver Post. lor’s degree in political science at Utah State University. He went on to receive an M.B.A. in 1964 and a law degree in 1967 from the University of Utah. After graduation, he joined his father in his construction and real estate development

firm in Twin Falls. But Ray L. Neilsen passed away unexpectedly in 1971 after his son had been with the firm for just one year. After his father’s death, Craig founded Neilsen & Company, which soon became the largest and most successful construction and real estate development company in the region. This firm was responsible for the construction of many of Twin Falls’ major buildings and is currently involved in building the Canyon Park lifestyle center. Through Ray L. Neilsen’s estate, his family held a one-third interest in two Nevada gaming properties: Cactus Petes and The Horseshu in the town of Jackpot, Nevada. In the early 1980s, Craig moved from being a passive investor to taking a more active role. As he became more involved in casino operations, he began to envision the two properties as major resorts. Once he became president of the Jackpot properties in 1984, with characteristic determination and drive, he set out to make that vision a reality. He was making rapid progress towards this when, in early November, 1985, driving from Jackpot back home to Twin Falls, he was involved in a serious car accident that left him a quadriplegic. It was a cataclysmic event, but within about one year, Craig was back on the job – with more determination, if possible, then ever before. By 1987, he’d bought out

The Craig H. Neilsen Foundation For all his accomplishments as a business and community leader, Craig Neilsen’s greatest legacy just may be as a philanthropist. He was grateful for what he had and always remembered people who were less fortunate, particularly those facing similar challenges to his own. The Craig H. Neilsen Foundation focuses on spinal cord injury research and treatment. Craig brought the same vision, passion and organization to the creation of his foundation as he had to Ameristar. To find the most promising research, he created a scientific review board made up of seven leading researchers and clinicians in the filed of spinal cord injury or disease. This board oversees a stringent scientific review process, modeled on the one used by the National Institutes of Health, for all submitted research applications. To date, the foundation has funded more than 25 research grants for work at the nation’s leading scientific institutions. One of Craig’s goals for his foundation was to improve the quality of life for those living with SCI/D. To this end, he organized grant funding programs and a review board comprised of three lifelong SCI/D professionals. Using a formalized review process, this board evaluates grant applications from around the country. Among the programs that the foundation has helped to support are a summer camp for children with SCI/D in the Council Bluffs/Omaha community; a program offering adaptive recreational opportunities for adults who want to learn sports like skiing, scuba diving and bowling; and vocational training programs to help people living with SCI/D return to the workforce. In addition, the foundation purchases adaptive vans to teach people living with SCI/D how to drive, enabling them to maintain their independence. It also underwrites conferences to encourage collaboration among researchers and rehabilitation organizations in the SCI/D field.

Although Craig’s foundation mainly benefited research and programs, he supported numerous other organizations in his home communities of Las Vegas and Twin Falls. He was one of the founders of the Nevada Cancer Institute, a major contributor to the Agassi Foundation and a supporter of Las Vegas After School All-Stars. In Twin Falls, Craig underwrote a new computer center for the Boys and Girls Clubs and helped expand the cardiac unit for the local hospital. Ameristar Cares In 2003, Craig created Ameristar Cares, a program that includes both the company’s charitable giving and workplace giving campaigns while also supporting community volunteerism. Last year, under Craig’s direction, the company, its team members, and the foundation donated nearly $9 million and countless hours of time through Ameristar Cares to more than a thousand nonprofit organizations. In 2004, Craig expanded the Ameristar Cares workplace giving program by adding more eligible charities. He instituted a 100 per cent company matching program for all team member donations and, through his foundation, added additional matching funds for each donation to a designated local SCI/D organization. In 2006, more than 75 per cent of all Ameristar team members participated in the workplace giving campaign, which raised a record $2.5 million. For more information about Craig and the Craig H. Neilsen Foundation, or to make a memorial contribution in honor of his life and accomplishments, please contact his foundation at or (702) 5677072, or by mail at The Craig H. Neilsen Foundation, 550 Blue Lakes Blvd. North, Twin Falls, ID 83301-4403 Attn: Tributes.


the other shareholders in the Jackpot properties. Eventually he created Ameristar Casinos, the company he took public in 1993. There followed a period of aggressive growth. Under Craig’s leadership, Ameristar developed properties in Vicksburg, Mississippi; Council Bluffs, Iowa and Henderson, Nevada (which was later sold) and acquired existing properties in St. Charles and Kansas City, Missouri and Black Hawk, Colorado. Throughout this rapid expansion, Craig aimed to develop and operate only the highest quality gaming and entertainment properties – and he succeeded. Through his unique vision and untiring efforts, Ameristar became one of the country’s premier gaming companies, an acknowledged leader in its industry. Craig was a visionary, a man who could see things long before others could even begin to imagine them. He oversaw the expansion of a hotel and casino in the northern Nevada desert, the creation of an exclusive retail center on the rim of the Snake River Canyon in Twin Falls and the construction of the tallest hotel between Denver and Salt Lake (now under construction at Ameristar Black Hawk). Every Ameristar property – from its casino floor to its restaurants to its hotel rooms – bears the indelible mark of Craig’s forward-thinking vision, his meticulous attention to detail and his passion for construction and design. Those who knew Craig from afar, as a dynamic businessman, may be surprised to learn of another, equally important part of his legacy: his role as a philanthropist. He established the Craig H. Neilsen Foundation in 2003. Since then, the foundation has contributed millions of dollars, primarily toward spinal cord injury research and rehabilitation

programs at the nation’s leading scientific institutions. Craig also built Ameristar’s charitable giving programs, matching the contributions of the company’s team members with generous donations from both Ameristar and his Foundation. Through his leadership, Ameristar’s program quickly became one of the most successful workplace giving programs in this country, with participation rates at more than double the national average. In recent years, Craig’s remarkable achievements – and life – have been increasingly recognized. In 2002, he was honored as “Best Performing CEO” by the American Gaming Association (AGA). Three years later, he was inducted in the AGA’s Gaming Hall of Fame. Last September, Craig was honored as the Outstanding Business Leader by the Buoniconti Fund to Cure Paralysis. A month later, he was nominated by the nationwide membership of the National Spinal Cord Injury Association to the SCI Hal of Fame, as both Benefactor of the Year and Corporate Executive of the Year. He is to be honored posthumously as one of the Distinguished Alumni of the Year at the University of Utah’s 2007 Founder’s Day. Craig also served on the Board of Directors of the AGA. As a leader he earned the respect of everyone who knew him, for the inexhaustible passion he brought to any program or project that he undertook. But at least as impressive were the courage, determination and dignity that he demonstrated every single day in living with a spinal cord injury. Through his example, generosity and community spirit, he had a lasting impact on the lives of so many. Craig is survived by his son, Ray, his daughter-in-law, Nancy and stepdaughters, Jaime and Amanda.

Action through Collaboration

ing addressing the problems with the Medicare “in the home” regulation, a stem cell research bill, the Christopher Reeve Paralysis Act, access to rehabilitation, the CLASS Act and third party insurance issues. Plans are in the works to arrange meetings between members of the SCI Leaders group and appropriate members of the House and Senate to begin discussing our priorities. Members of the group are also collaborating by bringing their strengths to the table to address issues of shared importance. For instance, three members have agreed to work together to address issues of “real world” catheter use. Paul Tobin of United Spinal offered to query physicians in the American Paraplegia Society to get information on best practices/current standards of care related to catheter use. Eric Larson is designing a survey of NSCIA members who use catheters to determine current “real world” practices among end users. Mark Johnson will be incorporating the experiences and views of professionals at Shepherd Center. Whether it’s catheters, access to rehab, power mobility or any other relevant issue, everyone agrees that the collective power of this coalition has tremendous potential for high impact!

SCI Summit News By Eric Larson, NSCIA Chief Operating Officer


CI Summit 2006, themed Action through Collaboration, has already generated lots of both. One highlight has been the “SCI Leaders Group” that was a very direct outcome of the 2006 SCI Summit. This group was convened by NSCIA’s executive director and CEO, Marcie Roth, and comprises senior leaders representing social service, advocacy, educational, medical and research perspectives. The SCI Leaders group has already met a number of times via teleconference and has created an agenda of key issues and initiatives. For instance, participants have identified key legislative/policy priorities includ- is looking for experienced volunteers to moderate our on-line forum Please contact us at


January/February 2007

NSCIA CHAPTER & SUPPORT GROUP NETWORK ARIZONA CHAPTER Arizona United SCIA Telephone: 602.239.5929 Website: E-mail: CALIFORNIA CHAPTER WYNGS, NSCIA Telephone: 818.267.3031 Website: E-mail: SUPPORT GROUPS Leon S. Peter’s Rehabilitation Center Telephone: 559.459.6000 ext. 5783 E-mail: North Coast S.C.I. support group Website: Telephone: 707.834.6997 E-mail: CONNECTICUT CHAPTER Connecticut Chapter, NSCIA Telephone: 203.284.1045 Website: E-mail: DISTRICT OF COLUMBIA CHAPTER SCI Network of Metropolitan Washington, NSCIA Telephone: 301.424.8335 Website: E-mail: FLORIDA SUPPORT GROUPS Sea Pines Rehabilitation Hospital Telephone: 321.984.4600 Email: Capital Rehabilitation Hospital Telephone: 850.656.4800 Greater Orlando SCI Network Telephone: 407.823.2967 Email:

Tampa Bay Area Support Group Telephone: 800.995.8544 Website: E-mail: GEORGIA SUPPORT GROUPS Columbus SCI Support Group Telephone: 706.322.9039 E-mail: Central Central GA Rehab Hospital Telephone: 800.491.3550, ext. 643 ILLINOIS CHAPTER Spinal Cord Injury Association of Illinois Telephone: 708.352.6223 Website: E-mail: INDIANA SUPPORT GROUP Calumet Region Support Group Telephone: 219.949.5218 Email: IOWA CHAPTER Spinal Cord Injury Association of Iowa Telephone: 515.270.1522 E-mail: KENTUCKY CHAPTER Derby City Area Chapter, NSCIA Telephone: 502.589.6620 Website: E-mail: SUPPORT GROUP Friends with Spinal Cord Injuries Telephone: 270.493.0495 E-mail: MARYLAND SUPPORT GROUP Kernan Hospital SCI Support Group Telephone: 410.448.6307

Website: E-mail: MASSACHUSETTS CHAPTER Greater Boston Chapter, NSCIA Telephone: 781.933.8666 Website: E-mail:

SUPPORT GROUPS SCI Network of Central New York Telephone: 315.464.2337 Email: Long Island Spinal Cord Injury Telephone: 631.221.WALK Website: E-mail:

Rehabilitation Hospital of York Telephone: 800.752.9675 ext. 799 E-mail: SOUTH CAROLINA CHAPTER NSCIA South Carolina Chapter Telephone: 803.252.2198 Website: Email:

MISSISSIPPI SUPPORT GROUP Magnolia Coast SCI Support Group Telephone: 800.748.9398 Website: Email:

NORTH CAROLINA CHAPTER NCSCIA Telephone: 919.350.4172 E-mail:

TEXAS CHAPTER Rio Grande Chapter Telephone: 915.532.3004 E-mail:

MISSOURI SUPPORT GROUP Southwest Center for Independent Living Telephone: 417.886.1188 Website: E-mail:

OHIO CHAPTER Northwest Ohio Chapter, NSCIA Telephone: 419.389.6678 Website: Email:

VIRGINIA CHAPTER Old Dominion Chapter, NSCIA Telephone: 804.726.4990 Website: E-mail:

NEVADA CHAPTER Nevada Chapter, NSCIA Telephone: 702.988.1158 Website: Email:

SUPPORT GROUP Hillside Rehabilitation Hospital Telephone: 330.841.3856 E-mail:

WEST VIRGINIA SUPPORT GROUP Telephone: 304.727.4004 E-mail: Contact: Steve Hill

NEW HAMPSHIRE CHAPTER New Hampshire Chapter, NSCIA Telephone: 603.216.3920 Website: Email: NEW YORK CHAPTERS Greater Rochester Area Chapter, NSCIA Telephone: 585.275.6097 E-mail: New York City Chapter, NSCIA Telephone: 212.659.9369 Website: E-mail:

Attorney Ronald R. Gilbert

PENNSYLVANIA SUPPORT GROUPS Rehabilitation Hospital of Altoona Telephone: 800.873.4220 Greater Pittsburgh Rehabilitation Hospital Telephone: 412.856.2584 E-mail:

WISCONSIN CHAPTER NSCIA Southeastern Wisconsin Telephone: 414.384.4022 Website: E-mail:

Delaware Valley SCIA Telephone: 215.477.4946 Healthsouth Harmarville Telephone: 412.826.2625 Magee Rehabilitation SCI Resource & Support Group Telephone: 215.587.3174 Website:

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.

Who’s Who in American Law 1985 through present

Attorney for the Spinal Cord Injured if you, a friend or loved one, has been injured by: (1) A product or use of a product (e.g. helmet, vehicle even if it is a one vehicle accident and you are the driver, ladder, trampoline more), (2) On someone else’s property (e.g. falls, gunshot, recreation or athletic events more), (3) During a medical procedure or as a result of a prescription drug — YOU MAY BE ENTITLED TO ECONOMIC RECOVERY. Put the nation’s top personal injury specialist to work for you. Ron Gilbert has helped over 300 spinal cord injured persons in 35 states collect the compensation they deserve. If you have suffered a spinal cord injury, he will try to help you. Compensation from successful and responsible litigation can open doors to a better life. Some of Ron Gilbert’s many efforts to help the spinal cord community include: • Helped sponsor legislation benefitting spinal cord injured persons. • Served as Secretary and member of the Board of Directors of the National Spinal Cord Injury Foundation. • Received a Certificate of Appreciation for Prevention work from Michigan PVA. Time may be working against you. A rule of law called the Statute of Limitations puts a time limit in which you may file an injury claim. This time can be as short as one year. If you have been seriously injured, time may be running out. Don’t wait. There is no cost to talk to Ron.

For help, call Ron Gilbert today for a free review of your legal options. He’ll provide legal help as well as assistance in planning, and coping with the physical, emotional and other challenges you face. 1-800-342-0330 Cases Handled Ronald R. Gilbert, P.C. / Personally Nationwide If you have suffered a spinal cord injury, call today to receive a free legal consultation and complimentary copy of Spinal Network and a handbook on legal options for victims of spinal cord injuries.



FOR VICTIMS OF SPINAL CORD INJURIES • Financing The Future: Managing Disability-Related Expenses

• Liability, Compensation And Your Rights • Legal Options • Improving Safety Through Legal Action • Finding And Choosing An Attorney • Getting Help: A Guide To Organizations • For Details, Go To Ron’s Website — For Legal Options And Professional Help.

January/February 2007


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January/February 2007

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SCILife, Vol. 4, No. 1  
SCILife, Vol. 4, No. 1  

January/February, 2007. Leading the way in maximizing quality of life for people with spinal cord injuries and diseases since 1948.