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March/April 2006

Vol. 3, No. 2

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

Dana Reeve 1961–2006

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ess than a year and a half following the loss of her husband Christopher, Dana Reeve died of lung cancer on Tuesday, March 7 at the age of 44 at Memorial Sloan-Kettering Medical Center in New York City.

“Money Follows the Person” Bill Passes Congress, New Mexico Signs On By Janine Bertram Kemp

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Having never been a smoker, she announced in August, 2005 that she was facing the disease and would begin a course of chemotherapy. Subsequent reports were that the tumor was being reduced and the prognosis was hopeful. At a gala event where the Christopher Reeve Foundation launched their new theme, “Go Forward,” Dana told reporters, “I'm beating the odds and defying every statistic the doctors can throw at me. My prognosis looks better all the time.” She added, “I was married to a man who never gave up.” Lung cancer commonly affects nonsmokers — women moreso than men — and is a particularly lethal form of the disease. Sixty percent of those diagnosed die within one year. One in five women who get the disease never smoked. Reeve’s past of performing in smokey cabaret clubs has been speculated on as a factor in contracting the disease. Kathy Lewis, Christopher Reeve Foundation president said, “Along with her husband Christopher, she faced adversity with grace and determination, bringing hope to millions around the world.” Lewis had visited Reeve in the hospital on Continued on page 11

here is a ray of hope on the horizon for thousands of people with SCI and other disabilities who are warehoused in nursing homes and institutions. It is called the “Money Follows the Person Rebalancing Act” (MFP). This federal legislation allots $1.75 billion for Medicaid recipients with disabilities currently in institutions who choose to live in the community. For example, a person with quadriplegia who is living in a nursing home could take the dollars it costs to live in that institution and instead use it for services in the community. The principle of having access to services in the “least restrictive setting” is contained in the

San Francisco's controversial Laguna Honda — the world's largest nursing home. Americans with Disabilities Act, and has been supported by the U.S. Supreme Court in its Olmstead decision. The annual institutional cost for one person with significant mobility impairments can reach over $300,000. Historically, there has been an institutional bias in Medicaid funding; the federal government would pay for a person to live in a nursing home, but refuse to spend the same or less

Worship On Wheels N.O.D.'s Program for Spiritual Access By Rev. John Gugel

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ur home was alive with the sound of music from morning 'til dark. My daughter Jessica loved the Sound of Music video when she was a little tyke and played it over and over. One day she came to me and asked, “Daddy, what's an asset?” Not knowing where that came from, I asked her what she meant. “They say that Maria's not an asset to the abbey. What do they mean?” “Well, an asset is something you own that has value,” I began to explain. “In Maria's case, some of the stuffy nuns felt that Maria was too much of a free spirit who did not add to their life together. I do not know how much of that she

understood, but I do know that many of our churches and synagogues seem to not recognize that the people among them with disabilities are assets to their faith communities. Instead, they may treat them as liabilities or as objects of pity. They do not count their unique talents, particular gifts, and living experiences to be useful to the whole body. It is apparently not enough for persons with disabilities to be forced to negotiate physical barriers on a daily basis without having to confront the attitudinal barriers as well.

dollars for services that would allow people with disabilities to live in their own homes. Sarah Harris, a wheelchair user from Hobbs, New Mexico with spinal disease, is a former nursing home resident. “It was extremely hard in the nursing home. I felt powerless, trapped, like I was suffocating. I often went five days without a bath. I got a bacterial infection there and thought it was Continued on page 8

Communities of faith should accept us as we are — after all, the God whom we all worship accepts us as assets. God created us in God's own image and pronounced all that he created as “good.” So why do some of God's “abled” people find that so hard to embrace? Who is to say that the model God chose is one of perfection, that God does not use a wheelchair? A popular bumper sticker from the 60s read, “God Didn't Make Junk.” The National Organization on Disabilities (N.O.D., www.nod.org ) is leading the effort to change attitudes as well as removing legal and physical barriers for people with disabilities. Through its “Religion Continued on page 21


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March/April 2006


March/April 2006

from the editor

How Horrible? SCI Life STAFF

By Gary Karp, Executive Editor, SCI Life

NSCIA NATIONAL OFFICE STAFF

ost people you’d pinch on the street would assume that having a spinal cord injury is a pretty horrific experience. Unremittingly, unarguably, and unimaginably. It would — and does — surprise them to hear that my experience of SCI isn’t one of unmitigated suffering. It has its inconveniences, to be sure, and there are moments — if not days — of profound sadness and frustration. But these seem to be part and parcel of the texture of the experience of SCI — if not life in general. I’m not sure I can distinguish what of these feelings are about the SCI or just the waves and troughs of the overall emotional map of my life. We do what we have to do, we endure what we choose to endure in return for the gift of living to our potential. Or at least trying. That said, I know full well that I don’t lightly put myself into situations where I’m faced with the limitations of my paralysis. I avoid crowds because I can’t move or see what’s going on (unless there’s an accessible

EXECUTIVE EDITOR: Gary Karp DESIGN AND LAYOUT: Nikolai Alexeev ADVERTISING SALES: Joyce Parker DATA INPUT: Bonnie J. Haynes

CHIEF EXECUTIVE OFFICER: Marcie Roth CHIEF OPERATING OFFICER: Eric Larson RESOURCE CENTER MANAGER: Bill Fertig DEVELOPMENT ASSOCIATE: Deanna Ackerman RESOURCE CENTER ASSOCIATE: Daniela Castagnino RESOURCE CENTER ASSOCIATE: Downey Hinrichs RESOURCE CENTER ASSOCIATE: Charleene Frazier WEB SERVICES/PUBLISHING: J. Charles Haynes, JD WEBMASTER: Nikolai Alexeev

BOARD OF DIRECTORS

Executive Committee PRESIDENT: Harley Thomas CHAIR, EXECUTIVE COMMITTEE: Janeen Earwood VICE-PRESIDENT FOR MEMBERSHIP: Pat Maher VICE-PRESIDENT FOR CHAPTERS: Shawn Floyd VICE-PRESIDENT FOR DEVELOPMENT: John Fioriti VICE-PRESIDENT FOR COMMUNICATIONS: Dana W. Matthews, SciD, JD, MBA TREASURER: Jeff Leonard SECRETARY: Susan Douglas, MD BUSINESS ADVISORY COMMITTEE LIAISON: Tari Susan Hartman-Squire CEO/EXECUTIVE DIRECTOR: Marcie Roth Directors Pamela Ballard, MD Tapan Banerjee, Ph.D. Teresa Fausti Blatt David Boninger, Ph.D. Milita Dolan Richard Holicky Paul Mortensen Christine N. Sang, M.D., M.P.H Cheryl Lady Vines Gary J. Viscio, Esq. Suzanne Wierbinski General Counsel Leonard Zandrow, Esquire

SCI Life PUBLISHERS

PUBLISHER: Charles W. Haynes PUBLISHER: J. Charles Haynes, JD

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: membership@spinalcord.org, 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 info@spinalcord.org or go to www.spinalcord.org.

For additional information on advertising in SCILife, contact: Advertising Sales Department, SCILife, HDI Publishers, PO Box 131401, Houston, TX 77219-1401, tel 713.526.6900 fax 713.526.7787, e-mail: chaynes@hdipub.com www.hdipub.com SCILife © 2006

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SCI Peer Mentoring A Program in our Nation’s Capitol By Brenda Gilmore

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he definition of a mentor, “a wise and trusted counselor,” is taken seriously by the SCI peer mentors at the National Rehabilitation Hospital (NRH) in Washington, D.C. NRH’s SCI Peer Mentoring Program is now entering the third year of a five year grant provided by the National Institute on Disability and Rehabilitation Research (NIDRR). It’s proving to be well-received by the nursing and therapy staff, but more importantly, by the participants — or mentees, as they are called. The purpose of the project is to determine whether peer mentoring can prevent certain secondary conditions such as urinary tract infections, pressure sores, and autonomic dysreflexia in newly-injured SCI patients. Peer mentors who have an SCI regularly collect information from their mentees regarding their physical and emotional health. While these are the primary concerns of the project, the peer mentors offer listening ears and advice on topics essential to their mentees’ successful

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platform in place), I opt out when friends go to the beach (with the occasional exceptions of the sand being wheelable or there being a good boardwalk on hand), and choose places like museums and basketball games — which I love and which have elevators and nice solid, level floors. We manage our experience of SCI. Just like everyone manages their emotional boundaries, choosing situations where we feel uplifted, avoiding the ones that add to the psychic load. Best we can, that is. I know myself to be fortunate in many, many ways, and don’t for a moment take for granted that being a middle-class, educated, white male T12 para doesn’t cast my experience of SCI a much easier one than for a low-income person of color with a C5 SCI. There is great range here. I happen to fall on the easier end of the scale. Perhaps that’s why it feels like a calling for me to try to make what difference I can in the lives of people who are on the other end of the spectrum. Seems like an obligation — if not a calling — to not hog my advantages for myself. What I believe about the experience of SCI is that only part of it is innate to the SCI itself. Plenty of high quads are having active, meaningful lives. Their SCI does not in and of itself determine their experience. The entirely external factors of getting access to services, equipment, and support are just as significant. One’s internal experience is, at least partly, informed by assumptions and beliefs about disability — beliefs many of us bring with us into the experience which are often deeply negative and disempowering, and not aligned with the truth of what is possible in our lives, regardless of injury level, as NSCIA board member David Boninger discusses in this issue.

My role is to spread information, hopefully evoke insights, and support people with SCI by helping them to cast their experience in their own terms. And I could not be better aligned than to work with NSCIA, which addresses all array of obstacles and opportunities that help people with SCI actually attain that true potential. The Experience of SCI, this issue’s theme, is a collective experience, impacting family and friends and colleagues and neighbors in successive circles of closeness to the person with SCI. The family faces substantial adjustments and obstacles, too, while playing the role of supporter, swamped with the makeover of their world for the day of return to the outside world after rehab. And they face as wide an emotional range — grieving the loss, chafing under the required changes, grasping to hope of recovery, keeping up a strong front to meet the needs of their loved one. For some, it’s quite a burden. For many, it’s a mission, an expression of the kind of commitment and loyalty that is unique to family. My parents were on hand every day for me, and I can’t imagine what the whole initial period would have been like without them there, believing in me, making sure things were being taken care of — and bringing me some decent food! So we’re thrilled to introduce the first in a new series thanks to the folks at Virginia Commonwealth University, “For the Family,” (page 17) to affirm and hopefully contribute to the role of our precious family members who take this incredible ride with us, often with little recognition. In the end, experience is utterly individual. Some of it happens to us, some of it we get to color through our own eyes and beliefs. May yours be growthful, interesting, and more than just a little fun.

re-entry into the community. For new SCI patients, the benefits of having a peer mentor go far beyond satisfying the requirements of this grant-funded project. After all, once the project ends and contact with the peer mentor stops, life as a person with a SCI will continue. A peer mentor can assist mentees in setting longand short-term goals, and together develop a plan to reach those goals. It is important to instill an optimistic, realistic outlook in newly-injured individuals so that they can look forward to living a full, healthy life. Whether it’s to go back to school, get a job, or learn to be more independent, peer mentors have personal experiences they can share, access to resources, and contact with NRH clinical and research staff who can also help. NRH peer mentors also address the personal, social and physical aspects of living with SCI. They can answer the questions that newly-injured patients are often uncomfortable asking doctors, nurses, or therapists. They show and share ways to make everyday activities like doing transfers, pressure reliefs, or bowel and bladder programs easier, and help their mentees learn to “listen to their body” in order to recognize the signs of potential problems. Learning to prevent and identify medical complications like urinary tract infections, pressure sores, and autonomic dysreflexia is essential to living a long and healthy life with SCI.

Having a positive social life is important to everyone’s total development and happiness. Peer mentors share the inside line on accessible places to eat, shop, or just enjoy sports and entertainment. Peer mentors can also provide mentees with transportation resources and their personal experiences with mass transit, private transportation, or learning to drive themselves. Mentees often assume they can no longer participate in a sport or activity because they can’t walk, so peer mentors discuss the many ways that activities can be adapted, and also introduce them to new activities that they can enjoy and succeed in which they might never have considered prior to their injury. Personally, I tried a number of wheelchair activities and sports (kayaking, scuba diving, basketball, track) before I found my niche — wheelchair tennis. It turned out to be the best experience in my new life. Just seeing others with the same or even higher level injuries accomplishing so much — not just in the sport but in their lives — showed me that I had set my expectations for myself way too low. I watched them as they made easy transfers from their wheelchairs into their cars, movie theatre seats, and restaurant booths — things I never thought I would be able to do. Being able to influence others is a tremendous responsibility, whether it Continued on page 21


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March/April 2006

from the executive director

Embrace the Dream By Marcie Roth, Executive Director, NSCIA

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s I write this, I celebrate the life and work of Coretta Scott King, who died on January 31st. She and her husband Dr. Martin Luther King, Jr. had a dream of a society where people, despite their differences, could live and work together. Last year, we at NSCIA acted on a dream: to bring together a broad cross-section of the community of people devoted to the potential of people with spinal cord injury, including groups with quite different agendas. SCI Summit 2005: “Facing Issues, Creating Solutions” was the manifestation of our dream. The gathering, held last May in Washington, D.C. and co-sponsored by the U.S. Department of Health and Human Services (HHS), Office on Disability, was the first of its kind. It succeeded far beyond our expectations. Over

200 people participated from every facet of our community — people with SCI including youth and families, researchers, federal government agency representatives, corporate business people, advocacy organization leaders, athletes, and medical and product providers. For three days, participants delved deeply into five breakout areas crucial to people with SCI: community living, rehabilitation, research, technology, and health promotion. We all enjoyed the Washington, D.C. premiere of the Oscar-nominated film, Murderball, and hearing from its star Mark Zupan on opening night. We were inspired by the wisdom of Dr. Margaret Gianinni, Director, of the Office on Disability, HHS, who served as our opening keynote speaker and partner throughout. Paralympic gold medalist and Washington lobbyist Ann Cody led us through Policy 101, and we enjoyed a stimulating panel discussion by an incredible lineup of disability media players — including NBC’s John Hockenberry, Robert David Hall of CBS Television’s CSI, New Mobilty editor Tim Gilmer, and other disability and mainstream superstars. Perhaps the brightest highlight of the Summit was the celebration honoring the first ten individuals to be inducted into the SCI Hall of Fame, created to honor the achievements of people with SCI and those who serve them. You couldn’t invent a more diverse group of people than those selected by our membership and honored at the Hall of Fame ceremonies at the John F. Kennedy Center in Washington, D.C. Inductees included: Dr. Rory Cooper (Assistive Technology); Dr. Wise Young (Research); Randy Snow (Sports); Marilyn

Hamilton (Entrepreneur); Christopher Reeve (Benefactor); The Honorable Senator Tom Harkin (Legislative); Barry Corbett (Disability Awareness); Teddy Pendergrass (Entertainment); John Hockenberry (Media); and Duane French (Corporate/Government Executive). People from the “old guard,” who have moved on to other concerns after working on SCI issues for thirty, forty, or even fifty years, came to the Summit, as did people who had recently been injured, all with valuable contributions to make. It was a pleasure to have them at the table working together, exploring ways of changing systems and busting barriers to improve the lives of people with SCI. But let’s face it — factions exist within our community. Some focus on research toward a cure, others focus on medical care or community services or other areas addressed in the Summit breakout groups. They all do vital work for people with SCI, yet too often these groups work in their own silos, rarely connecting with each other to share our respective strengths and successes. Breaking through these divisions and fostering ongoing collaboration was one of the highest targets of our Summit dream. We’re proud to have created an opportunity to bring everyone together, but recognize that some people who were physically present were not quite ready to join us in breaking down the political and philosophical walls that separate us. Fortunately, that was absolutely the exception, limited to less than a handful of attendees. In almost every other case, the beginnings of new partnerships and terrific relationships were forged. SCI Summit 2005 was a huge success,

but it was just a beginning. Much work remains for our dream to become a reality. We understand that there are scarce resources and that it’s natural to be uncomfortable among people who act or think differently than ourselves. Yet, we’re going to maintain a clear, steady focus on bridge-building. Though we don’t pretend to be perfect bridge-builders, we extend an invitation to everyone to join us in this effort — even those who aren’t that comfortable playing together in the sandbox. It is our duty, our obligation, and our best opportunity to serve our constituents. As Martin Luther King said, “[we need] to remind America of the fierce urgency of Now. This is not time to engage in the luxury of cooling off or to take the tranquilizing drug of gradualism.” We need to redouble our efforts and build an even better Summit in 2006. Participants from over thirty states attended last year’s Summit. This year we need representation from all fifty! The dates of our next SCI Summit have just recently been changed to October 29 – November 1, 2006 at the Hyatt Regency in Bethesda, MD, with the SCI Hall of Fame induction ceremony on October 30th. Details are at www.spinalcord.org. We invite your input and ideas about the next Summit; What issues do you feel should be addressed? Who should be there? In which categories should we be seeking nominations for the next round of SCI Hall of Fame inductees? Please send your thoughts and ideas to scisummit@spinalcord.org. Help us build bridges and join us in spanning turbulent waters. Our whole can be far greater than the sum of our parts.


March/April 2006

from the president

Lessons to Learn By Harley Thomas, President, NSCIA

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he United States received a wake up call on September 11, 2001. For the first time since the events at Pearl Harbor on December 7, 1941, our great country was attacked by a foreign entity without advance warning. What did we learn from this devastating event? More importantly, what did the disability community learn? The answer to both questions is pretty much the same; we were woefully unprepared to face a disaster of this magnitude — or for that matter, most any disaster. Our first responders were totally unprepared, and the general public had little or no clue as to what action would be appropriate. There was complete confusion, and astonishment that such an event was even possible! In the aftermath of 9/11 many questions still remain unanswered. Should people with mobility impairments work above ground level? In the event of an emergency who is responsible to do what? If you have a mobility impairment, who should you contact if you need help? What advance

“Too Optimistic” So They Told Me By Molly Hale

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une 24, 1995, lying in bed in ICU, hours after being extracted from my car, I remember the surreal experience of listening to the sounds of voices fading in and out “her neck is broken… we can take the pressure off the cord… paralyzed from the shoulders down… people don't come back from this….” Folks were parading by; husband, family, friends, doctors, nurses, all speaking in hushed tones of concern. Drifting in and out of drugged consciousness, I found myself looking quietly to my interior for the voice of comfort that always comes in stillness and meditation, grateful that I was familiar with quiet — for everything in my body was quiet and unmoving, except my mind and my lungs. I've been at this quadriplegic thing now for ten years — the C5–6 incomplete kind. Pondering how I continue managing my physicality in life, I’m struck by the thought that “every experience that came before I rolled my car and broke my neck was preparing me to respond to just such an occurrence.” Hmmm! I had familiarity with and practiced healing modalities that allowed me to bring an alternative approach

planning should you do for self preservation? What is your responsibility when a mandatory evacuation is called? By the summer of 2005 most people believed we had the answer to these critically important questions, and that we were ready for potential future disasters. We now have a Department of Homeland Security, and our government is keeping us all safe and out of harm’s way — so we believed. Should disaster occur, our first responders will surely know what to do and individuals with a mobility impairment will be taken care of. We can relax in the confidence that government on all levels will know how to react. Then, on August 23, 2005 hurricane Katrina formed over the Bahamas and later crossed southern Florida as a category one storm. Once Katrina cleared land and entered the Gulf of Mexico, it quickly became the strongest hurricane ever recorded in the Gulf. On the morning of August 29, 2005 Katrina once again made landfall as an extremely large category three storm along the Central Gulf Coast near BurasTriumph, Louisiana. Five days before it made landfall in Louisiana, storm tracking indicated that Katrina would likely be the “big one.” Evacuation orders were given and everyone living on the Gulf Coast, along with thousands of visitors, were “encouraged” to evacuate. With five days advance warning and all of the lessons learned from 9/11 one might have thought that loss of life would be minimal this time around. The storm surge from Katrina caused catastrophic damage along the coastlines of Louisiana, Mississippi, and Alabama. Levees that separated Lake Pontchartrain from New Orleans were breached by the surge, ulti-

mately flooding about 80% of the city of New Orleans. Wind damage was reported well inland, impeding relief efforts. Damage from Katrina is estimated to be in excess of $75 billion, making it the costliest hurricane in United States history. The storm killed over 1,400 people making it the deadliest U.S. hurricane since 1928. As we now know, thousands of individuals did not evacuate for one or more reasons. The 2000 census revealed that 27% of New Orleans households, amounting to approximately 120,000 people, were without privately-owned transportation. Additionally, at 38%, New Orleans has one of the highest poverty rates in the United States. These factors may have prevented many people from being able to evacuate on their own. Consequently, most of those stranded in the city were poor, elderly, sick, or had a disability. Most did not have transportation or access to transportation. Emergency planning, procedures, and execution at all levels of government — local, state, and federal — failed miserably. What went wrong? How could a disaster of this magnitude happen with the benefit of five days advance warning? As a person with a mobility imparment, what can we do to ensure our safety in the event of a disaster? If we need help to evacuate, who do we call and how can we be sure someone will answer the call for help? Obviously these questions have different answers for every individual. What we can do, is make certain WE have a plan, WE know what to do, WE know where to go, WE know who to call. Unfortunately it is painfully apparent that in time of emergency and disaster, without a well thought out and executed plan, we cannot expect the cavalry to come to the rescue.

to my injury and thus, my life. The question, “Why me?” didn't get much of my attention. It was more, “Why not me?” Knowledge from years of studying mind-body relationships was all coming into play. Was I going to “walk my talk?” (no pun intended), or would I collapse into some desperate abyss? It’s easy to talk of kindness, compassion, loving action, perseverance, and right action when life is moving along easily. This was to be the true test. Growing up in a home with a basic attitude of “there is a silver lining in every cloud,” I had practice and success looking for the “good” in things, and my mind naturally drifted in that direction when I was injured. “What is this about and what am I here to do?; because here I am. Resistance is futile.” This attitude enabled me to ignore my medical team when they told me I was “too optimistic about my future.” I had the great fortune of being introduced to the idea that I was responsible for the way I respond to conditions in my life. Wow! A little scary since every moment has choice involved. Each moment an opportunity to choose a path, a way that feels good in the mind and

the soul and harms no one; a choice that brings joy, contentment, peace, resolution. So empowering. Self-awareness grew and I became adept at recognizing what my mind was thinking and what emotions were stirring. Then, I could act using a lovingkindness model with others and myself. This was a deeply critical skill to develop; it enables me to feel my sadness when it comes yet not dwell in it. I have a body, yet I am not my body. I have work or employment though I am not defined by my employment for work is an aspect of my interests. I have a vision of myself walking but am not attached to the outcome. Interested? Yes! Attached? No! Whatever animates me continues dwelling inside this body and is totally intact. Molly Hale.

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Partners

We gratefully acknowledge the following NSCIA Business Partners who help make this publication possible.

MEMBER VALUE PARTNERS Bank of America New Mobility/Leonard Media Group

BUSINESS MEMBERS BioDerm CSS Medical EinSof Communications Three Rivers Holding LLC Wheelchair Getaways

Visit www.spinalcord.org for details The process of recovery and stabilization after injury is not linear. I am familiar with activities that require practice, doing something over and over and over. I swam competitively and was trained to put in the time and effort to increase speed and stamina. As a martial artist practicing aikido for eleven years at the time of my injury, I knew how to arrive at each day’s training with a beginner's mind, looking for what was new in a technique I had been studying for years, seeking freshness. The process of learning to be comfortable with the plateaus — the times when my art seemed to be stagnant or even going backwards — has proved to be a great asset as I faced my spinal cord injury. I suddenly sense that this sounds as though I’ve been out here living my life alone. Far from it. My injury did not occur in a vacuum. I had many established relationships; husband, children, mother, brothers, friends, martial art community, employment community. All were effected by my injury. Everyone was a beacon of light and loving as they gathered around, feeding me, dressing me, attending to me, massaging me, including me, visiting with me, caring for me. Over the years, many of these relationships have changed, for that is the nature of relationship. What remains stable is my attitude, my gratitude, and my mantra, “God, grace, gratitude, love, appreciation, forgiveness, healing, energy, synchronicity, patience, abundance, peace, bliss.”


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March/April 2006

Rare Dedication.

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In the rapidly changing world of health care,

Craig Hospital in Denver continues its solid and freestanding commitment to the specialty rehabilitation and research of people with spinal cord and traumatic brain injury. For more than 49 years, Craig has been an international leader in the field, and each year serves more than 1,500 patients from 47-50 states and several countries. Craig achieves outstanding clinical outcomes and patient and family satisfaction. Craig’s long-term success has been primarily due to focused specialization and expertise, staff loyalty, and a culture of compassion. Craig’s executive staff average 22 years at Craig, primary physicians average than 13 years at Craig, and clinical staff more than eight years at Craig. Craig’s record of staff longevity is remarkable, and this cultural and financial stability allows staff to maintain a single focus — to continually improve services and outcomes for patients, families, insurance carriers, and case managers. In addition to state-of-the-art rehabilitation treatment programs and facilities, Craig is a leader in spinal cord (SCI) and traumatic brain injury (TBI) research. Craig is a NIDRR Model System Center for SCI and TBI, and Craig’s Center for Spinal Cord Injury Research is pioneering regeneration research, including a Phase II Macrophage Clinical Trial called ProCord™ with Proneuron Biotechnologies, Inc. in Tel Aviv, Israel, and collaboration with the Karolinska

Craig Hospital 3425 South Clarkson Street

Institute in Sweden on stem cell research. As a non-profit, independent hospital governed by a local community

Englewood, Colorado 80113

www.craighospital.org

Board of Directors, the Craig family is committed to delivering the highest quality of treatment available anywhere. Ask anyone whom Craig has served, and you’ll receive a consistent answer — Craig Hospital is, indeed, a very special place.

Caring Exclusively for Patients with Spinal Cord and Brain Injuries.


March/April 2006

The Language of Disability What’s In A Name? By Lester Butt, Ph.D.

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n psychology — or more specifically, in the specialty of “psycholinguistics” — language is considered to have a close relationship to thought. In 1969, psychologist J.J. Jenkins suggested three hypotheses: 1. Thought is dependent on language; 2. Thought is language; and 3. Language is dependent on thought. In the end, Jenkins believed all three hypotheses were accurate. Emanuel Kant defined thinking in 1781 as “talking with oneself,” corroborated by Friedrich Müller’s 1887 reflection, “What the psychologist has hitherto called thought is in short, nothing but talking to ourselves.” Whatever one’s theoretical framework, it is difficult to imagine language without its relationship to thought and so — one’s very consciousness. Consider this contemporary case in point: In 1996, the advertising industry spent $181 billion exposing U.S. consumers to marketing messages. This industry well understands how language influences thought, touting cultural values that involve strength, physical beauty, speed, virility, potency, stamina, youth,

from the edge

Facing Reality

The True Challenge of SCI By Susan Douglas M.D., NSCIA Board Member

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ith advances in medicine, spinal cord injured persons now commonly survive for forty years or more. We have been able to clearly identify related, potential medical problems as we age. So, on top of “The Stigma” already associated with disability, people with SCI face the stigma of aging. The potential issues are vast — overuse problems, social isolation, depression, infections, antibiotic resistance, skin breakdown, and osteoporosis. Just to name a few. Very little has been achieved in planning for treatments as these problems present themselves. At the present moment, prevention is the most powerful tool we have — a loud call to arms for acute rehabilitation centers to institute prevention programs immediately for newly-injured patients. This may seem obvious, but several problems within the disability community are interfering with the process of prevention of secondary complications in spinal cord injury. The greatest of these, I believe, is “The Stigma.”

productivity, activity, and independence. These culturally driven stereotypes are often highly objectionable to those with disabilities, who can readily take issue with the perception that these are the only acceptable human attributes that lead to acceptance, value, and credibility. The disability community responded with understandable outrage to the egregious Nike advertisement (Backpacker Magazine, October, 2000), with its offensive, disparaging language towards those with disabilities: “…Right about now you're probably asking yourself, 'How can a trail running shoe…help me avoid compressing my spinal cord into a Slinky…rendering me a drooling, misshapen, nonextreme-trail-running husk of my former self, forced to roam the earth in a motorized wheelchair with my name embossed on one of those cute little license plates you get at carnivals or state fairs…” The sociologist George Herbert Mead wrote that an “individual’s concept of his or her self is a reflection — or more accurately, a refraction, as in a fun-house mirror — of the way he or she is treated by others. And if a person is treated with ridicule, contempt, or aversion,” Mead continued, “then his or her own ego is

diminished… one’s dignity and humanity are called into question.” With this perspective, one can readily appreciate how cultural values and language can have a negative impact on a person with a disability’s sense of self. Sociologist Irv Zola noted, “Born for the most part into normal families, we are socialized into that world. The very vocabulary we use to describe ourselves is borrowed from that society. We are de-formed, dis-eased, dis-abled, dis-ordered, ab-normal and, most telling of all, called an ‘in-valid’.” Consider the historical language of disability. The term “handicapped person” is objectionable in that it defines the person via the handicap or, even more deplorable, implicates one’s very personhood as handicapped. The then-acceptable term that followed was “disabled person.” However, this term reflects the same difficulties as its predecessor. Presently, the term “person/individual with a disability” is utilized, with personhood placed in a primary position with the descriptor “disability” relegated to secondary importance. Phrases such as “suffered from,” “afflicted by,” or “victim of,” “spinal cord injured,” “wheelchair bound,” etc. are eschewed given their inherently negative connotations. Indeed, language guidelines from the National Association of Newspaper Journalists call for “people first” language. These alterations of language imply a

It begins early in acute rehabilitation with the idea of appearing “normal” as if nothing changed after the injury — an attitude of trying to prove that “I can still do anything. I haven’t changed.” Rehabilitation professionals struggle with the balance between fostering activity and independence on the one hand, while trying to help people adjust to the realities of their disability. Inpatients and their families may well be employing denial as an important protective emotional tool. The Stigma is ripe for growth in such conditions. Spinal cord injuries happen mostly to young men in their early 20s, whose paralysis and loss of function must be handled very delicately. It is no coincidence that the incidence of spinal cord injury is high at this age. This is a formative time in young people’s lives, a time of defining who they are, what they are to become, which profession they will choose. In this poignant period, families and friends are very supportive, trying to help the person re-assimilate into the community. At this stage in their adjustment there is structure and assistance with decisions. Not knowing that this approach may be hurting more than helping, the shocked patient and families forge forward. This results in vigorous enthusiasm to get the person back into society as a “normal” person, proving they can still do what they did prior to the injury. So much effort goes into this “normalization” that learning to live with the disability responsibly can take secondary status. The wonders of youth gives many people approximately ten years of dodging the bullet before the body and mind begin to show the wear. Shortly

after, the years of chronic pain become more difficult to handle, the skin and muscles are more vulnerable to breakdown, and the isolation that occurs when treating a pressure sore leads to hopelessness, isolation, and depression. It is a vicious cycle once it begins — if it is allowed to begin. The initial structure and encouragement that was reliably present at the time of injury begins to decline. After years of buying into The Stigma, the person with SCI can find it difficult to accept the new challenges, seeing failure rather than a normal process of aging with spinal cord injury. It is no different than for any other disease process that must be regularly managed. When the condition is misunderstood — or ignored — it will certainly progress. The tragedy of this is that it truly is possible to live a productive, meaningful, happy life after spinal cord injury without having to go through that process. With proper body mechanics, a healthy realistic idea of what is possible, and good medical attention and follow-up, a healthy, happy, long-lived life is easily within reach. Unfortunately “The Stigma” prevents us from doing what is responsible and admitting to the able-bodied community what our true struggles are. This is further amplified when the able-bodied community views people who get on with their lives as heroes. Some people enjoy the accolades — fueling their habits of denial — while others find the inspiration label condescending.

7

hopeful change in perspective that is important for the eventual full inclusion of those with disabilities within our culture. This implies rejection of the moral and medical models of disability and embracing the social model wherein disability is interpreted as a social construct, in part created by language and imagery. The aforementioned aberrant uses of language do not reflect the highest potential of being in the world with a disability. In contrast, they reflect a devaluation and critique of the experience, not an absolute value of the possible. Language is an important foundational element in the formation of one’s behavior and consciousness. One of the communal missions of the disability community and rehabilitation professionals is to assist in augmenting quality of life. Our pursuit is one of wholeness and integrity of the self. Our attentiveness to language is just one of many important variables toward this goal, namely the end of marginalization, bias, prejudice, isolation, and phobic separatism. This and other similar efforts are serving to help create a society that, through its thought and actions, may eventually epitomize recognition, affirmation, inclusion, individuality, and respect of differences for all its members. Lester Butt, Ph.D., ABPP is the Director of the Department of Psychology at Craig Hospital in Englewood, Colorado.

Life is challenging in all areas and not until we are honest about our daily struggles will people be able to understand our needs and implement programs and legislation to ensure our continued success. As stated in the NSCIA motto, life is not “over” with a spinal cord injury, it is “different”; and unquestionably possible to live a long and meaningful life. It’s impossible to understate just how difficult it can be for us and our families. We fear that SCI scares able-bodied people away, concerned that showing our vulnerabilities will lead to discrimination — and unfortunately this has happened. However, a spinal cord injury is a serious injury and life doesn’t change a little — it changes dramatically. We must be truthful with ourselves about the challenges we face so we can get the proper support and legislation we need to deal with them that will make it possible for us to lead the lives we are so capable of — and leave The Stigma behind forever.


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March/April 2006

bac

SCIENTER: SCI Enter Corporate America By Tari S. Hartman-Squire, NSCIA BAC Board Liaison

T

he dictionary defines “scienter” as “full knowledge or awareness.” BAC members with SCI epitomize “SCI-enter” — rolling up executive ranks of corporate America in the retail, information technology, automotive, and travel sectors, raising full knowledge and awareness along the way. You have probably benefited from their achievements at work, school, shopping, or travel. Meet Michael Takemura, Director, Hewlett-Packard (HP) Accessibility Program Office; Gary Talbot, Senior Project Engineer for ride show engineering at Disney, U.S. Access Board member, and founder of General Motors (GM) Mobility Engineering; and Deidre Davis, Director of ADA Services, Wal-Mart, and former presidential appointee with the State Department. Outside of HP, Michael is on the board of the American Association of People with Disabilities (AAPD), and the CSUN (California State University at Northridge) Center on Disabilities. He views his community leadership role as an opportunity to raise disability awareness. He is proud of HP’s recent da Vinci Award from the National Multiple Sclerosis Society of

Money Follows the Person Continued from page 1

going to eat me alive. “Now I’m attending New Mexico Jr. College in their paralegal program,” Harris explains. “It’s wonderful, and I want to use my education to fight discrimination against people with disabilities.” MFP — or Senate bill S.1932, Subchapter B Sec 6071 — will take effect in 2007 and end in 2011. Its stated purposes are to: 1) increase the use of home and community based services; 2) eliminate barriers to receiving community services in the setting of one’s choice, and; 3) allow states that receive the funds to continue to provide services to those who choose to transition from the institution to the community. The federal government will issue RFPs (Request for Proposal), and states will compete for the demonstration program funds. Preference will be given to states that deliver consumer-directed services as opposed to home health agency management, and to states that serve cross disability populations. Individuals are eligible to receive MFP services if they have lived at least six months in a nursing facility, intermediate care facility for the mentally retarded (ICFMR), or institution for medical disease receiving Medicaid benefits. The seeds of MFP were first planted 15 years ago by ADAPT, a national disability rights group. In 1991, ADAPT first pro-

Michigan, and U.S. Department of Labor’s New Freedom Initiative Award. Gary Talbot was appointed to the U.S. Access Board by President George W. Bush, chairs their SAE Adaptive Devices Standards Committee, and served on executive boards of the Independent Living Center in Ann Arbor, and Michigan Hardof-Hearing Association while at GM. Deidre is on the Board of Mobility International USA, National Minorities with Disabilities Coalition, Howard University Research and Training Center, and National Women’s Party. She was instrumental in gaining approval to make the historic Sewall-Belmont House in Washingotn, D.C. fully accessible. At the State Department, she helped make worldwide embassies accessible. None of their essential job functions needed alteration. All joined the BAC to learn best practices to motivate their own companies, spark increased employment and/or marketing opportunities, network and improve lives of people with SCI and other disabilities. What do people with SCI uniquely offer the world of business? All three answered “we’re problem solvers.” Deidre says, “I’m not trying to be cliché, but we have an ability to find another way to get things done, keep our eyes on the prize, and have a real ‘can-do-ness’ based from whence we became disabled, in childhood or from trauma.” Gary agrees, “We have to solve problems to get out of bed, live independently, pilot a vehicle. We are problem solvers by nature and that is a huge advantage in business.” Michael believes, “Our personal lives don’t allow for wasting time or energy. We have strong teamwork skills, are results-driven and efficient in accomplishing tasks.”

Convincing Supervisors SCI was NOT a Limitation

wide marketing for six years, Michael’s current responsibility at HP is accessibility. He constantly indoctrinates upper management as executives move positions. From the inception of Deidre’s work at Wal-Mart, her goal has been to increase employees with disabilities, establishing partnerships with recruitment, supplier diversity, global procurement — to inject disability outreach in everything. Gary is encouraging Disney to proactively market with the whole disability community and believes Disney is the best-kept secret. All are affinity group members and helped facilitate its vision and mission. Gary started GM’s, which is a role model for Disney. Each group has a different name, (Wal-Mart is “Associates with Disabilities Resource Group,” Disney is “CastAble,” and HP is “Employee Resource Group”), but all illuminate a disability-inclusive diversity policy. All have spearheaded Disability Mentoring Day (DMD). Deidre brought it to the State Department (where former Secretary Warren Christopher hosted an event). Wal-Mart is expanding store participation with a home-office intensive day-long program. Gary helped to start Kansas City DMD, and is encouraging Disney to participate. Michael has driven HP’s efforts to over eleven countries with year-round activities. One of his first students with SCI (now an HP employee) is seeking his advice on how to mentor. Our BAC members are devoted to a life of service. As Gary Talbot says, “we are rolling subject matter experts for accessibility and inclusion.” NSCIA is lucky they are guiding us to better do business with business.

posed the MiCASSA: the Medicaid Community Assistance Services and Supports Act. “MFP is a concept that is encapsulated in MiCASSA,” says Bob Kafka, a national organizer for ADAPT who sustained a C5-6 SCI in 1973. “Six years ago, ADAPT led a protest in Washington, D.C. We demanded a meeting with the head of the Office of Management and Budget,” Kafka explains. “The administration sent Mitch McClellan who now heads the Centers for Medicare and Medicaid Services (CMS), resulting in 1.75 billion dollars being included in the President’s budget for MFP. It went nowhere. But in each of the last five years, MFP has been introduced as standalone legislation, and we’ve continued quarterly meetings with McClellan.” Kafka notes that it takes time to build political will for legislation, but the fact that MFP is finally in the budget as a demonstration project shows that the disability community can succeed with persistent advocacy. According to Kafka and other policy experts, the disability community needs to build the political will to overhaul the longterm healthcare system for all people with disabilities. “ADAPT focused on low income because it was doable in the here and now. But we are building what will be part of the long term care system for people with disabilities at all income levels,” he stated. As it stands, MFP programs will be available to those people who are income eligible for Medicaid except in states that have a “Medicaid Buy-In,” where people

with disabilities with higher incomes can purchase services. Currently people need to lobby their State through administrative procedures or legislation to put the Money Follows the Person concept in place, and get a commitment from their Governor and Medicaid Director to compete aggressively for MFP dollars. Some states, because of extensive advocacy efforts, are ahead of the game. Texas, New York, and Pennsylvania already work aggressively to get people out of institutions and using community-based services. In a delightful coincidence, the New Mexico state legislature passed MFP legislation on the same day it passed the federal Congress. As SCILife went to press, the bill had just been signed by Governor Bill Richardson, in response to intense disability community lobbying. Jim Parker has played a major role in implementing New Mexico’s current community-based waiver programs and was active in the MFP campaign. Parker, a long time activist with SCI, is Coordinator of Real Choice System Change for the State of New Mexico’s Department of Aging and Disability. New Mexico has 360,000 people with disabilities who are Medicaid eligible and estimates 25% with SCI. Data indicates that over 2,400 people in the State of New Mexico want out of nursing homes. Parker thinks that figure is low. “That’s the initial figure. Once people understand what is available and when more people get out of institutions, more people will use

MFP,” he states. Like many in the SCI and disability community, Parker has seen extraordinary advances for people with disabilities since the ADA was signed into law in 1990. “Much of the discrimination now is because of continuing stereotypes and myths about disability,” he notes. Money Follows the Person and further changes in the country’s long-term healthcare system have the potential to integrate more people with disabilities into the community. Ultimately, that is what will change public attitudes.

“For supervisors and colleagues not well-versed about disability,” says Deidre, “there’s always a learning curve to educate them about independence and empowerment. But there’s never been a limitation at Wal-Mart or the State Department. My main reasonable accommodation is a personal assistant for travel. Wal-Mart was absolutely open, no reservations.” Michael felt with previous employers that there may have been a glass ceiling into executive ranks, but not at HP. “Throughout my career, supervisors saw me as an asset to the team. Performance reviews and promotions reinforced that my SCI was not a limitation. Earlier in my career I felt I had to be ‘Superman,’ but as I matured through my career, I learned I didn’t have to save the world.” Says Gary Talbot, “That happens almost daily at Disney (and GM) because of the type of engineering work I do — there are very few engineers with disabilities. You have to prove yourself, even when people say it’s not an issue. Coming from an industry not regulated by ADA to an industry that is, is the big difference. At GM, I started an engineering function to make vehicles more accessible for people with disabilities and seniors — there were no ADA Accessibility Guidelines. However Disney is “guest focused”; guests with disabilities are a subset of the larger population. All our enterprises are covered under ADA: cruise ships, theme parks, swimming pools, hotels, restaurants. It’s great to work here.” All three enlist high-level support for marketing with and employment of people with SCI/D. After successful roles in world-

STATE BY STATE DATA In the third quarter of 2005, the federal government reported that over 285,000 residents of nursing home facilities across the U.S. indicated they wanted to get out and live in the community. To learn how many people choose communitybased care in your state, go to: www.spinalcord.org/statedata From the dropdown list, select: “MDS Q1a Report” and then click “Submit.” Another screen will appear. Select the “quarter” you want from the list and then click “Submit.” The State table appears. You can also click on the state name and get the data broken down by counties.


March/April 2006

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chapter report

11

Look for

Cushioning Katrina Old Dominion Sends Supplies By Steve Fetrow, Old Dominion Chapter President

six times a year in 2006!

I

n September, the Old Dominion Chapter of NSCIA shipped, at no cost, a total of thirty-eight wheelchair cushions to LIFE of Central Mississippi, an independent living center (ILC) serving the needs of those with physical disabilities. The cushions, with a retail value of over $11,000, were distributed to those who had lost much of their durable medical equipment during the ensuing evacuations as a result of hurricane Katrina. As a follow-up effort, in November, ODC/NSCIA started a donation drive where members donated unexpired, unused intermittent catheters, condom catheters, latex gloves, sterile lubricants, saline solution, and disposable bed pads. They were only accepted in their unopened, original packaging. More than two large shipping pallets-worth of supplies were quickly donated by members. Thanks to the resources found at the katrinadisability.info web site set up in response to the emergency, I contacted several Gulf Coast independent living centers in my role as ODC/NSCIA president. I inquired about their respective needs for these costly supplies. Mack Marsh, director of the New Horizons ILC, located in Shreveport, Louisiana, expressed the greatest need. The Old Dominion Chapter also had a

Dana Reeve Continued from page 1

Friday, March 2 and, quoted by the Associated Press, said she was, “tired, but with her typical sense of humor and smile, always trying to make other people feel good, her characteristic personality.” Dana Morosini Reeve was an actor and singer who met Christopher Reeve in 1987 while appearing together in summer stock at the Williamstown Theatre Festival in the Berkshires in western Massachusetts, on whose board she sat. They were married in 1992, and one year later had their first and only child, son Will, now age 13. She was also a board member of the Shakespeare Theatre of New Jersey, The Reeve-Irvine Center for Spinal Cord Research, and was an advisory board member to the National Family Caregivers Association. She was named Mother of the Year in 2005 by the American Cancer Society. Dana Reeve had appeared on television in Law & Order and the long-running soap opera All My Children, and had performed on Broadway. She was in California performing in the Broadway-bound play “Brooklyn Boy” when Christopher died.

From left to right: Steve Fetrow, Jason Blackwell, Michelle Meade, Michael Chenail, Keith Enroughty, Shawn Floyd, Quincy Umphlette. supply of brand new wheelchair cushions on hand from an existing program, begun in November, 2004. 180 cushions had been donated to us by the Chesterfield County, VA Disability Services Board — products they had received from another donor but had been unable to distribute. We took on the task. A number of the cushions were plain foam, so were unacceptable to those with the pressure relief needs of people with spinal cord injury. We donated them to local nursing homes. The remaining cushions — memory foam, Jay, and Roho types — were given to people in need on a first come first serve basis. We also gave preference to those without a cushion or with no coverage for one. When we learned of the need in the Gulf Coast area, we decided that the highest priority was to send them our remaining supply. A small team then met the next day to package, label, insure, and ship the cushions to LIFE of Central Mississippi. We covered the cost for shipping the cush-

ions out of our existing funds. The cost of shipping the donated medical supplies was not within Old Dominion’s budget, so a search began to locate a shipping partner. I contacted FedEx/Kinko’s Libbie Place location in Richmond, VA. Senior Center Manager Kathy Johnston readily agreed to cover the cost of shipping the supplies to Shreveport. Shawn Floyd, ODC/NSCIA’s Executive Director, gathered a team of family and friends the day after Christmas to transport the supplies from storage to the Kinko’s FedEx location. Ed Beach, FedEx/Kinko’s Shipping Specialist, processed the thirty cases of supplies, which were shipped the same day. The Old Dominion Chapter is very glad to have found homes for the supplies we had available, and that we were able to make what contribution we could at a time of such serious need to people with spinal cord injury whose lives had been so seriously affected by this historic natural disaster.

She gave up the role, but stated her clear intention to return to acting, saying, “I do have to make a living.” Given her role as caregiver for Christopher — whose high-level quadriplegia required near-continuous support

Christopher & Dana Reeve Paralysis Resource Center (PRC). Since its inception in 1999, the Quality of Life grants program has awarded more than $8 million to support programs and projects that improve the daily lives of people living with paralysis. The Reeve PRC is a leading national provider of SCI information and support, owing its existence to Dana Reeve’s persistent lobbying in the U.S. Congress to win federal funding for the program based in Short Hills, New Jersey. Says NSCIA CEO Marcie Roth, “Dana always reminded everyone about the importance of focusing on the real needs that people have here and now. She was accessible and easy to talk to,” says Roth. “She clearly shared our passion for the rights and opportunities of people with disabilities and their families to gain access to the supports and services that make meaningful community participation possible.” She is survived by her father Charles, who is a doctor, two sisters Deborah and Adrienne, and two stepchildren, Matthew and Alexandra. Will — having now lost his father, his maternal grandmother, and his mother, all in the span of 18 months — will live with the family of a close friend,

from others — Dana was particularly conscious of the daily demands on people with SCI and their family members. Where Chris’ attention was focused on raising money and political advocacy in the interest of SCI research, Dana put her energies into quality of life issues. She established the Reeve Foundation's Quality of Life grants program and the

NSCIA is adding more value to your membership! In 2006 you'll find SCILife in your mailbox every other month, up from four quarterly issues.

If you are not already a member, join NSCIA today – it’s free! Visit www.spinalcord.org

allowing him to remain in his community. “NSCIA will always appreciate Dana’s leadership and the precious but too brief opportunity we had to work collaboratively with her toward our shared goals,” says Marcie Roth, “We know that her work will be carried on through the continuing programs of our valued partners at the Christopher Reeve Foundation.”


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March/April 2006

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March/April 2006

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March/April 2006

Finding an Architect for a Universal Design Home By Rosemarie Rossetti, Ph.D.

S

ometimes life suddenly changes direction. A spinal cord injury on June 13, 1998 caught me by surprise during a bicycle ride when a 3-ton tree came crashing down on me. My husband, Mark Leder, and I built our dream home in 1995. We expected to live there for an unlimited time, but it has become more of a nightmare; of stairs that I can’t climb, cabinets beyond reach, and bathtubs that I can’t enter without assistance. Since my injury, we have been planning to build a home that would better accommodate both of us. I had seen a magazine article on Universal Design (UD) — a framework for the design of places benefiting the widest possible range of people in the widest range of situations without special or separate design. Encouraged by the concept, I devoted my time to research, including trips to the library, Internet searches, speaking with others who used wheelchairs, and a visit with our independent living center (ILC) director. We visited homes built by wheelchairs users and took extensive notes on what features limited accessibility for the owners and which features worked well. After months of information collection, Mark began to sketch out a floor plan for our new house. The process began with choosing a location. We drove around the section of town where we wanted to live and found a new subdivision. Two builders had several lots available. Each builder had only one ranch-style floor plan to offer. We

became discouraged; these homes did not meet our needs. Based on referrals, we decided on C.V. Perry to be our builder, who told us we could modify his existing floor plan by erasing all interior walls and redrawing a new floor plan within the original house footprint. So we put a deposit on a lot. Mark and I quickly became overwhelmed with the design process, so began our search for an architect. We contacted the ILC and Bureau of Vocational Rehabilitation for architect recommendations. Our builder also recommended an architect who, when asked, “How would you approach the design of the kitchen for our universal design home?” answered, “I would let the cabinet company lay out the floor plan.” He clearly had no experience with Universal Design, and simply wanted to delegate the whole task. A second recommended architect sent me his resume and summary of completed projects. I asked for his references and called three of them. One of them, a woman who had hired him to remodel her bathroom, said that she was still not able to reach any of the electrical outlets. A third architect was located out of state, making face to face conferences too difficult and costly. We interviewed a woman who had designed her home using UD features, but she was not an architect. Our project needed a registered architect to officially “stamp” their seal on any final plans. A colleague recommended architect Patrick Manley to me. Manley came to our home with his construction manager, Cathy Van Volkenburg. He brought us his reference list and described previous projects where he worked on ADA-compliant housing projects, as well as residential Universal Design. I called his three

Rosemarie Rossetti, center, and her architectural team.

references and got glowing reviews. We had our man! Over the next few months, we held meetings with Manley and realized we were spinning our wheels trying to “shoehorn” our space needs into the builder’s existing footprint. The only logical solution would be to start from scratch. The house was designed from the inside out. First we positioned rooms in relation to each other. Then we sized each room based on our furniture placement and pathways of travel, allowing for my wheelchair, and keeping square footage to a minimum. We considered “point of use” when locating appliances. Finally, the exterior shell of the home was detailed. We avoided space wasters like a too large foyer. I needed help comprehending the architectural symbols on the blueprints, where I saw several red circles, and asked Manley what they represented. “Those are five foot diameter turning dimensions for your wheelchair,” he responded. At times it was difficult for me to

envision the layout of rooms. Symbols for the kitchen appliances had to be explained. When I needed more explanation, Manley would draw a sketch of the elevation. We constantly reviewed my need for access to storage areas and work surfaces — especially in the critical kitchen and bathroom areas. To give these rooms expert consideration, we hired kitchen and bath universal design specialist, Mary Jo Peterson. The completed floor plans will be soon handed over to the builder for construction. Our home will serve as a national demonstration Universal Design Living Laboratory to bring about awareness of Universal Design to the building industry and the public. Rosemarie Rossetti, Ph.D. is an internationally known speaker, trainer, consultant, and writer. Rossetti is building the Universal Design Living Laboratory, in metropolitan Columbus, Ohio. She can be reached at 614.471.6100, or Rosemarie@UDLL.com. Visit www.UDLL.com for more information.

IMPORTANT SCI SUMMIT UPDATES

To the Family and Friends of Dana Reeve

Dates for the 2006 SCI Summit ™ have been changed to

As we join you in mourning the death of Dana Reeve, those of us in the National Spinal Cord Injury Association family deeply appreciate that we have also been able to share in the work she was so deeply committed to. Dana shared our passion for the rights of people with SCI/D, their families, and caregivers, and their need to gain access to the support and services that make meaningful community participation possible. She was a national force in working toward many of our shared goals. Through the Christopher Reeve Foundation she directly supported our efforts and those of our other partners in the SCI/D community. Dana was a lovely and gracious person. We will always remember her commitment to the quality of life issues faced by people with paralysis and their families, and we are thankful for her leadership in creating the Christopher Reeve Foundation and the Christopher and Dana Reeve Paralysis Resource Center. Our hearts go out Dana and Christopher's son, Will, Christopher's children Matthew and Alexandra, and their entire family. We also offer our condolences to Kathy Lewis, Michael Manganiello, Tricia Brooks, Joe Canose, Sam Maddox, and the rest of the Christopher Reeve Paralysis Foundation team. While we mourn her passing, we will continue to celebrate and draw inspiration from her life in the years ahead.

October 29 – November 1, 2006 at the Hyatt Regency, Bethesda, MD The SCI Hall of Fame ™ induction ceremony will be held at the John F. Kennedy Center for the Performing Arts on the evening of Monday October 30th.

JUST ADDED

NSCIA partner National Rehabilitation Hospital will host their Rehabilitation Research and Training Center (RRTC) on Spinal Cord Injury: Promoting Health and Preventing Complications Through Exercise State of the Science Conference in conjunction with the Summit from November 2-3, 2006 at the Hyatt Regency in Bethesda, MD.

Visit www.spinalcord.org and www.sci-health.org for details

With all our hearts, The Staff and Board of National Spinal Cord Injury Association


March/April 2006

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March/April 2006


March/April 2006

for the family Family Change after SCI A Tool That Can Help By Jeffrey Kreutzer, Jennifer Menzel, and Nancy Hsu

A

fter SCI, the sole focus of rehabilitation staff and family members is on the needs of the person with the injury. With such a great focus on the patient, family members often lose sight of their own well-being. Well-meaning friends and family members sometimes unknowingly add pressure by encouraging self-sacrifice, leaving caregivers' basic needs unmet. Research shows that family members who serve as caregivers face many difficulties after injury, commonly feeling emotionally overwhelmed and frustrated, worn out by the increasing number of responsibilities they have taken on. Caregivers are understandably upset by their loved one's suffering, loss of abilities, and need for complex medical care. Aside from financial concerns, many worry about their ability to provide quality care and whether family life will ever return to “normal.” Sadly, some caregivers lack confidence in their ability to live up to their own — or others' — expectations. As a family caregiver, you may be wondering how you can stay healthy and emotionally strong in the face of so many challenges. There is no doubt that family members play an important role in rehabilitation and recovery. Unfortunately many family members neglect their own personal needs because they feel that their injured family member deserves no less than 100% of their attention. If you are a family member, you need to take care of yourself. Allowing yourself to become emotionally and physically

exhausted will make it very difficult to support others in your family — including the person with SCI. You will have greater difficulty making important decisions and absorbing, processing, and integrating all kinds of new information. Being exhausted and overwhelmed can lead you to feeling depressed and discouraged. Do you take a few minutes to exercise on a regular basis? Even a short walk around the neighborhood can do much good. Are you spending time with friends? Sharing a lunch or snack with a friend offers a chance for a healthy break. Taking time to see a good movie with a friend is not just entertainment — watching a good film offers a chance to feel good emotions and reach important understandings about your life and the lives of other family members. Be careful about becoming overwhelmed by fear, worry, discouragement, and other negative emotions. Keep in mind that your distress can also have a negative impact on other family members. Injury has the potential to change the life of everyone in your family. If you fail to care for yourself, you and other family members may have far greater difficulty adapting and adjusting to the many life changes imposed by SCI. We have learned that the first step in becoming emotionally strong involves recognizing how your life and the lives of other family members have been affected by the injury. Recognizing the full scope of important family life changes can help you maintain your intellectual and emotional balance. Recognizing change is also a step toward improving family communication, allowing you to work together more effectively and better meet everyone's needs. To help people recognize and think about life changes, we have developed a tool, the Family Change Questionnaire (FCQ). The FCQ consists of seventeen questions relating to topics such as feelings at the time of injury, fears about long-term injury effects, and the emotional reactions of other family members. The FCQ also asks people to think about changes in their responsibilities, roles, transportation needs,

Disability and the Psychology of Self-Views In a World of Ambiguity, Know Thyself By David S. Boninger, Ph.D. NSCIA Board Member

A

s we think about ourselves and observe our behaviors and our successes and failures over a lifetime, we form opinions about ourselves — self-views about who we are. We have self-views on just about every conceivable topic including how likeable we are, or how attractive, intelligent, skilled, or desirable we are. These self-views are immensely more important than most of us realize. They influence the decisions we make, the careers we choose, the friends we seek out, and the overall self-esteem and self-worth that we attach to ourselves. So where do we get these all-important self-views? We get them by observing ourselves. And, we get them by observing and

interpreting what others say and do as it relates to us. Psychologists refer to this as the “looking glass self ” or as “reflected selfappraisal” because our self-views are determined, at least in part, by how we interpret what is reflected back at us when we observe how others are behaving toward us. But if we learn about ourselves through others, what happens when those others have motivations and biases that make it difficult to interpret their behaviors or trust the accuracy of their judgments? For example, a very wealthy woman might have difficulty interpreting the behavior of a new man she’s been dating because she may be unable to judge whether his positive behavior toward her is because she is wealthy or because he genuinely thinks she is a likeable, desirable person. This woman is experiencing what psychologists call “attributional ambiguity.” Because the woman may be less able to attribute (i.e., assign cause

finances, and plans for the future. Please take a look at the FCQ questions and answer them for yourself. Ask others in your family to think about how they would answer the questions. Please share and discuss your answers with other family members in a comfortable setting. In our experience, the FCQ has been a useful tool, helping people recognize that the lives of more than one family member has been affected. Discussing your answers to the questions will help improve understanding and communication. Regular discussion of feelings and ideas amongst fam-

17

ily members undoubtedly strengthens the family support system and helps people successfully overcome challenges on the road to recovery. Jeff Kreutzer, Jennifer Menzel, and Nancy Hsu provide clinical services to families and persons with disabilities in the Department of Physical Medicine and Rehabilitation at Virginia Commonwealth University Medical Center in Richmond, VA. Their research on family support interventions is partly funded by the National Institute on Disability and Rehabilitation Research (NIDRR).

THE FAMILY CHANGE QUESTIONNAIRE The FCQ, presented below, can be used in several different ways. We encourage you and your family to fill in the questionnaire and discuss your answers. If you are in counseling, your counselor can use the questionnaire as a tool for individual, group, and family sessions. Usually, this can be completed in 20 minutes or less. 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13.

14. 15. 16. 17.

How did you feel when you first learned that your injured family member was injured? How did you feel when you realized that your injured family member was going to live? How did you feel when you began to recognize that the injury might have long-term effects? How have other family members reacted to your injured family member’s injury? Have you made yourself available to provide more emotional support to your injured family member and other family members? If yes, how so? Before the injury, what were the most important plans you had for your future and your family’s future? How has the injury affected your plans for the future? What responsibilities do you now have to care for your injured family member? In what ways do you help your injured family member get back and forth to appointments? Do you attend therapy and doctors’ visits with your injured family member? Please explain. Do you help your injured family member with filling out insurance, registration, medical, and disability forms? Please explain. Do you help your injured family member get authorizations for medical and rehabilitative care? Please explain. Have you taken over responsibilities from your injured family member or uninjured family members? If yes, what new responsibilities do you have related to caring for the house, maintaining the car(s), working, paying bills, and caring for children? Have you changed your work responsibilities or hours since the injury, so that you could help your injured family member or the family? Please explain. How has your family’s income been affected by the injury? What new expenses are you facing because of the injury? How have your sports, social, and recreational activities changed because of the injury?

for or explain) the man’s behavior, she may be less able to confidently say, “He likes me because I’m a great person to be around.” When this happens, the “positive reflection” gets lost and there is little boost to the woman’s self-esteem. In contrast, a less wealthy woman may be more confident in the motivations of her dating partner and would be more likely to derive satisfaction and “self-benefit” from his positive behaviors. People with disabilities — especially visible ones — experience attributional ambiguity every day. “Is it about me or about my disability?” The examples are many: “Is she helping me because she thinks I can’t do it, or because she just wants to show positive regard for me?” “Did I get this job because I have valuable skills, or because they need to hire a token person like me?” “Is he behaving kindly toward me because I’m a desirable friend to have or because he ‘pities my plight’?” And it cuts the other way too: “Did I fail to get the job offer because I have a disability or because I just didn’t have the skill set?” “Is he giving me poor job ratings because he thinks that a person with a disability

shouldn’t be doing this job, or because I’m really not performing well?” Ambiguity as we try to interpret others’ behaviors toward us is a two-sided coin. On the one hand, it may prevent us from fully benefiting when we experience the positive behaviors of others; “Maybe it’s not about me, but just about my disability.” On the other hand, it may allow us to minimize the harmful impact of the negative behavior of others; “It’s not about me, it’s just about my disability.” Others’ behavior is sometimes biased and inaccurate. Stereotypes and prejudices toward people with disabilities influence how they are perceived — often leading to more extreme positive or negative evaluations. We all know examples of positive extremes: A person using a wheelchair who is successful is perceived as an “inspiration” and “courageous” and more talented than an able-bodied counterpart who rose to the same level of success. But embedded in this positive extreme is a “negative stereotype” that assumes the person in the wheelchair is less able at a given task to begin with. Continued on page 20


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March/April 2006

board member profile

David Boninger

In the Business of Service to People with SCI By Richard Holicky

Holdings, a company that transfers advances in rehab technology from the lab to the marketplace and is dedicated to using these advances to create products that enhance the mobility, independence, and well-being of people with disabilities. “My involvement in NSCIA is also part of what our company is about — staying in touch with the SCI community. Being close with the people who use our products is a great source of knowledge — the kind of knowledge that drives innovation, which is something that we are always striving for.

W

hen a member of NSCIA’s board asked David Boninger to get involved with the association in the fall of 2002, Boninger jumped at the chance and hasn’t looked back. The biggest winner has been NSCIA. “Paul Mortenson, NSCIA board member, knew one of my strengths is an expertise in writing grants and successfully obtaining funding,” says Boninger, who holds an M.A. and Ph.D. in social psychology from Ohio State University. “My initial attraction to NSCIA was the opportunity to get involved with the community. Once involved, I totally bought in to the association’s mission,” Boninger continued, “but I also found myself growing more and more committed to the people involved with the organization. These are quality, good people, and I very much enjoy the opportunity to work with them toward worthy goals. “I like the work NSCIA is doing. I like the mission; I like the people; so being involved has been rewarding for me. I hope I can help the association get where it wants to be. Boninger is a partner in Three Rivers

legal

Avoiding Liability Using Personal Assistants By Len Zandrow, NSCIA General Counsel

T

he U.S. Department of Labor projects that Americans will employ 433,000 more personal assistants, or “PA”s, for home-based services by 2008, an increase of 58% over current levels. A PA can help individuals with SCI become more active and independent and to realize their goals. Like any other resource, however, assistants need to be properly managed to gain the greatest potential benefit, and to avoid legal pitfalls.

Hiring the Personal Assistant

Hiring assistants through agencies is costly and affords less control over the process. Hiring them directly places you in

Three Rivers focuses on wheelchairs and wheelchair users and presently offers two products designed specifically for wheelers and one for use by clinicians. The Natural-Fit is an ergonomic handrim that eliminates pushing on the tire, provides a better, more natural push, reduces hand and wrist pain, and provides better braking control. The GameCycle is a stationary handcycle that combines the the daunting and probably unfamiliar role of being an employer. Either way, before retaining anyone, you should make a thorough inventory of your personal needs and desires. What personal care or homemaking services would you like? Your inventory will help frame advertisements for the position, any expectations that you create during the job interview, and any written contract you ultimately execute. Based on your inventory, you should also be able to determine the assistant's qualifications, requirements, and wages. Regardless of the skill level required, any candidates should meet certain minimum criteria. They should: 1. be at least 18 years old (you cannot execute a legally enforceable contract with a minor); 2. possess a valid social security number (required for withholding or social security taxes); and 3. possess a driver's license and authorize you to perform a criminal check — local police will investigate a candidate's background for you. Ask job applicants for at least two professional references. Be careful how you frame questions; it is illegal to ask candidates about their ethnic origin, nationality, race, political beliefs, or source(s) of income. Ask only what affects their ability to perform the essential functions of the job. For example, you may not legally ask candidates if they are married or have children, but you may ask if work on weekends or holidays would pose a problem. You may not legally ask if candidates have a disabili-

Nintendo GameCube racing games experience while getting a great upper body workout. The SmartWheel is a tool for wheelchair clinics that helps them analyze wheelchair propulsion and measures how people push. Summaries of that data assists clinicians with wheelchair comparison and selection, justification for insurance reimbursement, and training users in how to properly and most efficiently push the chair. Prior to founding Three Rivers with his brother Ron and Chris Willems, Dr. Boninger was a professor of psychology. He has extensive experience in survey research, is an expert in research methods and statistical analysis, and has served as a consultant in both capacities. He taught and conducted research in the areas of social perception, persuasion, and consumer behavior for over ten years, first as a graduate student at Ohio State, and then as a professor at UCLA and at the University of Haifa in Israel. “My brothers and I had always talked about what fun it would be to own a company together. When the time came, Ron and I were game for it. My other brother, Michael, liked what he was doing too much to leave it. He is an M.D. in physical medicine and rehabilitation and a leading researcher at the University of Pittsburgh (with SCI Hall of Fame member Rory Cooper). Although Michael wasn’t interested in joining the company, he suggested we take the wheelchair technology they had developed in the lab and bring it to market. The rest is history.” David’s primary area of interest with NSCIA has been with the Development Committee because of the committee’s work with grants and fund raising. The grant-writing part is a natural, as Boninger has acquired substantial federal grant funding for new

product development including grants from the National Institutes of Health (NIH) and the National Institute on Disability and Rehabilitation Research (NIDRR). He’s also presently providing advice relating to a direct mail fundraising campaign. He sees the fundraising as a networking process, reaching out to his network of relationships and locating people and companies who would be interested or benefit from a relationship with NSCIA. Though his primary contribution may focus on helping the association reach long-term financial stability, he gets rewards and benefits from other areas as well. “I know we do good work on the national level,” says Boninger, “helping those impacted by hurricane Katrina, and drawing attention to relevant issues like healthcare and misguided attitudes toward disability, such as those portrayed in the film Million Dollar Baby. But just as much,” he continues, “I enjoy getting to know local chapter members from all over the country. Some of our best work is done on the local level. A while back my child’s teacher asked me for some help for a friend in Chicago who had sustained an SCI. I was able to direct them to their local NSCIA chapter — within days they received assistance. I was really heartened to see how quick and helpful the response was.” “The activity and volume of calls that the NSCIA Resource Center gets is another example of the important, day-to-day work that NSCIA is doing that has an impact at the individual level. The best organizations are those that can provide a national voice, while also remaining active and meeting needs at the local and individual level. This is what NSCIA is always striving to achieve and I think it’s great!”

ty or pre-existing health condition, but you may inquire whether they could help you transfer from a wheelchair, for instance. You may not ask candidates their age, but you may obtain assurance that they are eighteen years or older. If you extend a job offer, you may want the assistant to sign a written contract, which should specify job duties, hours of work, days off, wages, and possible grounds for termination. The grounds for termination should be broadly phrased to permit discharge for any reason within your complete discretion.

necessary for compensation and tax purposes; you may want the assistant to sign time sheets. The nature of assistant work often blurs the lines between supervisor and employee. PAs might be involved with private, sensitive aspects of your life. You need to keep in mind how your interactions with your assistant may be perceived. To protect yourself from possible liability, you must avoid — and refuse to condone — any conduct that could be considered sexual harassment or abuse.

Managing the Personal Assistant

Best-laid plans do not always work out, so be prepared for the possibility that a PA will leave your employ. If you initiate the separation, make sure you first provided the assistant prior feedback about his or her job performance. Give your PA an opportunity to improve. If the employee has not been able to improve, then you may wish to terminate him or her. Unless your employment contract provides otherwise, PAs are generally considered “at will” employees and may be fired at any time for any reason, so long as the reason (for example, unlawful discrimination or retaliation) does not offend public policy. If a terminated employee might get upset and leave immediately, you should plan for a backup. If there is a chance that the employee might become angry and put you at risk,

After hiring an assistant, provide proper training to clarify duties and performance standards. Proper training may also protect you from liability to third parties if the assistant negligently injures another while on the job. Orient the assistant with a tour of the house, showing where supplies and equipment are kept, and discuss your disability and any specific health-related issues. Inform the assistant of any safety guidelines for disability-related equipment or household appliances. Discuss whether the assistant has the right to use any personal items in the household and your ground rules for privacy and confidentiality. Whether you hired the assistant directly or used an agency, you are considered a supervisor and will be expected to direct the PA’s work. Accurate record keeping is

Firing the Personal Assistant

Continued on page 20


March/April 2006

employment

Hey Man, What’s That Sound? By James LeBrecht

I

’ve always loved sound. One of my earliest recollections as a small child was my father’s Hi-Fi. I used to crawl inside the custom built cabinet to see the tubes glowing from the tuner and amplifier. Today, I create and mix sound for all sorts of projects: feature films, documentaries, music, video games, theater, museum installations, and trade shows. What I do is commonly called “post-production” sound. I was born with spina bifida, from which I’m paralyzed from the waist down. I grew up in the suburbs to the north of New York City, using a push chair since I was old enough to reach the tires. My parents didn’t move out of our split-level house, so I learned to crawl up and down stairs. This skill would come in handy when, as a college student, I decided to make designing sound for theater productions my career. My father wanted me to become a lawyer because “they sat down a lot of the time.” To his credit, when I told him I wanted to become a drama major,

he said “Fine. As long as I don’t have to buy you a Tutu.” And I wonder where I get my sense of humor. Sound for theater was a physically challenging profession. A lot of theaters are in older buildings; back in 1978 very few of them were accessible. Add to that the fact that one of the jobs of a sound designer is to listen to the production from various seating locations in the house, and you can see how I spent a lot of time out of my chair crawling around. After ten great years working at the Berkeley Repertory Theater, I decided that I wanted to move into the film industry. Northern California has a rich history of exceptional sound for film (think Star Wars or Apocalypse Now), and Berkeley was the location of the Saul Zaentz Film Center. I was fortunate to gain an internship on a sound crew based on my credentials in the theater world. When I entered the film industry back in 1989, all of the editing of sound and picture was a much more laborious process. The sound was edited by splicing the sound into reels. Assistants would spend lots of time rewinding these units. There was a lot of running around. My job had its physical demands, but at least I didn’t have to crawl around (unless I needed to grovel at someone’s feet). In fact, adapting my editing bench to my height was a fairly painless process and everyone was very accommodating. Within a few years the industry transitioned to computer-based editing systems.

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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for many live events are usually at the back of the house on a platform. And the entry-level position for that kind of job usually encompasses a lot of hauling and setting up of heavy equipment. But radio, where engineers control what's going through to air, should be a fairly accessible profession. And if you have a good voice, you might be able to do announcing or be a DJ while you’re at it. In the long run, what makes any person excellent at their job isn’t their physical ability. Attention to detail, tenacity, and talent are what define a true professional. Jim LeBrecht is the owner of an audio postproduction company, Berkeley Sound Artists. He is also the co-author of the book, Sound and Music for the Theater: The Art and Technique of Design.

Spinal Cord Injury Volunteers are Needed The Translational Pain Research Group at the Brigham and Women‘s Hospital is conducting clinical trials that evaluate various medications to help relieve chronic neuropathic pain as a result of a Spinal Cord Injury. You MAY BE eligible if you are:

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With this revolution, post-production for film became easier for me to do and a very viable employment opportunity for others with physical disabilities. Here’s how it works today: film editing programs like Final Cut Pro and Avid Xpress enable an editor to piece together a project with a minimal amount of equipment. Instead of organizing hundreds of pieces of film by hand, all of the shots of the film are just a mouse click away. Placing them in the correct order requires a click and drag into a timeline. I haven’t heard a splicer clicking away for at least ten years. The same paradigm exists in post production for audio only. Programs like ProTools, Logic, Reason, and Acid allow remarkable sound and music creation on a computer. Where did the sound mixer with all of its little knobs, faders and switches go? Well, in certain cases you might still need one, but effective, efficient, high quality work can be done with a mouse, too. I learned to mix with a mouse, not on the huge mixing console typically shown in pictures of recording studios. What about other audio related professions? How accessible are they for paras and quads? I would think that trying to do sound reinforcement mixing would be a difficult job to do. The mix positions

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1870 years old Have been diagnosed with a Spinal Cord Injury Have had chronic neuropathic pain for at least 3 months

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March/April 2006

Avoiding Liability... Continued from page 18

arrange to have a third person present. Before concluding the relationship, be sure to retrieve any keys in the assistant's possession. If he or she has stolen anything from you, been abusive or severely breached your employment contract, terminate the PA's employment immediately. Any misconduct which violates the law should be

Disability... Continued from page 17

For people with disabilities — and other minorities as well — the ambiguity and bias of others’ actions and evaluations represent a psychological challenge: Selfviews are important but one source for those self-views (others) may be unreliable and ambiguous. If you have a disability, does this suggest that you should exercise total disregard for others’ evaluations and behaviors? No, but it suggests a more vigilant skepticism when incorporating others’ views into how you think about yourself. Their perceived limits are not your limits. Their biases should not become your biases. Know yourself. After all, you’ve got a lot of information to go on — in contrast to others, you are always there when you’re doing something. You have a far richer knowledge of yourself than anyone else.

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reported to the police. If immediate termination is not necessary, you may wish to give the assistant two weeks notice to find a new position, provided their continued presence would not make you uncomfortable. PAs can be a deeply significant adaptive resource for attaining your fullest potential. The more time you devote to the process of hiring, training, and supervising an assistant, the more likely you will be to have a beneficial and hassle-free relationship. And when the behaviors and evaluations of others are positive, here too it’s okay to apply some healthy skepticism. Just be careful not to deprive yourself of the benefits of positive regard from others. Psychologists have consistently learned that as people have more quality contacts with others and have the time and motivation to get to know them better, the biases and ambiguities fade — and so should the skepticism. In those cases, accept the praise and the positive regard from others — you and your self will thank you. For those interested in reading the scientific articles that form the basis for the specific topics discussed here, there are two programs of research to consider reading. 1. Professors Jennifer Crocker, Ph.D. and Brenda Major, Ph.D. have conducted extensive research on attributional ambiguity. 2. Professor Adrienne Colella, Ph.D. has conducted extensive research on the perceptions of disability in the workplace.

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Worship On Wheels Continued from page 1

and Disability Program,” N.O.D. assists local congregations through a number of ongoing projects. Its Accessible Congregations Campaign works directly with congregations of all faiths to help them in their outreach to persons with disabilities. Congregations sign a commitment promising to improve their facilities, making them more accessible, and to address their attitudes as well. Ginny Thornburgh heads the Religion and Disability Program. She and her husband Dick have long been activists in efforts to promote the legal rights of people with disabilities. They became involved in this cause when their son Peter suffered a severe head injury at age four months. Dick Thornburgh was U.S. Attorney General when Congress passed and President George H. W. Bush signed the Americans with Disabilities Act (ADA) into law. That legislation moved the focus of the issue from charity to justice. That All May Worship: An Interfaith Welcome to People with Disabilities, now in its seventh revised published edition, is the flagship publication of the Religion and Disability Program. It has sold some 63,000 copies over the years. “This interfaith guide offers common sense advice to congregations, seminaries, and national faith groups on becoming more accessible to people with disabilities,” reads the description of the book on N.O.D.'s website. It is loaded with helpful suggestions for

making a house of worship a home that welcomes everyone. It also features a comprehensive audit of barriers — attitudinal, communications, and architectural. Two other books have been published by the N.O.D. Religion and Disability Program. Loving Justice takes a close look at ADA and its relationship to local congregations, while From Barriers to Bridges offers guidance for moving out into our communities with resources and a commitment to effect change. Congregations of any faith can make good use of all three books. This book also contains step-by-step directions for sponsoring a That All May Worship conference, a spin off of the publication. Some 220 have been held to date across the country. These regional conferences bring together religious leaders, persons with disabilities, and other interested parties from various faith groups to worship together, to discuss issues related to disabilities, to seek solutions to problems, and to begin the work of building and tending to coalitions of like-minded people. This coalition building has resulted in a growing nationwide directory of religious leaders who have disabilities of some sort. The directory recently passed the one hundredth listing mark. Thanks to the pioneering work of N.O.D., people with disabilities are being treated more and more as assets to their faith communities who embrace the gifts they bring. Rev. John Gugel is a Lutheran minister and writer on disability retirement. He lives in Muskego, Wisconsin.

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SCI Peer Mentoring Continued from page 3

happens in a structured environment or an informal one. In my case, I received peer mentoring by getting involved in wheelchair sports. Those living in the Greater Washington, D.C. area are lucky to have access to the NRH SCI Peer Mentoring Program. The combined knowledge and experience that these active members of the SCI community have and are sharing with

others is priceless. For more information on the program, contact our Peer Mentor Coordinator, Inger Ljungberg, at 202.877.1694 or inger.h.ljungberg@medstar.net. Brenda Gilmore currently serves as the SCI Life Consultant on the NRH Rehabilitation Research and Training Center on SCI. She is a former nationally ranked wheelchair tennis player and is the Executive Director of the Prince George’s Tennis and Education Foundation in Prince George’s County, Maryland.

REAL PEOPLE REAL CHALLENGES REAL SOLUTIONS NY Metro April 21-23, 2006 Edison, NJ

Northern California November 3-5, 2006 Santa Clara, CA

Southern California June 16-18, 2006 Anaheim, CA

Texas December TBD, 2006 Houston, TX

Metro Detroit August 18-20, 2006 Novi, MI

Abilities Expo showcases the latest products and services to enhance the lives of people with disabilities. Visit the free exhibit hall packed with vendors featuring equipment demonstrations, attend free professional and consumer workshops, participate in special events, and visit with local organizations, all under the same roof!

ADMIT ONE www.abilitiesexpo.com • unlimited free passes • venue information • workshop schedule • special events • exhibitor list

Bring coupon to any 2006 Abilities Expo and save the $5 on-site entrance fee. Coupon must be filled out to be valid and may be photocopied for additional registrants. For information call: (800) 385-3085. NAME: ________________________________________________________________________ ADDRESS:______________________________________________________________________ CITY: __________________________________________________________________________

Abilities Expo is sponsored by the National Spinal Cord Injury Association. Stop by and visit the booth at any of the Abilities Expos.

STATE: ________________________________ ZIP: ____________________________________ EMAIL: ________________________________________________________________________

Questex Media provides certain customer contact data (such as customer's 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 to make your contact information available to third parties for marketing purposes, simply call 800-331-5706 between the hours of 6 am and 7 pm (CST) and follow the instructions to remove your name from Questex Media’s lists. Produced and

NSCIA

All events are wheelchair accessible. © 2006 Questex Media Group, Inc. All rights reserved.

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March/April 2006

NSCIA CHAPTER NETWORK ARIZONA Arizona United Spinal Cord Injury Association 901 E. Willetta, Ste. 2306, Phoenix, Arizona, 85006 Telephone: 602.239.5929 Telephone: 877.778.6588 Fax: 602.239.6268 Website: www.azspinal.org E-mail: info@azspinal.org Contact: Paul Mortensen

FLORIDA FSCIA, Spinal Cord Support Group of Collier County, Inc. 313 Spider Lily Lane, Naples, Florida, 34119 Telephone: 239.825.9999 Website: www.spinaldisability.com E-mail: a.malaspina@floridaspinalcordgroup.org Contact: Adrienne Malaspina

CALIFORNIA WYNGS, NSCIA 7900 Nelson Rd., Panorama City, California, 91402 Telephone: 818.267.3031 Fax: 818.267.3095 Website: www.wyngs.org E-mail: wyngs4sci@msn.com Contact: Michele Altamirano

ILLINOIS Spinal Cord Injury Association of Illinois 1032 South LaGrange Road, LaGrange, Illinois, 60525 Telephone: 708.352.6223 Fax: 708.352.9065 Website: www.sci-illinois.org E-mail: SCIInjury@aol.com Contact: Mercedes Rauen

CONNECTICUT Connecticut Chapter, NSCIA P.O. Box 400, Wallingford, Connecticut, 06492 Telephone: 203.284.1045 Website: www.sciact.org E-mail: nscia@sciact.org Contact: Bill Mancini DISTRICT OF COLUMBIA SCI Network of Metropolitan Washington, NSCIA Plaza West 9, 51 Monroe Street, Rockville, MD, 20850 Telephone: 301.424.8335 Fax: 301.424.8858 Website: www.spinalcordinjury.net E-mail: jessep@iben.com Contact: Jessie Parker E-mail: david@ecnv.org Contact: David Burds E-mail: davidb@ecnv.org

INDIANA Calumet Region Chapter, NSCIA 2109 Cleveland St., Gary, Indiana, 64404 Telephone: 219.944.8037 E-mail: rjackson@ci.gary.in.us Contact: Rita Renae Jackson IOWA Spinal Cord Injury Association of Iowa 3936 NW Urbandale Drive Urbandale IA 50322 Telephone: 515.270.1522 E-mail: tima@advancedrehabtech.com Contact: Tim Ascherl

KENTUCKY Derby City Area Chapter, NSCIA 1518 Herr Ln., Louisville, Kentucky, 40222 Telephone: 502.589.6620 E-mail: dallgood@calky.org Contact: David Allgood MASSACHUSETTS Greater Boston Chapter, NSCIA HEALTHSOUTH, New England Rehabilitation Hospital, Two Rehabilitation Way, Woburn, Massachusetts, 01801 Telephone: 781.933.8666 Fax: 781.933.0043 Website: www.sciboston.com E-mail: sciboston@aol.com Contact: Kevin Gibson NEW HAMPSHIRE New Hampshire Chapter, NSCIA P.O. Box #197, No. Salem, NH 03073 Telephone: 603.479.0560 Fax: 928.438.9607 Website: www.nhspinal.org E-mail: lthompson@nhspinal.org Contact: Lisa Thompson NEW YORK Greater Rochester Area Chapter, NSCIA P.O. Box 20516, Rochester, NY, 14602 Telephone: 585.275.6097 Contact: Karen Genett E-mail: rochesternscia@yahoo.com Telephone: 585.275.6347 Contact: Kathy Flannagan E-mail: ascaramu@frontiernet.net Contact: Amy Scaramuzzino

NEW YORK New York City Chapter, NSCIA Mt. Sinai Dept of Rehab Medicine, Attn: James Cesario 1 Gustave L. Levy Place, Box 1240, New York, NY 10029-6574 Phone: 212.659.9369 Fax: 212.348.5902 Website: www.nycspinal.org E-mail: NYCspinal@NYCspinal.org Contact: James Cesario or John Moynihan

TEXAS Rio Grande Chapter Highlands Regional Rehabilitation Hospital 1395 George Dieter, El Paso, TX 79936 Telephone: 915.532.3004 E-mail: riograndenscia@aol.com Contact: Sukie Armendariz, Telephone: 915.298.7241 Contact: Ron Prieto

NORTH CAROLINA NCSCIA 3701 Wake Forest Rd., Raleigh, North Carolina, 27609 Telephone: 919.350.4172 E-mail: dmyers8@triad.rr.com Contact: Deborah Myers E-mail: kvasquez@wakemed.org Contact: Karen Vasquez

VIRGINIA Old Dominion Chapter, NSCIA P.O. Box 8326 (1 st Class mail only) Richmond, VA 23226 Telephone: 804.726.4990 Fax: 804.726.3150 Website: www.odcnscia.org E-mail: info@odcnscia.org Contact: Shawn Floyd

OHIO Northwest Ohio Chapter, NSCIA 10117 Woodmont Way, Perrysburg, Ohio, 43551 Telephone: 419.455.0748 Website: www.nwonscia.org E-mail: jbeckley@woh.rr.com Contact: Jim Beckley E-mail: DOstra1338@aol.com Contact: Debra Ostrander SOUTH CAROLINA NSCIA South Carolina Chapter 500 Taylor Street, Suite 403 Columbia, SC 29201 Toll free: 866.445.2198 Telephone: 803.252.2198 Fax: 803.376.4156 Website: www.scscia.org E-mail: richardscia@bellsouth.net Contact: Richard Bridges

WISCONSIN NSCIA Southeastern Wisconsin 1545 S. Layton Blvd. , Rm. 320 Milwaukee, WI 53215 Telephone: 414.384.4022 Fax: 414.384.7820 Website: www.nsciasew.org E-mail: office@nsciagmac.org Contact: Bill Wright, President or Mary Rostkowski, Secretary

For a current listing of Chapters and Support Groups, visit www.spinalcord.org, or call (800) 962-9629.

NSCIA SUPPORT GROUP NETWORK CALIFORNIA Leon S. Peter’s Rehabilitation Center Community Regional Medical Center P.O. Box 1232, Fresno, California, 93715 Telephone: 559.459.6000 ext. 5783 E-mail: rgreenberg@communitymedical.org Contact:Ray Greenberg CALIFORNIA North Coast S.C.I. support group Tricounty Independent Living Center 955 Myrtle Avenue Eureka, CA 95501 Website: www.tilinet.org Toll Free: 800.576.5000 Telephone: 707.834.6997 E-mail: richbsherry@yahoo.com Contact: Richard Sherry FLORIDA Florida Rehabilitation and Sports Medicine 5165 Adanson St., Orlando, Florida, 32804 Telephone: 407.823.2967 Contact: Robin Kohn Telephone: 407.623.1070 Contact: Carl Miller FLORIDA HEALTHSOUTH Sea Pines Rehabilitation Hospital 101 East Florida Ave., Melbourne, Florida, 32901 Telephone: 321.984.4600 Email: Ellen.LyonsOlski@healthsouth.com Contact: Ellen Lyons-Olski

FLORIDA HEALTHSOUTH Capital Rehabilitation Hospital 1675 Riggins Rd., Tallahassee, Florida, 5315 Telephone: 850.656.4800 Contact: JoAnna Rodgers-Green FLORIDA Tampa Bay Area Support Group Healthsouth 90 Clearwater Largo Rd., Largo, Florida, 33770 Telephone: 800.995.8544 Telephone: 813.844.4286 Fax: 813.844.4322 Website: www.flspinalcord.us E-mail: info@flspinalcord.us Telephone: 727.821.9131 Contact: Barry Marshall GEORGIA Columbus SCI Support Group Telephone: 706.322.9039 E-mail: rvcost@mchsi.com Contact: Ramona Cost GEORGIA HEALTHSOUTH Central GA Rehab Hospital 3351 Northside Dr., Macon, Georgia, 31210 Telephone: 800.491.3550, ext. 643 Telephone: 478.471.3500, ext. 643 Fax: 478.477.6223 Contact: Kathy Combs KENTUCKY Friends with Spinal Cord Injuries 3785 hwy 95 Benton, Kentucky 42025 Telephone: 270.493.0495 E-mail: whelygurl@yahoo.com Contact: Anndrea Coffman

MARYLAND Kernan Hospital SCI Support Group 2200 Kernan Drive, Baltimore, Maryland, 21207 Telephone: 410.448.6307 Website: www.kernanhospital.com/kernan E-mail: lwilson@kernan.umm.edu Contact: Lisa Wilson MISSISSIPPI Magnolia Coast SCI Support Group 12226 Oaklawn Rd., Biloxi, Mississippi, 39532 Telephone: 800.748.9398 Website: www.lifeofms.com Email: mbahret@yahoo.com Contact: Michelle Bahret MISSOURI Southwest Center for Independent Living 2864 S. Nettleson Ave., Springfield, Missouri, 65807 Telephone: 417.886.1188 Telephone: 417.269.6829 Website: www.swcil.org E-mail: mtrimble@swcil.org Contact: Marion Trimble NEW YORK Spinal Cord Injury Network of Central New York 635 James Street Syracuse NY 13203 Telephone: 315.671.2907 Fax: 315.472.9252 Website: http://ariseinc.org/ E-mail: mbarkley@ariseinc.org Contact: Matthew Barkley Telephone: 315.464.2300 Fax: 315.464.2305 Email: bartoszt@upstate.edu Contact: Tammy Bartoszek

NEW YORK Long Island Spinal Cord Injury Resource Center Telephone: 631.221.WALK Website: www.testaverdefund.org E-mail: info@testaverdefund.org Contact: Ron Quartararo

PENNSYLVANIA Healthsouth Harmarville 320 Guys Run Road Pittsburgh, PA 15238 Telephone: 412.826.2725 Contact: Mark Kulzer

OHIO Hillside Rehabilitation Hospital 8747 Squires Lane, Warren, Ohio, 44484 Telephone: 330.856.5861 (H) Telephone: 330.856.4303 (W) Contact: Mike Logan Telephone: 330.841.3700 Contact: Sue Joy

PENNSYLVANIA Magee Rehabilitation SCI Resource & Support Group 6 Franklin Plaza, Philadelphia, Pennsylvania, 19102 Telephone: 215.587.3174 Fax: 215.568.3736 Website: www.mageepeers.org Contact: Marie Protesto

PENNSYLVANIA HEALTHSOUTH Rehabilitation Hospital of Altoona 2005 Valley View Blvd., Altoona, Pennsylvania, 16602 Telephone: 800.873.4220

PENNSYLVANIA HEALTHSOUTH Rehabilitation Hospital of York 1850 Normandie Dr., York, Pennsylvania, 17404 Telephone: 800.752.9675 ext. 799 Telephone: 717.767.6941 E-mail: tammy.derk@healthsouth.com Contact: Tammy Derk

PENNSYLVANIA HEALTHSOUTH Greater Pittsburgh Rehabilitation Hospital Support group involves inpatients only 2380 McGinley Rd., Monroeville, Pennsylvania, 15146 Telephone: 800.695.4774 Telephone: 412.856.2584 E-mail: kristy.nauman@healthsouth.com Contact: Kristy Nauman, P.T. PENNSYLVANIA Delaware Valley Spinal Cord Injury Association 2610 Belmont Ave., Philadelphia, Pennsylvania, 19131 Telephone: 215.477.4946 Contact: Bruce McElrath

WEST VIRGINIA West Virginia Mountaineer Support Group P.O. Box 1004 Institute, WV 25112-1004. Telephone: 304.766.4751 (W) Telephone: 304.727.4004 Fax: 304.766.4849 E-mail: steveh@mail.drs.state.wv.us Contact: Steve Hill

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.


March/April 2006

Freedom to choose where, when and how to explore life is the aspiration of virtually every American. For many persons with physical disabilities and special transportation needs, having choices to fit their individual needs provides a rewarding experience. Ford Mobility Motoring offers valuable financial and practical assistance, including reimbursement for the exact amount of vehicle adaptations, up to $1,000 on adaptive equipment and up to $200 on alerting devices, lumbar support and running boards.* Ford Credit Mobility Financing — Offering flexible finance terms for persons with physical disabilities and their families. In addition, they will finance both the vehicle and the adaptive equipment for qualified customers enrolled in the Ford Mobility Motoring Program. Roadside Assistance — Tire changes, towing, fuel delivery, lockout assistance and jump-starts are now just a phone call away. In times of need, a 24-hour toll-free number can bring assistance any day of the year.

In memory of Christopher Reeve. The Christopher Reeve Paralysis Foundation (CRPF) is committed to funding research that develops treatments and cures for paralysis caused by spinal cord injury and other central nervous system disorders. The Foundation also vigorously works to improve the quality of life for people living with disabilities through its grants program, Paralysis Resource Center and advocacy efforts.

www.mobilitymotoringprogram.com

1-800-952-2248 1-800-833-0312 TTY

1952 - 2004 *Total reimbursement is not to exceed $1,000. Options available for factory installation are not considered eligible under the terms of the program.

MA8629/12-04/1

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SCILife, Vol. 3, No. 2