● People with disabilities remain twice aslikely to drop out of high school (21 per-cent versus 10 percent).

The poll also noted significant prob-lems with access to health care, transporta-tion, and getting out to socialize or attendreligious services. Only 34 percent of peo-ple with disabilities expressed satisfactionwith their lives compared to 61 percent ofpeople without disabilities. Many expressedworry about being unable to care for them-selves and fear that they would lose coveragefor Assistive Technology devices that theyrely on for independence.

"We encourage people to read the statis-tics, to think of what they mean," statesBrewster Thackeray, N.O.D.'s VicePresident of Government Affairs. Thackerayis currently working with Harris on thesoon-to-be-released full report of the 2004study. "Use them when approaching state,

local, and national government officials, aswell as industry, and other leaders who maybe in a position to close these gaps andincrease opportunities to fully participate inAmerican life," he continues.

In a Wall Street Journal column("Halting Progress for the Disabled,"8/19/2004), Al Hunt cited the Harris Polland tied the results to the upcoming elec-tion on November 2. "This underscores thestakes in this year's presidential race. TheAmericans with Disabilities Act (ADA) waspushed through and signed into law byGeorge Herbert Walker Bush in 1990 -overriding the objections of his chief ofstaff. He is a hero to many with disabilities.His son inexplicably has shown little inter-est in the issue and through executiveactions and judicial appointments threatensto roll back much of his father's top domes-tic legacy," writes Hunt.

By Brewster Thackeray,NSCIA contributor

Amid-August Louis Harris InteractivePoll found Democratic presidentialcandidate John Kerry with a notable

lead over President George W. Bush amonglikely voters with disabilities, 50 to 40 per-cent. Among likely non-disabled voters,Bush had a two point lead. Combine thetwo populations and the candidates are tiedat 47 percent.

Given these numbers, and the volatilityof an extremely close race,neither side can afford toignore the disability vote— and neither side isdoing so. But they havedifferent approaches.

In 1988, candidateGeorge H.W. Bush (thecurrent President's father)pledged that if Congresspassed the Americanswith Disabilities Act, hewould sign it. He madegood on that promise,and earned much goodwill from the disabilitycommunity. The Repub-lican campaign team

surely recalled this duringthe summer of 2000,when George W. Bushpromised to championwhat he called his NewFreedom Initiative.

Upon being sworn in,the second PresidentBush wasted no time. Inearly February 2001, heformally unveiled theInitiative in a White House ceremony.Director of the National Institute onDisability and Rehabilitation Research, Dr.Steven Tingus, Chicago policeman JimMullen, and National Organization onDisability President Alan Reich joined thepresident on the dais, where he used a low-ered podium specially constructed for theoccasion and made his remarks sitting ateye-level with the others.

While both Bushes incorporated dis-ability issues into their campaign agendas,that was not enough to win them themajority of the community's vote. The

1988 disability vote was narrowly split infavor of Democrat Michael Dukakis (53 to47 percent), while in 2000, Al Gore's 56 to38 percent lead contributed to his winningthe popular vote.

Knowing the value of every vote fromhistorically-friendly minority groups, the2004 Democratic presidential candidatesspoke out on disability issues exceptionallyearly. Howard Dean responded to overturesfrom several prominent disability advocatesand worked with them to craft and releasea comprehensive disability platform sixmonths before the first primary ballots

www.spinalcord.org

John KerryPhoto by Hall Photography

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

Vol. 1, No. 2Fall 2004

2004's Candidates Are ReachingOut to the Disability Vote

Continued on page 6

Continued on page 13

George W. BushPhoto by Eric Draper, White House

By Janine Bertram Kemp,NSCIA contributor

A disability survey released in June, 2004noted that significant disparities stillexist between disabled and non-dis-

abled Americans. Key problem areasremain for people with disabilities. Thepoll, performed by the NationalOrganization on Disability (N.O.D.) andHarris Interactive (formerly Louis Harrisand Associates), is the latest in a series of

trend tracking studies that began in 1986.Although some data indicate small

gains for people with disabilities, we still lagfar behind our non-disabled counterparts.A few statistics highlighted by HarrisChairman, Humphrey Taylor, are:

● Only 35 percent of people with disabili-ties reported being employed full or parttime, compared to 78 percent of thosewho do not have disabilities.

● Three times as many live in poverty withannual household incomes below$15,000 (26 percent versus 9 percent).

2004 N.O.D./Harris Poll ReleasedLarge Gaps Remain Between Disabled and Non-Disabled Americans

2 Fa l l 2004

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Ford Credit Mobility Financing offersflexible finance terms for persons with physicaldisabilities and their families, plus financingof both the vehicle and the adaptive equipmentfor qualified customers.

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A World Without Limits For Hearts That Know No Bounds

The Christopher Reeve Paralysis Foundation (CRPF) encourages and supportsresearch to develop effective treatments and a cure for paralysis caused by spinalcord injury and other central nervous system disorders. The foundation evaluatesand selects these research programs using councils of internationally renownedneuroscientists and clinicians. The foundation also allocates a portion of itsresources to grants that improve the quality of life for people with disabilities.

3Fa l l 2004

SCILife is dedicated to the presentation of news con-cerning people with spinal cord injuries caused by traumaor disease.We welcome manuscripts and articles on subjects relatedto spinal cord injuries or the concerns of persons with dis-abilities for publication, and reserve the rights to accept,reject, or alter all editorial and advertising materials sub-mitted. Manuscripts and articles must be accompanied by a selfaddressed stamped envelope if return is requested. Items reviewed in New Products Announcements andadvertising published in SCILife do not imply endorse-ment of organizations, products or services.

SCILife is a publication of the National Spinal Cord Injury Association

SCILiife STAFFEEXXEECCUUTTIIVVEE EEDDIITTOORR:: Gary KarpAASSSSOOCCIIAATTEE EEDDIITTOORR:: Janine Bertram Kemp DDEESSIIGGNN AANNDD LLAAYYOOUUTT:: Nikolai AlexeevAADDVVEERRTTIISSIINNGG SSAALLEESS:: Joyce Parker DDAATTAA IINNPPUUTT:: Bonnie J. Haynes

NSCIA NATIONAL OFFICE STAFFEEXXEECCUUTTIIVVEE DDIIRREECCTTOORR:: Marcie Roth RREESSOOUURRCCEE CCEENNTTEERR MMAANNAAGGEERR:: Charleene FrazierMMEEMMBBEERRSSHHIIPP SSEERRVVIICCEESS AASSSSOOCCIIAATTEE:: Daniela CastagninoMMEEMMBBEERRSSHHIIPP SSEERRVVIICCEESS AASSSSOOCCIIAATTEE:: Chae WolterbeckCCOONNTTEENNTT EEDDIITTOORR:: Janine Bertram Kemp

BOARD OF DIRECTORS EExxeeccuuttiivvee CCoommmmiitttteeeePPRREESSIIDDEENNTT:: Carmen D. Jones CCHHAAIIRR,, EEXXEECCUUTTIIVVEE CCOOMMMMIITTTTEEEE:: Harley Thomas VVIICCEE--PPRREESSIIDDEENNTT FFOORR CCHHAAPPTTEERRSS:: Pat Maher VVIICCEE PPRREESSIIDDEENNTT FFOORR DDEEVVEELLOOPPMMEENNTT:: Tari Susan Hartman TTRREEAASSUURREERR:: Jeffrey D. Leonard SSEECCRREETTAARRYY:: Janeen EarwoodCCEEOO//EEXXEECCUUTTIIVVEE DDIIRREECCTTOORR:: Marcie Roth

DDiirreeccttoorrss David Boninger, Ph.D.Jack DahlbergSusan Douglas, MDJohn FioritiRichard Hollicky Gary Karp Katrine R. MayhewPaul MortensenJim Root Suzanne Wierbinski Robert Zuckerman

SCILiife PUBLISHERSPPUUBBLLIISSHHEERR:: Charles W. HaynesPPUUBBLLIISSHHEERR:: J. Charles Haynes, JD

If you have any questions related to your membership with NSCIA, orwould like to join, contact us at901 East Willetta, Suite 2306, Phoenix, AZ 85006, e-mail: membership@spinalcord.org, fax: 602.239.6268, or phone us at 602.239.5929 or toll free at 877.778.6588.

For questions not related to membership, write to: NSCIA National Office, 6701 Democracy Blvd., Ste. 300-9, Bethesda, MD 20817. Our voice phone is 301.214.4006 fax: 301.881.9817.Email us at info@spinalcord.org or go to www.spinalcord.org.

For additional information on advertising inSCILife, 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.comwww.hdipub.com

SCILife © 2004

Thoughts on theSingle-Issue VoterBy Gary Karp,NSCIA Board Member

In every election, there is much made of"special interests" who are accused ofexerting undue influence on our politi-

cians. While it'sfair enough to beconcerned thatcorporations withhuge money andaccess to heavy-hitting lobbyistsare having morethan their fairshare of impact on

our policy-making and legislative process,they are essentially coming from the sameplace that all of us come from — we voteaccording to what affects us directly.

We have plenty of cause to supportcandidates who understand disabilityissues, and who will exert their leadershipto foster enlightened policy. If they aregoing to help make our lives better byremoving obstacles and by distributing

resources (read "money") in support ofindependence, then of course we'll orderup a campaign bumper sticker post haste.

But do we also need to take the largerpicture into account? Are we consideringhow that politician's positions wouldaffect the wider society? Is the impact oftheir decision on the future part of ourdecision-making formula? Is it reallyalways right to celebrate money beingbrought into our local communities —which foster employment and quality oflife in the short term — if it has to comeout of someone else's pocket, put us deep-er into deficit spending in the long term,or increase our already over-consuminghabits? For instance.

There's an innate contradiction in vot-ing only from our own special interests;it's an entirely natural thing for us to do,but it’s still essentially selfish at its root. Ioften wonder if it's a core failing of ourcurrent approach to politics that we arenot all principally thinking and debatingin terms of what is best for the whole —and demanding that from our leaders.Sometimes that can mean compromisinglocal or individual priorities in the shortterm, but if everyone thought that way,might we all be better off in the end, Iwonder?

Having strong feelings about a givenissue can create some serious internal con-flict for a voter. What do you do if you feelthat John Kerry is going to be a strongerproponent of disability issues, yet have a

strong objection to abortion? Or perhapsyou feel that President Bush's aggressiveresponses in Afghanistan and Iraq havebeen divisive in the international commu-nity, yet appreciate the disability advocacymeasures in his New Freedom Initiative.Sometimes being a one issue voter justdoesn't work, does it?

It really comes down to values, andI'm inclined to believe that a candidatewho has the ability to see past the obsoletestereotypes of "the disabled" as dependentobjects of charity and "care" from a policyperspective, are going to be more enlight-ened in general. If they get that Americancitizens are being denied their potential —and innate right — to live more full andmeaningful lives, and see that their leader-ship can open up more pathways for all ofus to contribute in creative and productiveways, then odds are they'll have a largerworld view, and will work for the greatergood.

Assuming they can juggle the corpo-rate lobbyists banging at their door.

So in this issue of SCILife we've triedto help you get your bearings on disabilityissues pertaining to this election, and urgeyou to add the power of your single voteto the combined power of the disabilityconstituency in this country. While you'reat it, keep the greater good in mind.Hopefully it will all meet in the sameplace, and your choices of who you'll sup-port to lead us in the coming years will beclear.

from the editor

By Janine Bertram Kemp,SCILife associate editor

H ugh Gregory Gallagher, 71, died ofcancer on July 13, 2004 inWashington, D.C. He was an author

and political operative extraordinaire. Heeschewed the spotlight and operated skill-

fully behind the scenes. In 1995, Gallagherreceived the $50,000 Henry Betts Awardfor his lifetime work on disability.

At age 19, he contracted polio. Oftencalled the Grandfather of the disabilitymovement, Gallagher — then LegislativeAide to Senator Bob Bartlett (D-Alaska) —drafted and shepherded into law the 1968Architectural Barriers Act (ABA) which

required that buildings built with federalfunds be accessible. It was the first disabili-ty civil rights law. "Hugh's most outstand-ing contribution to the quality of life ofpeople with disabilities was to successfullyplace disability rights on Congress's tablefor the first time," said former SenatorRobert Dole (R-Kansas).

"Gallagher made disability rights notonly his agenda but the agenda ofAmerica," said author and lifelong friend,Lorenzo Milam, whom Hugh met whenthey roomed together in 1953 at the WarmSprings Institute for Rehabilitation inGeorgia, started by Franklin Roosevelt.

Milam described Hugh working in theSenate Office Buildings when there was noaccess. Gallagher was irritated at having to"pee in a cup." "Each day," says Milam,"he'd wait in the Senate garage for someoneto happen along and help him up thecurb."

Following his work in the Senate,Gallagher became a Politics and PolicyConsultant for British Petroleum. His worktook him to Alaska, about which he toldhair-raising tales about dicey hoists ontohigh platforms by drunken workers inwindy conditions. After 5 years at BritishPetroleum, where the pressures of corporatework required him to suppress his emo-tions and "behave like an automaton,"Hugh left that career.

Gallagher the AuthorGallagher authored several books from

his home in Cabin John, Maryland. Hisearly works were Advise and Obstruct: theRole of the United States Senate in ForeignPolicy Decisions, (1969) which coveredCongressional stalls and machinations, andEtok: A Story of Eskimo Power (1974)about an Eskimo shaman's leadership ingetting land claims for indigenous people.

FDR's Splendid Deception (1985) washis best-known book. He was the first to

write about Roosevelt's life with a disabili-ty, the extraordinary efforts to hide thePresident's polio from the American pub-lic, and the extreme toll said deceptiontook on FDR. Following its release,Gallagher was invited to speak at the pres-tigious Women's Democratic Club. Someof the Georgetown matrons staged a walk-out, outraged that Hugh had "outed"FDR's disability. FDR's SplendidDeception forever changed historical dis-course on Roosevelt. Gallagher alsoauthored Nothing to Fear (2002), a photo-graphic narrative of FDR.

His book By Trust Betrayed (1990) wasabout disability and Nazi Germany.Gallagher's research showed that the Nazisbegan and perfected the holocaust's mur-derous techniques while killing disabledpeople.

In Blackbird Fly Away (1998) Gallagherexamined his own attitudes and experiencesregarding disability. Hugh did not shirkfrom honest writings about the grief andanger he experienced at loss of physical func-tion and living with pain. In the disabilitymovement, leaders generally shied awayfrom discussing any emotional trauma relat-ed to disability. The conventional wisdomwas that discrimination and backward pub-lic attitudes were the be all and end all ofproblems relating to disability.

Physician-aassisted SuicideGallagher's political interests extended

to gay rights and physician-assisted suicide.The latter cause placed him at odds withmuch of the leadership of the disabilitymovement. But Hugh's approach to politicswas unusual — he never cared much forbeing "politically correct." Yet he did notthink in terms of "enemies" and always sawbeyond "us and them." He had great respectfor Diane Coleman, leader of Not Dead Yet,the national group that opposes physician-assisted suicide. He understood that poverty,

lack of attendant care, housing, and otherbasics of independent living leave peoplewith disabilities vulnerable to depressionand desirous of physician-assisted suicidewhen they are not terminally ill. In his workwith Compassion in Dying, a pro assistedsuicide organization, Gallagher was adamantand consistently argued that disability not beviewed as illness or terminal.

Renaissance ManIn 1956, Gallagher graduated from

Claremont College in California. He thenwent on to Oxford University on aMarshall scholarship where he received theBritish equivalent of a master's degree. Hereceived the Marshall scholarship afterbeing denied a Rhodes Scholarship solelybecause of his disability.

Gallagher was an intellectual with apassion for great literature. He could quoteextensive passages of Ulysses and adoredHomer, Marlowe, and Shakespeare. Heoften joked that he got the ABA through sohe could get into the Library of Congress.He loved the opera and the ballet.

During a visit with him in the hospitalprior to his death, I told Hugh that he wasirreplaceable. He was one-of-a-kind in hisability to see and articulate all facets of anissue and had an unparalleled capacity tocommunicate with and reach an individualat intellectual, emotional, and spiritual lev-els. He liked that and reminded me that hehad friends from all walks of life and wasable to bring them together. Leaving thehospital, I realized that I had known manytypes of people. I had dined with a presi-dent, been in the projects, and a variety ofplaces in between. Hugh Gallagher was, barnone, the greatest human being I haveencountered.

Gallagher is survived by his father,Hubert Gallagher of Bethesda, his sister,Janet Hermann of Botswana, and his part-ner, John Holstein of Ottawa.

4 Fa l l 2004

Update: Ma'rwa Ahteemi From Camp Anaconda,

Northern Iraq

A fter four months, NSCIA has receivedword that Ma'rwa Ahteemi and herfamily are safe in Iraq. Ma'rwa and her

Uncle Saleh, who accompanied her whenshe came to Washington, D.C. for treat-ment and rehabilitation, left the UnitedStates in May and, other than learning theyhad arrived safely in Iraq and left AnacondaU.S. Army base for home, there has beenno word about Ma'rwa.

Ma'rwa, SCILife readers may recall, isthe 13-year-old Iraqi child who sustained aspinal cord injury in an accidental U.S. mor-tar attack. NSCIA's Executive Director,Marcie Roth organized bringing Ma'rwa tothe United States for medical care and reha-bilitation donated by the NationalRehabilitation Hospital (NRH). Withextensive help from Sen. Tom Harkin, (D-IA), Marcie enlisted the aid of the numerousmilitary and civilian personnel.

Finally, on September 2, Roth receivedword from SFC Jack Martin, Civil AffairsNon-Commissioned Officer, who is sta-tioned with the 81st Brigade Combat team.SFC Martin reported that Ma'rwa's UncleSaleh arrived at Camp Anaconda asking afterMa'rwa's wheelchair. Next week, NRH issending Ma'rwa a manual wheelchairequipped with balloon tires that shouldimprove her mobility in rural Iraq. Salehreports that Ma'rwa and the rest of the fami-ly are fine.

SFC Martin has joined the ranks of thenumerous military and civilian angelsassisting Ma'rwa and the Ahteemi family.He is arranging for a job at the base forSaleh and is hoping to visit Ma'rwa at theAhteemi family home. He has also sparkedinterest in Ma'rwa and her family for SFCTommy Carson of the 29th SignalDivision. Both left for Iraq from Fort LewisArmy Base south of Tacoma, Washington.They are attempting to generate additionalsupport for Ma'rwa from families in theSeattle/Tacoma area.

In an e-mail to SFC Martin, Roth said,"We can't make things better for everyone,but we can make things better for one fami-

ly who have had a very hard life and unspeak-able tragedy. I am truly grateful that theyfound you and that you are willing to help."She went on to note that Ma'rwa's Fund hadnot grown as NSCIA had hoped. The$1,180 raised thus far is being saved to coverthe cost of essential medical supplies oncethose that were generously donated by NRHrun out.

Ma'rwa's story received extensive cover-age in an Associated Press (AP) story bySharon Cohen, released August 16, 2004.The story was featured in numerous U.S.media markets, including San Diego andBoston newspapers, as well as on CBS andNBC national television and radio newsand several local stations. Internationalnews outlets in Amman, Jordan also cov-ered the compelling story. The text of theAP story can be read at the NSCIA website,www.spinalcord.org.

Ma'rwa is still in need of your support.Donations to Ma'rwa's Fund can be madeto the National Spinal Cord InjuryAssociation, P.O. Box 631002, Baltimore,MD. 21263-1002.

Hugh Gallagher DiesPioneer of the DisabilityMovement

in tribute

5Fa l l 2004

The Power of theDisability DollarBy Carmen Jones,President, NSCIA Board

In this issue of SCILife, NSCIA ExecutiveDirector, Marcie Roth describes thepower of the disability vote and notes sig-

nificant public policy and civil rights lossesfor Americans with disabilities in, for

e x a m p l e ,e m p l o y m e n tand education.

Losses inpublic policynotwithstand-ing, opportuni-ties for peoplewith disabilitiesare growing onan immense

scale in this era of fast-paced change forpeople with SCI/D. The realms of business,arts, entertainment, and sports are begin-ning to reflect our increasing participationand influence. Transportation, hotels, andrestaurants have become more accessible.In the mid-1980s, it was rare to see a

wheelchair rider in an airport. Now we areflying, dining, performing, working — andworking out. Actors with disabilities aregetting TV roles and models with disabili-ties are seen advertising products and serv-ices. We are in schools and on universitycampuses that are now accessible.Technological advances — not the least,the Internet — have eliminated manyphysical and informational barriers. In fact,four out of ten people with disabilitiesspend an average of 20 hours per week con-ducting business and personal activitiesonline. That is higher than the averagenon-disabled Web surfer.

Despite these gains, there are a fewmiles yet to travel on the road to full socie-tal inclusion. I work in the corporateworld. Business leaders — like politicians— have often overlooked people with dis-abilities because of stereotypes and miscon-ceptions about our lifestyle. The majorityof people with disabilities are not shut-ins,nor do we subsist on government entitle-ment programs. According to the U.S.Census Bureau, one in five Americans has adisability — 54 million of us. Of the 69.6million families in the United States, 20.3million families have at least one memberwith a disability. In their March, 1998issue, Fortune stated that the long-termdisability market is the largest and mostdiverse of minority groups, with an aggre-gate income that tops $1 trillion — $220billion of which is discretionary income.These statistics are a mighty antidote tostereotypes and misconceptions.

Why haven't people with disabilitiesmade more significant advances, in light ofthese statistics? With razor thin profit mar-gins and public opinion polls showing a 3-5% difference between the George W. Bushand John Kerry, why aren't companies andpoliticians doing more to court the disabil-ity market? The answer is simple — theydon't hear us.

If you were to study the unfolding ofthe Civil Rights Movement of the 1960s,you would see that African-Americans did-n't make significant strides until they notonly had peaceful protests, but when theyboycotted companies or withheld theirvotes. They let their voices be heard, how-ever they coupled it with a political andeconomic punch. Real change only beganto occur when more people of color enteredthe corporate world where decisions aremade and influenced.

Marcie Roth properly points out that ifAmericans with disabilities actually registerand vote on Election Day, we could swaythe outcome of an election. Our participa-tion in the political process is the road toregain what we've lost. A few sharp politi-cians have woken up to that fact.

I believe that we're on the front-end ofseeing companies move beyond complianceof the Americans with Disabilities Act tocreate long-lasting, brand-loyal relation-ships with consumers with disabilities as aviable market. I am proud of the fact thatNSCIA is leading the way to help compa-nies create real partnerships — not just forhandouts — with many of the country's

from the president

The Power of theDisability VoteVoters withDisabilities CouldSway the Election

By Marcie Roth,NSCIA Executive Director

R ecently I attended the DemocraticNational Convention in Boston whereI presented Sen. Tom Harkin (IA) a

"Lead On" award (in collaboration withseventeen national organizations) for hisleadership on disability issues, especially forpeople with spinal cord injuries and dis-eases (SCI/D). I was joined on stage tohonor Senator Harkin by NSCIA Boardmember John Fioriti, Boston ChapterBoard member Mike Ferriter, and othermembers of the Boston Chapter.

By the timeyou read this, Iparticipated in asimilar event inNew York Cityduring theR e p u b l i c a nN a t i o n a lC o n v e n t i o n ,presenting our"Lead On"award to Rep.John Shimkus(IL) who, as an

example of his support of disability issues,joined Sen. Harkin as a co-author of theMedicaid Community Attendant Servicesand Supports Act (MiCASSA), which willspare people from being forced into nurs-ing homes by making money available forcommunity living. I was joined in the BigApple by Jim Cesario of our New York CityChapter, Harley Thomas, NSCIA'sExecutive Committee Chair, and otherNew York City Chapter members — aswell as Business Advisory Committeemembers from America Online, Aventis,and Acorda Therapeutics.

NSCIA is nonpartisan. We do not takesides or endorse candidates. At politicalgatherings, I hand out buttons that say "Feelthe Power of the Disability Vote." On ourNSCIA website at www.spinalcord.org, wehave posted both of the presidential candi-dates' answers to questions given to them bythe American Association of Persons withDisabilities (AAPD). In this issue ofSCILife, Brewster Thackeray of theNational Organization on Disability getsyou started with an overview of the disabili-ty policy histories and positions of GeorgeW. Bush and John Kerry.

Are you preparing yourself to cast aninformed vote on the issues that have thegreatest impact on your life? Have youlooked at the candidates' positions and

from the executive director

Continued on page 17

Continued on page 18

6 Fa l l 2004

were cast. As Dean's surge made his issuepositions the ones to match, a variety of dis-ability organizations — including theAmerican Association of People withDisabilities (AAPD), National Organizationon Disability (N.O.D.), and community-integration advocates ADAPT — called onthe other Democrats to answer surveys andput out statements on important disabilityissues.

To varying degrees, every Democraticcandidate save Al Sharpton did so. JohnKerry was not the first to share his platform,but when he released it, the 22-page docu-ment was arguably the best and most thor-ough. Kerry set a high water mark in com-mitments and pledges to the disability com-munity. Within two months, Kerry hadpulled ahead in the primaries, and was theclear nominee. His commitment toAmericans with disabilities was on therecord, and so were those of his runningmate (and primary election rival), SenatorJohn Edwards.

The New Freedom Initiative thatGeorge W. Bush introduced in 2001 is awide-ranging series of pledges. It includesbroad plans to increase access to assistivetechnologies, expand educational opportu-nities, promote homeownership, increaseemployment opportunities, and expandaccess to transportation and integrationinto community life.

Many of the New Freedom Initiative'sgoals are still pending. Some advocates sug-gest that other Administration policies have

in fact worked against them. But theInitiative is receiving revived attention asthe Bush Administration focuses on theupcoming election.

Responding to a recent AAPD survey,Bush focused on efforts he has madethrough the Initiative:

● Proposed $884 million over six years toremove transportation barriers

● Issued an Executive Order calling forswift implementation of the SupremeCourt's Olmstead decision to expandcommunity-based services and commu-nity living choices

● Proposed budget increase of $2.2 billionover five years for the Department ofHealth and Human Services to funddemonstration projects promoting com-munity-based services

● Signed an Executive Order to create"Community-Based Alternatives forIndividuals with Disabilities," directingagencies to require states to place quali-fied individuals with mental disabilitiesin community settings

● Created the President's New FreedomCommission on Mental Health

● Proposed to increase funding for theIndividuals with Disabilities EducationAct (IDEA) by $1 billion in 2005

Kerry, responding to the same question-naire, shared his pride in having been a co-sponsor of the ADA, and noted that in 1987he drafted the Technology to EducateChildren with Handicaps (TECH) Act.

More recently, he was an original co-sponsorof the Mental Health Parity Act of 1996.

Not surprisingly for a challenger, Kerrymakes bolder pledges. He says he will seekout qualified persons with disabilities toserve throughout his administration. Kerryalso says he would:

● Fully fund IDEA and work for strongenforcement and real compliance withthe law

● Reinstate President Clinton's executiveorder to hire 100,000 qualified individ-uals with disabilities as federal employ-ees over the next five years

● Fully implement the Olmstead decision● Work to implement the Medicaid

Community Attendant Services andSupports Act (MiCASSA) and theMoney Follows the Person Act

● Work to eliminate the two-year waitingperiod to become eligible for Medicare

● Make ADA enforcement a top priorityfor the Department of Justice

President Bush has severely restrainedFederal funding for therapeutic stem cellresearch (see Paralysis, Politics, and Stem CellResearch, Page 15). John Kerry supports lift-ing the ban. While this is not an issue thatthe disability community is of one mind on,the focus on stem cell research's potential tocure or treat disabling conditions has beenstressed by its supporters, including RonReagan, who spoke on the topic at theDemocratic National Convention, where hewas introduced by Democratic Rep. Jim

Langevin, a Rhode Island congressman withquadriplegia.

The positions the 2004 candidates haveposted on their campaign websites are apublic statement of their priorities. Kerryhas provided several disability-specificlinks, including his comments to theADAPT/Free Our People Rally last fall, inaddition to his disability policy platform.The Bush campaign has not posted any-thing on its website about disability out-reach as of Sept. 1. There was not then asingle mention of the New FreedomInitiative on the Bush campaign website,though it is on the White House site.

With one-fifth of the population havingdisabilities and many more directly affected,no candidate should ignore this group.Kerry, Bush, and their campaigns seemaware of this. Bush cannot afford to lose thedisability support he has, and would benefitif he can expand it. Kerry has incentive toopen his lead and, more critically, inspirepeople with disabilities to vote, since theyseem to favor him over Bush.

Only 41 percent of voting aged peoplewith disabilities cast ballots in 2000. If 50percent had, and their split had remained 56percent for Gore, he would have won theelectoral college. Does the disability votecount? It did in 2000. It does in 2004.

Brewster Thackeray, a writer on dis-ability issues, is Vice President ofCommunications & Government Affairs atthe National Organization on Disability inWashington, D.C.

Continued from page 1

2004's Candidates Are Reaching Out to the Disability Vote

MMiiCCAASSSSAA - TThhee MMeeddiiccaaiidd CCoommmmuunniittyy AAssssiissttaanncceeaanndd SSuuppppoorrtt AAccttSenate Bill S.971, (House of Representatives versionof MiCASSA H.R.2032)www.adapt.org/casa/S971.htmMiCASSA is a Medicaid reform act to require statesto make monies available to qualified recipients forcommunity-based services rather than being forcedinto institutional settings.

MMoonneeyy FFoolllloowwss tthhee PPeerrssoonn ((MMFFPP)) AAccttwww.adapt.org/casa/update.htmSenate Bill S.1394, MFP calls for demonstrationprojects for community based services.

IInncclluussiivvee HHoommee DDeessiiggnn AAcctt ooff 22000033House Bill H.R.2353www.accessiblesociety.org/topics/housing/visitabili-ty.htmlA "Visitability" bill to provide a degree of housingwith at least one accessible entrance, wide enoughdoors and halls for wheelchair passage, and a usableground floor bathroom. This would apply to all sin-gle-family home construction receiving federal funds.

MMEDICARE ""HHOMEBOUND RRULE"" PPOLICY CCHANGEDept. of Health and Human Services, www.amendhomeboundpolicy.homestead.comMedicare currently will refuse home-based services topeople who spend too much time outside of thehome or are found to be able to drive, among otheractivities considered to affect their status.

TThhee CCiivviill RRiigghhttss AAcctt ooff 22000044 ((FFaaiirrnneessss AAcctt)) Senate Bill 2088 (House of Representatives versionH.R.3909)www.movingideas.org/blitz/fairness.html This broad-based civil rights bill for all minoritygroups includes punitive damages for intentional dis-crimination for violations of the ADA and Section504 of the Rehabilitation Act. It also provides stu-dents with disabilities protection against unlawfulharassment.

Federal Disability LegislationCurrent Bills at Play in Congress

Disability Policy Information Web SitesThis is a brief listing of policy related sites, many of whichinclude links to more information.

ADA Watchwww.adawatch.org

Access Boardwww.access-board.gov

ADAPTwww.adapt.org

American Association of People with Disabilities www.aapd-dc.orgConcrete Change

www.concretechange.org Disabled Peoples' International

www.dpi.orgDisability Rights Education and Defense Fund

www.dredf.orgNational Council on Disability

www.ncd.govNational Council on Independent Living

www.ncil.orgNational Organization on Disability

www.nod.orgNot Dead Yet

www.notdeadyet.orgThe Center for an Accessible Society

www.accessiblesociety.orgThe Ragged Edge

www.ragged-edge-mag.comU.S. Department of Justice

www.ada.gov/newsltr0604.htmWorld Institute on Disability

www.wid.org

7Fa l l 2004

By Jim Ward

When President George H.W. Bushsigned the Americans withDisabilities Act into law in 1990, he

said this landmark law would enable every-one with a disability to “pass through once-closed doors into a bright new era of equal-ity, independence, and freedom.”

To a degree, this has indeed come topass. People with disabilities — and allAmericans — have reaped major benefitsunder the ADA. Sidewalk curbcuts permitfreer access not only for wheelchairs but forstrollers and bicycles. Train and subway plat-forms include textured surfaces for peoplewhose vision is impaired — and those whomay just be distracted. Audible street signalsremind all of us when to cross safely.

These and other ADA-related changeswelcome all citizens into the public square.Yet fourteen years after its passage, hostileattitudes and persistent myths about thelaw — and those it protects — threaten toundermine further progress. These miscon-ceptions are fueled not just by individual

ignorance and prejudice but by well-financed political campaigns to eliminatethe ADA along with other labor, civil, andhuman rights protections.

Even though the President called theADA a “basic civil rights” law, his ownpolitical party in his home state wants todismantle it. The Texas Republican Partyrecently adopted a platform that “supports(an) amendment of the Americans withDisabilities Act to exclude many peoplefrom its legal safeguards, including peoplewith learning disabilities, HIV, behavioraldisorders, or mental stress.”

Ongoing campaigns from the rightwing would have us believe that businessesare the real victims. Quoted in the RecordSearchlight, California hotelier Bert Meyerblames the ADA saying, “It’s putting smallbusiness out of business and putting allretail into big boxes. If you’re not Wal-Martand you don’t have the deep pockets, howare you going to play this game?”

One might answer: By following thelaw and taking advantage of the tax creditsand other assistance that makes running anaccessible business very manageable. The

article also failed to mention the absence ofany data showing the ADA is actually clos-ing businesses.

But myths persist, including the falseperception that in its fourteen years theADA has removed all physical barriers. Infact, many stores, restaurants, and work-places remain inaccessible to those withphysical limitations.

Likewise for our system of justice. Tenyears after the ADA was enacted, a surveyin Missouri found that barely one out offour state court buildings complied withthe law’s standards for accessibility

This spring, the U.S. Supreme Courtconsidered the case of George Lane, aTennessee resident and paraplegic who wasforced to crawl up two flights of stairs toappear in court. The Court, by a close 5-4margin, upheld Title II of the ADA (whichaddresses public accessibility) only as itapplied to “cases implicating the accessibil-ity of judicial services.” Although a victoryfor this specific case, the narrow scope ofthis decision will allow our opponents tocontinue their attacks.

Nor have attempts at recourse underthe law been productive. A commission ofthe American Bar Association reported thatemployers won nearly 98 percent of the304 ADA employment-related cases decid-ed by federal courts in 2003. The Bar com-mission’s conclusion?: Federal courts are

interpreting the ADA in ways that “still cre-ate obstacles for plaintiffs to overcome.”

Opponents illustrate their argumentsby pointing to the empty accessible seat ina movie theater, the extra spaces in a park-ing lot, or the unused lift in a motel. Ratherthan being evidence of unneeded expendi-tures, these seats and spaces and lifts arewaiting for the people who are not yet ableto live in their communities. Shamefully,our government will pay for institutionalcare but not for needed community servic-es for the more than two million suchAmericans. As Stephanie Thomas ofADAPT says, “What good is the right to aramp or an equal opportunity to work ifyou are stuck away in a nursing home?”

Although attitudes about people withdisabilities are generally improving, mythsand ignorance linger. Hostile attitudes, likephysical barriers, can block the doors ofprogress from being opened wide. All toofrequently these same attitudes are held bythe judges, policymakers, employers andothers who impact our lives.

Fourteen years ago, we changed the law.Now, we must continue to change heartsand minds.

Jim Ward is president of ADA Watch andthe National Coalition for DisabilityRights, based in Washington, D.C.

The ADA 14 Years LaterMyths Persist, the Threat Remains

By Laurel Van Horn

While motorcoach travel is the mostaffordable mode of public trans-portation and often the only option

for rural residents, historically it has beenoff limits to individuals in wheelchairs. Butnow, with 48-hour advance notice, all busand tour companies must provide lift-equipped service on both scheduled routesand charters. This means that not only canindividuals who use wheelchairs travelfreely from city to city, but also join main-stream bus tours to popular tourist destina-tions around the country.

New Department of Transportation(DOT) regulations — which spell out theADA for the motorcoach industry — camefully into effect in October, 2002, and areknown as the Over-The-Road-Bus(OTRB) regulations. They specify not onlyvehicle accessibility, but also lease and pur-chase, service, training, and reportingrequirements. These vary according to acompany’s size and whether they providecharter or scheduled (fixed route) service.

For intercity travel, you first need todetermine which company handles theroute. In small towns, there is often onlyone carrier; in large cities, simply contactyour main bus terminal. Then, at least 48hours in advance, call to make your reserva-tion for a lift-equipped bus. Many compa-nies provide a free or discounted ticket for

a personal assistant at your request. Ifyour itinerary involves more than onecarrier, the first company transportingyou must notify the others that you willneed an accessible vehicle on their trav-el segments as well. They must also sendyou a standardized form confirmingyour request and, if there is any servicefailure, a written explanation.

Under the OTRB regulations, an“accessible bus” is required to have a liftand at least two wheelchair securementlocations. Lifts must also accommodate“persons using walkers, crutches, canesand braces, or who otherwise have difficultyusing steps.” Unlike airlines, bus operatorsmust allow oxygen canisters in passengerand luggage compartments, but may limitquantities.

While accessible onboard toilets are notmandated, passengers with disabilities mustbe assisted to get off and on the bus duringrest stops, even if this requires additionaltime. On express runs of three or morehours, if you need to request an unsched-uled rest stop, the driver “must make agood faith effort” to comply.

Small fixed-route carriers “can choose tooffer equivalent service to passengers withdisabilities,” using an alternative vehicle suchas a van so long as it allows you to travel inyour own mobility aid. This is not an optionfor charters or group tours since being isolat-ed in a separate vehicle would not be an“equivalent” experience.

Not until 2012, when the fleets of large,fixed-route carriers are targeted to become100% lift-equipped, will advance noticefinally be eliminated for the bulk of accessi-ble trips. For small fixed-route companies,however, the 48-hour rule will remain ineffect since, for financial reasons, they arenot required to purchase lift-equipped vehi-cles. Nonetheless, “if the request is madecloser to the time of travel than 48 hours,the operator must make a reasonable effortto locate an accessible bus.”

With charters and group tours, advancenotice is less of an issue since trips are typ-ically planned weeks or even months ahead.Instead, you need to be sure that the attrac-tions, restaurants, and lodgings on the tourwill meet your specific access requirements.The mainstream companies have littleexperience in booking accessible travel andsome, frankly, would rather not be both-

ered. If a tour company tells you that theydo not provide lift-equipped service, bepersistent and ask to speak to a manager.For your particular trip, they will need tocontract with a bus company that doeshave the accessible motorcoach you require.

Finally, the DOT rule specifies that thetraining provided to drivers cover not onlymaintenance and operation of lifts, but also“sensitive and appropriate interaction withpassengers with disabilities.” Aside fromGreyhound, which has worked hard todevelop appropriate training programs, theindustry is lagging in this regard. So youmay get a bus with a lift, but a driver whohas no idea how to operate it. New ADAtraining developed by Easter Seals ProjectAction will be offered in a series of region-al workshops for the industry.

Consumers with disabilities, too, couldbenefit from an educational campaign. Toomany potential riders, denied access for solong, remain unaware of their new rightsand opportunities. Hopefully, word willspread that motorcoach travel — so afford-able for people on tighter budgets — isnow just a phone call away.

Laurel Van Horn has specialized in accessibletravel since 1986. At Greyhound and ProjectAction, she helped to develop new ADA motor-coach training. She currently writes a monthlytravel column for Able News and is a programconsultant for Open Doors Organization.

TO LEARN MORE…

DDeeppaarrttmmeenntt ooff TTrraannssppoorrttaattiioonn, www.dot.gov,202-366-4000EEaasstteerr SSeeaallss PPrroojjeecctt AAccttiioonn, www.projectac-tion.org, 202-347-3066GGrreeyyhhoouunndd LLiinneess, www.greyhound.com,800-752-4841

Bus TravelNew Rights, New Opportunities

state of the ADA

8 Fa l l 2004

By Len ZandrowNSCIA Legal councel

T he right to vote is perhaps the mostcherished right in — and the hallmarkof — a democracy. In 1964, the U.S.

Supreme Court ruled in Wesberry v.Sanders that “no right is more precious in afree country than that of having a voice inthe election of those who make the lawsunder which, as good citizens, we mustlive. Other rights, even the most basic, areillusory if the right to vote is undermined.”

Despite the fundamental and sacrednature of this right, access issues have oftenmade disabled voters feel like second-classcitizens. As just one example, aPennsylvania court in 2001 reported thatonly three percent of Philadelphia’s 1,681polling places were accessible to votersusing wheelchairs. As a result, voters withmobility impairments could not cast ballotswhere their neighbors voted and wereforced to vote by absentee ballot or by alter-native ballot at accessible polling placesoutside their precincts.

One year earlier, 43 of 44 polling placesin upstate New York were deemed inacces-sible. In that case, the court cataloguedaccessibility problems in four areas: 1)parking, 2) pathways, 3) poll entrance, and4) the interior of the site. Parking accessi-bility deficiencies included insufficientaccess aisles to provide room to maneuverin and out of the vehicle, while pathwayproblems commonly involved non-levelsurfaces that made it difficult for peopleusing walkers or wheelchairs. An entrancewas considered inaccessible if it lacked aneeded ramp or featured a ramp withouthandrails, while an interior was noncom-pliant if its aisles were not wide enough forwheelchair use.

These problems at polling places are per-vasive. A Florida-based task force whichstudied voting procedures after the 2000presidential election estimated that 20% ofthe disability community was less likely tovote due to a lack of accessibility. Accordingto the task force, there are presently 33.7million Americans of voting age with dis-abilities. If all polling sites were accessible, anadditional 5 to 10 million of these disabled

persons would probably vote.Apart from access problems, confiden-

tiality represents a separate area of discrim-ination. Legislation to protect voters withdisabilities has proven inadequate. Since1984, the Voting Rights Act (VRA) and theVoting Accessibility for the Elderly andHandicapped Act (VAEH) have sought to“promote the fundamental right to vote byimproving access for handicapped and eld-erly individuals to registration facilities andpolling places for Federal elections.” Whenenacting this legislation, however, Congresscompromised the privacy of disabled votersby relying heavily on the use of third-partypoll workers despite the potential for influ-ence and manipulation. Six years later,Congress passed the Americans withDisabilities Act (ADA), which providesbroader protection from discrimination invoting. None of these laws, however, guar-antee disabled voters the right to cast secretballots without assistance like their able-bodied neighbors.

Technological advances offer new hopefor providing private, independent voting.A system manufactured by Hart InterCivicnow enables manually-impaired persons tovote without help via assistive devices. A”sip and puff” machine allows the voter tocast their ballot using only their breath. A“jelly switch” machine allows voters to acti-vate a two-inch round switch with a hand,finger, pencil, or other body part or instru-ment. The jelly switch is highly sensitive,requiring only a small amount of pressure.

A battleground state for voting rights,

as well as for this year’s presidential candi-dates, is Florida. The voting procedures inthis state have been under great scrutinyever since the 2000 election, when it tookfive weeks of legal maneuvering and somerecounting before Republican George W.Bush was declared president. Last year, dis-ability organizations challenged Floridaofficials’ decision to certify voting machineswhich did not permit manually-impairedvoters to cast ballots without assistance. Inan important ruling in August, 2003, aFederal District Court in Jacksonville sug-gested that voting rights may be subject totechnological advances. While access tothird-party poll workers may have satisfiedlegal requirements in the past, a broader useof sip and puff and jelly switch machinesmay eventually be required in order to per-mit people with disabilities to vote unassist-ed. In the Florida case, AmericanAssociation of People with Disabilities v.Hood, the court denied the defendants-officials’ motion for a legal judgment intheir favor and ruled instead that disputedissues of accommodation would have to bedecided by a jury trial. Appropriately, thatdecision would be left in the hands of thepeople.

Those who wish to register and vote inthe upcoming presidential election thisNovember 2nd and beyond should contactthe clerk’s office in their local city or town.Ask whether your local polling place is acces-sible and, if not, what arrangements are nec-essary to obtain an absentee ballot. Do notbe denied your most precious right.

Voting Rights and DisabilityIs Full Access Finally in Sight?

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11Fa l l 2004

By Janeen Earwood NSCIA board member

M any — if not most — people are hardpressed to imagine how anyone couldadjust to a life-changing event such

as a spinal cord injury. Two new books,using two different approaches, offer usinsights into the actual process of adjust-ment by taking a look inside the lives ofpeople with SCI/D.

From There to Here: Stories ofAdjustment to Spinal Cord Injury, editedby Gary Karp and Stanley D. Klein, Ph.D.,(2004, No Limits Communications,www.newmobility.com) is a collection of45 essays by people with SCI/D written intheir own words, leaving the reader to drawtheir own conclusions. Each story opensthe door into the intimate experience oreach storyteller, from the incident thatresulted in their injury, their journeythrough hospitalization and rehab, andthen the often tenuous re-entry into dailylife.

Still Lives: Narratives of Spinal CordInjury by Jonathan Cole (2004, MIT Press)is written in a more academic style and,using interviews with twelve people withSCI/D, he surveys seven components of the

adjustment process; Enduring, Exploring,Experimenting, Observing, Empowering,and Continuing.

In both books, the subjects speak oftheir struggles with great honesty — andhow they moved beyond them. In FromThere To Here, Mitch Tepper of Shelton,

CT, quadriplegic at C6-7 since1982 when he was 20 years old,wrote in his story, Beyond theFlagpole, “I used to cry everyyear on July 27, the anniversarydate of my injury. Then oneyear I forgot about it. I’dreached a point where the qual-ity of my new life trumpedwhat I had lost, and there wereno longer any strong emotionstied to that date.”

Many of the stories describea pivotal turning point in theirjourney. In Kris Ann Piazza’sstory, A Search for Self-Worth,about her quadriplegia at C5 in1980 at 12 years old, it was afight with her sister who toldher, “I’m sick of watching yougive up.” Kris threw her out, say-ing “I don’t need you, and I’ll beglad if you never come back!”After a night of “devastating”emotion, her sister returned, they apologizedand cried, and Kris “made a serious commit-ment to rehab from that point on.”

In Still Lives, Jonathan Cole is a con-sultant in clinical neurophysiology, on aquest to find the answer to the question,“What is it like to have a spinal cordinjury?” To answer this question he pairsthe 12 interviews into six comparisons. For

example, two men with the same level ofquadriplegia who are more than 20 yearspost-injury describe their lives, frustrations,and concerns. The stories are told in a com-bination of first person narrative by theperson with SCI/D, and then analysis bythe author of the subjects’ quality of life,happiness, job satisfaction, etc.

Julie Hill, injured at T9, describes herexperiences participating in early FunctionalElectric Stimulation (FES) trials, in whichshe was one of the first people in England toattempt walking using the lumbosacral ante-rior root stimulator implant system (LARSI).She describes her personal reasons for partic-ipating in the grueling efforts to succeed withthis research — and the media circus thatrevolved around the trials. She describes herphysical and emotional reactions in vividdetail, and discusses her broader outlook onher injury. “It is having the confidence to goout there, and not being dragged into a mireof disability, and focusing on what you cando, not what you cannot.”

The book is well-annotated, and refer-enced to literature and scientific journals.The author and all those interviewed areBritish, thus, the insights shared provide alook at healthcare in England and how it hasevolved (or failed to) over the last 20 years.

From There to Here feels like a bookintended for an audience of people withSCI/D and their loved ones. Still Lives, incontrast, feels like it was written with theintention of being of value to healthcareproviders as well, touching on clinical dis-cussion throughout the text.

By allowing us into the most intimateelements of the powerful experience of hav-ing a spinal cord injury — including sexu-ality, early thoughts of suicide, family rela-tionships, returning to aspects of their pre-vious life, or reinventing themselves —both of these important books offer valu-able insights and new perspectives that canhelp people through the lifelong adjust-ment to SCI/D.

Life After SCITwo New Books of Personal Stories

12 Fa l l 2004

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13Fa l l 2004

By Lyena Strelkoff,NSCIA contributor

"S aved" is a heartfelt, often hilariouscomedy about a born-againChristian teen trying to reconcile

her faith with the very "un-Christian" cir-cumstances of her life. Mary (fabulouslyplayed by Jenna Malone) asks Jesus to helpher save her boyfriend after he confides thathe is gay. When Jesus' plan gets Mary preg-nant, her faith begins transforming, creat-ing a schism among her group of friends.Among the teens involved is Roland, a sen-ior at Mary's high school, paraplegic sincethe age of 8.

I was disappointed that MacauleyCulkin was chosen to play this role. It'sfairly minor in the storyline, hardly requir-ing a "name" actor. And Culkin was unableto bring anything to it that a disabled actorcouldn't. With the opportunities so limitedfor actors with disabilities, it seems a shameto give this one to Culkin, especiallybecause he just isn't very good. When dat-ing the school outcast brings him into anew relationship with his disability, muchof the natural emotional response we in the

know might expect is missing or ambigu-ous. Being remarkably inexpressive, Culkinis definitely the weak link in a cast of oth-erwise fine actors. And his thighs are justtoo beefy!

But the representation of disability,itself, wasn't as shoddy. Hilary Faye, Queenof the Born-Again Teens and Roland's sis-ter (a spot-on Mandy Moore), is glorifiedby her friends for devotion and sacrifice inthe name of helping Roland. ("He's solucky to have you!") The group assumesthat Roland is helpless and worthy of theirpity. Such a response, though exaggeratedhere for comic effect, is unfortunately real-istic. But, in this case, it's also fun as thefilm clearly mocks such attitudes with itsover-the-top portrayal and Roland's sarcas-tic responses. For instance, Hilary's friendswonder, in horror, where Roland would beif his family had been Chinese and follow-ing local tradition, killed their girl childshortly after birth. Roland's response? "InChina." We get to see an alternate responseto disability in Roland's soon-to-be girl-friend, Cassandra, who is cautious at first,recognizing her ignorance, but unlike theothers, doesn't assume he is asexual, inca-pable, dependent, or mentally deficient.

"Saved" is also realistic in the way certaincharacters develop new understanding of lifewith a disability. Roland gains confidencewhen circumstances force him to spend an

afternoon on his own,and dating Cassandrahelps his disabilityassume a more propor-tional place in his life.Cassandra broadens herunderstanding by spend-ing time with Roland.Mary, inspired byCassandra's interest inRoland, evolves by ask-ing questions and spend-ing time with the pair. Itwas refreshing to seeMary and Cassandrataking responsibility for checking theirassumptions, rather than expecting Rolandto educate them. Understanding can begained, but not without challenging one'sown ignorance.

Unfortunately, the film does miss severaleasy opportunities to shed light on life witha chair. We never see Roland dealing withthe physical aspects of his disability. Henever moves his legs with his hands. Hisenvironment is thoroughly accessible (exceptfor a couple of curbs, which he handilyjumps). He never does a pressure release orhandles his chair. He learns virtually instant-ly how to drive with hand controls. And hedoes exactly one transfer, which looksauthentic enough thanks to camera tech-niques but fails to convey the frequency or

potential difficulty of transferring.All that said, I loved this movie. It man-

ages to be cheeky and poignant at the sametime, irreverent, while deeply faithful. Itdoes poke fun at born-again Christian teenculture and, to some degree, the religionitself. But it's message is not, ultimately,one opposed to faith. It's about the struggleto bring earnest faith into the context ofreal life, which is messy and difficult andconfusing. I, for one, appreciated the jour-ney and wasn't too distracted by the overlysimple representation of paraplegia.

Lyena Strelkoff is an actor, dancer, per-formance artist, and teacher, paraplegicsince October, 2002. She lives in the LosAngeles area.

Saved

By Erin Cornman

What if God was one of us? What if youcould speak to him (or her) in per-son? In an attempt to answer these

questions, CBS has entered its second sea-son of Joan of Arcadia. God actually mate-rializes in the form of different people eachweek and interacts with Joan to teach hermeaningful lessons so that she may passthose lessons on to others.

Joan is a teenage girl who is trying tofind her identity in the midst of her familylife. Her mother, a very appealing, compas-sionate person, is struggling to strike a bal-ance between her family — who have justmoved to the town of Arcadia — and herpassion for painting. Her father is a detec-tive who truly wants to help people, andher younger brother is a teen genius.

I would like to focus on her olderbrother, Kevin, a former high-school sportsstar who is facing the transition back intolife after acquiring a spinal cord injury in acar accident. I share the same injury — andthe life of a teenager — with Kevin.

The show portrays Kevin only one yearpost-injury. The manner in which he han-dles himself shows his insecurities. In Joan ofArcadia, we get to see that Kevin not onlyhas emotional issues concerning his SCI,

but also the emotional immaturities that hebrought with him to his paralysis. We getto watch Kevin find it easier to cope withhis disability through his interactions andexperiences.

In the third to last episode of the firstseason, Kevin accidentally encounters his ex-girlfriend, Beth. After Kevin’s injury, Bethhad not come to visit. He believes Beth hasbroken up with him because she would notbe comfortable with his paralysis.

Kevin doesn’t know that it was actuallyhis own drunken mistake that ruined theirrelationship by his taking off in a car onlymoments after he broke it off with her him-self. So when they meet again, Kevin dis-plays nothing but resentment toward her,making selfish, pitiful remarks, believingthat Beth was the culprit all along.

Kevin eventually learned that he wasmistaken, and chose to talk with Beth. Shewas very understanding, and became a men-tor of sorts to Kevin. By being matureenough to apologize, Kevin had learned halfof a very important lesson about interactingwith others; Beth taught him the second halfby reciprocating with compassion and for-giveness, able to step back without judg-ment. Kevin saw that he was still going tohave to handle the same kinds of problemsas any “normal” person would.

Joan of Arcadia does a spectacular job ofshowing us what life is like in reality for peo-

ple with disabilities because it uses these realfeatures of the emotional life of paralysis toconvey how we struggle to learn. It alsovividly portrays how wheelchair users can beactive and have productive lives. We seeKevin at the grocery store, working with hisDad to build a boat, and his efforts to findwork as a young reporter. Kevin is simplygoing through normal human experiencesand dealing with all of life’s issues. Eventhough he struggles with his emotions, wenever once see him give up on being active.

Through my own personal experiencewith the dynamics of disability, I know thatit is possible to overcome situations thatseem way too difficult to bother with. LikeKevin, I have youth on my side and therewill be many struggles ahead of me.Sometimes, being able to press on can seemlike much too steep a hill for a wheelchairuser, but it is imperative to remember thatthe same hill would be equally difficult towalk up. Another important point, cliché asit may be; having a disability does notchange who you are, or end your life. InJoan of Arcadia, the character of Kevin givesus an excellent reminder.

Erin Cornman, 16, lives in Carl Junction,Missouri. She has a spinal cord injury atT11-T12 from an automobile accident inAugust, 2001.

Joan of Arcadia

media commentary

His column also noted that support forthe ADA crosses party lines. He citedCongressman Pete Sessions and SenatorOrrin Hatch as staunch Republican ADAsupporters, and noted Senator Ted Kennedyand Chicago Mayor Richard Daley asDemocrats who strongly support integrationand independence for people with disabilities.

The poll results show that while there arestill significant disadvantages, there is margin-al progress for 54 million Americans with dis-abilities. In health care, transportation, andemployment, there is a slight increase innumbers from the 2002 poll. "In the last twoyears, employment for non-disabled peopledropped from 81 to 78 percent," notesThackeray. "For people with disabilities, itincreased from 32 to 35 percent."

Moreover, some industries are leading theway to include people with disabilities boththrough employment and technology devel-opment. Cingular One and Microsoft, forexample, have been cited as having proactivetechnology and employment programs, as hasNSCIA Business Advisory Committee mem-ber McDonald's (See "Golden Arches andGold Medals, Page 14). Darden Restaurantsis noted for extensive efforts to attract cus-tomers with disabilities.

For more information on theN.O.D./Harris Poll visit www.nod.org.

2004 N.O.D./HarrisPoll ReleasedContinued from page 1

14 Fa l l 2004

By Tari Susan Hartman,NSCIA Board Member

N SCIA is the only national disabilityorganization to organize a BusinessAdvisory Committee (BAC) to help

make the business case for marketing to andemploying people with disabilities.Spearheading the effort is Kevin Bradley,Director of Diversity Initiatives atMcDonald's Corporation.

Kevin has been a longtime leader andfriend of the disability community - as chairof the Employer Subcommittee of the formerPresident's Committee on Employment ofPeople with Disabilities and with the U.S.Business Leadership Network. NSCIA islucky to be able to tap into his enthusiasmand wise counsel.

Kevin feels fortunate to be working for acompany with such a disability-inclusive cor-porate culture that encourages innovativethinking. For the past 20 years, McDonald'shas held the world record for quantity and

quality of TV commercials featuring actorswith disabilities, was the first restaurant tocreate Braille menus, and has used innova-tions like the drive-thru concept (a greatoption for wheelchair users). Their visionaryMcJobs program to hire people with cogni-tive and physical disabilities jumpstartedindustry awareness in the area of employ-ment, and their Ronald McDonaldChildren's Charities (RMCC) help thou-sands of kids with disabilities and diseasesand their families every year in communitiesacross America.

Kevin saw more proof of this commit-ment to inclusive thinking after he met withthe Marketing Department to discuss theParalympics. They jumped at the thought ofincluding a Paralympic athlete during theirOlympics promotion. They teamed up andcreated a great, integrated campaign rampingup to the Paralympic Games in Athens,Greece which took place September 17-28,2004. Watch carefully, and you'll notice anew face amongst the world-class Olympicathletes featured in the McDonald's promo-

tional bags, cups, and tray liners. MeetParalympic athlete Marlon Shirley, anamputee runner, and the first to break the11-second barrier in the 100 meter dash.

Twenty years ago, the Wheaties cerealbox featured past NSCIA president DougHeir. Two decades later, The Golden Archeshave respectfully integrated an athlete with adisability into their current mainstream pro-motional campaign. This single disability-inclusive promotion has the potential to gen-erate millions of positive customer impres-sions, also affirming the degree to whichMcDonald's values the contributions of peo-ple with disabilities.

Integrating disability into their overalldiversity practices is nothing new forMcDonald's. Several years ago, McDonald'sCanada featured wheelchair racer Jeff Adamsafter he broke the world record for the 1,500meter wheelchair track event.

Says Kevin Bradley, "Featuring aParalympic athlete is not part of a "specialprogram." This is simply part of the

McDonald's culture of inclusion. When wetalk about diversity, we mean more than raceand gender. We are truly talking about inclu-sion around all dimensions of diversity. Thisis not the "nice" thing to do - it's the smartthing to do for our business."

The scoop from Doug Heir is thatMcDonald's is the very last restaurant out ofthe Olympic Village - they keep serving upburgers and fries (and salads as well) toParalympic athletes, families, and friends tothe last minute.

In addition to spearheading the forma-tion of NSCIA's BAC, McDonald's recentlyrevised their "Serving Customers withDisabilities" training video for new employ-ees, and they support Disability MentoringDay as well as a variety of other disabilityevents and initiatives.

And for all you movie buffs, RonaldMcDonald's film debut was Mac & Me in1988. This was the first major motion pic-ture to star a child actor with a disability -Jade Calegory, who has spina bifida anduses a wheelchair. Jade testified beforeCongress at the first ADA JointCongressional Hearings and later became aspokesperson for Easter Seals' "FriendsWho Care" awareness campaign.

To reinforce McDonald's innovativecombined Diversity Initiatives andMarketing Department promotion featuringParalympic athlete Marlon Shirley (and otherMcDonald's disability-inclusive initiatives),please take a few moments to callMcDonald's dedicated How are We Doin'?toll free number for customer comments at800.244.6227 and tell them how you feel.

Golden Arches and Gold MedalsParalympic Athlete Featuredin McDonald's Promotion

BAC profile

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15Fa l l 2004

By Don Reed

M icroscopic dots in a Petri dish —promise of cure, or the scene of acrime?

First isolated by Wisconsin scientist Dr.Jamie Thomson in 1998, embryonic stemcells have become the subject of often bit-ter debate. On March 1, 2002, at theReeve-Irvine Research Center at theUniversity of California at Irvine, I held inmy hands a laboratory rat which had beenparalyzed. When I set the rat down, itscampered around a plastic swimming pool— while my quadriplegic son Roman Reedwatched from his wheelchair.

The rat had been treated with humanembryonic stem cells. Naturally I wantsuch healing research to be adapted to helpmy son.

Stem cell collections (called “lines”) aremade from “leftover” embryos at In VitroFertilization (IVF) clinics as a byproduct ofefforts to help couples having difficultybecoming pregnant. Typically, moreembryos than required are produced, andthe unused, excess embryos are either frozenand stored, “adopted” by other couples,donated to medical science — or destroyed.

There are two kinds of cloning, repro-ductive and therapeutic. Reproductivecloning made Dolly the sheep — after the

death of literally hundreds of sheep. Theprocess is plainly dangerous to both moth-er and child, and there is wide agreementthat it should be banned.

Therapeutic cloning, however, is as dif-ferent from human cloning as the lightbulb is from the lightning bolt, used forproduction of stem cells only.

Initially, President Clinton had theNational Institutes of Health study theissues surrounding both therapeutic andreproductive cloning. Their recommenda-tion was clear and simple: human repro-ductive cloning should not go forward, butboth embryonic stem cell research andtherapeutic cloning for stem cells should beallowed and supported.

Due to conservative opposition,President Clinton came up with a compro-mise. The federal government would fundembryonic stem cell research, but only fromstem cell lines begun by non-federal dollars.

President Bush came to power, andsquashed the Clinton compromise, allowingfederal research dollars to be spent only onstem cell lines in existence as of August 9,2001. No more would be funded, ever.These limitations are strangling progress.The actual number of lines (between 19 and23) are grossly inadequate. Additionally, allthe presidentially-approved lines were fed onrat feeder cells, which may bring problemsof virus contamination. Some of them are

just getting old, and are no longer effective.The objections to making more stem cell

lines? Conservative religion, pure and simple.To those who hold these views, an embryomust never be broken, because it is a humanlife. Some faiths hold that life begins at theunion of sperm and egg; others that ensoul-ment arrives much later.

What if the whole controversy could beavoided by using a method which producesa limitless supply of stem cell lines withoututilizing a true embryo at all? Somatic CellNuclear Transfer (SCNT) makes stem cellswithout the use of sperm. If it were done formy paralyzed son, here’s how it would work.

First, a Q-tip would be swabbed acrossthe inside of his mouth, gathering skincells. One of these cells would be added toa human egg, such as a woman loses everymonth in her menstrual cycle. Stimulatedwith electricity, the modified egg wouldwait in a dish of salt solution for five toseven days, and then be taken apart for thestem cells, which would then be allowed tomultiply (but not grow or change) untilthere were 15-20 million of them. Theresult would be perhaps a spoonful of liq-uid, which would then be injected into myson’s spinal dura, the fluid-filled sac aroundhis spine.

There, we hope, new nerves will grow,reconnecting brain and body. And maybemy son will close his fingers again, or beable to shift his legs off the bed by himself.

Please note: in the entire process, thereis no sperm, no implantation in the womb— and absolutely no miniature humans.

Surely such a development would be wel-comed with joy by all sides?

Sadly, President Bush supports legisla-tion which would impose ten-year jail sen-tences and one million dollar fines on any-one involved in therapeutic cloning —patients and parents as well as doctors andscientists. If I took my son to England,where therapeutic cloning is legal and sup-ported by the government, we could bearrested on our return.

I can give you one hundred twenty-eight million reasons why we need thisresearch — the Americans who sufferincurable diseases or disabilities whichmight be alleviated or healed by embryonicstem cell therapies. When Nancy Reagan— who went through ten years of agonywith President Reagan’s struggle withAlzheimer’s disease — spoke in support ofstem cell research, she moved the nation,raising her voice in an unselfish act to helpothers.

People like my son. Christopher Reeve sent my family a letter

we will always treasure. It said: “One day,Roman and I will rise up from our wheel-chairs, and walk away from them forever.”

Stem cell research will help that greatdream become reality.

Don Reed sponsored California’s RomanReed Spinal Cord Injury Act, which has thusfar contributed $20 million to research forcure. He is a strong supporter of Proposition71, the California Stem Cells for Researchand Cures Initiative, www.YesOn71.com.

Paralysis, Politics, and Stem Cell Research

16 Fa l l 2004

CALIFORNIALeon S. Peter’s Rehabilitation CenterCommunity Medical Center FresnoP.O. Box 1232, Fresno, CA 93715Telephone: 559.459.6000 ext. 5783E-mail: rgreenberg@cmc.org Contact: Ray Greenberg

CALIFORNIASt. Joseph’s General HospitalSamuel Burre Conference Room2200 Harrison Ave.Eureka, CA 95501*sponsored by Tri-County ILCTelephone: 707.445.8404E-mail: richbsherry@yahoo.comContact: Richard Sherry

FLORIDAFlorida Rehabilitation and Sports Medicine5165 Adanson St., Orlando, FL 32804Telephone: 407.823.2967Contact: Robin KohnTelephone: 407.623.1070Contact: Carl Miller

FLORIDAHEALTHSOUTHSea Pines Rehabilitation Hospital101 East Florida Ave., Melbourne, FL 32901Telephone: 321.984.4600E-mail: ellen.lyons-lski@healthsouth.comContact: Ellen Lyons-Olski, Director, PT

FLORIDAHEALTHSOUTHCapital Rehabilitation Hospital1675 Riggins Rd., Tallahassee, FL 32308.5315Telephone: 850.656.4800Contact: JoAnna Rodgers-Green

FLORIDATampa Bay Area Support Groupc/o Florida SCI Resource CenterHealthsouth90 Clearwater Largo Rd., Largo, FL 33770Telephone: 800.995.8544 Telephone: 813.844.4286Fax: 813.844.4322Website: www.flspinalcord.usE-mail: info@flspinalcord.us Telephone: 727.586.2214Contact: Sherry Battress

GEORGIAColumbus SCI Support GroupTelephone: 706.322.9039Contact: Ramona Cost E-mail: rvcost@mchsi.com

GEORGIAHEALTHSOUTH Central GA Rehab Hospital3351 Northside Dr., Macon, GA 31210Telephone: 800.491.3550, ext. 643 Telephone: 478.471.3500, ext. 643 Fax: 478.477.6223Contact: Kathy Combs

MARYLANDKernan Hospital SCI Support GroupKernan Hospital2200 Kernan Dr., Baltimore, MD 21207Telephone: 410.448.6307 Website: clubs.yahoo.com/clubs/kernan-scisupportgroupE-mail: lmwilson123@yahoo.com Contact: Lisa Wilson

MISSISSIPPIMagnolia Coast SCI Support Group12226 Oaklawn Rd., Biloxi, MS 39532Telephone: 800.721.7255 Website: www.lifeofms.com E-mail: LIFEofCentralMS@aol.comContact: Michelle Bahret

MISSOURISouthwest Center for Independent Living2864 S. Nettleson Ave., Springfield, MO 65807Telephone: 417.886.1188 Telephone: 417.269.6829Website: www.paraquad.orgE-mail: mtrimble@swcil.orgContact: Marion Trimble

OHIOHillside Rehabilitation Hospital8747 Squires Ln.Warren, OH 44484Telephone: 330.856.5861 (H)Telephone: 330.856.4303 (W)Contact: Mike Logan Telephone: 330.841.3700Contact: Sue Joy

PENNSYLVANIAHEALTHSOUTHRehabilitation Hospital of Altoona2005 Valley View Blvd., Altoona, PA 16602Telephone: 800.873.4220

PENNSYLVANIAHEALTHSOUTHGreater Pittsburgh Rehabilitation Hospital2380 McGinley Rd.Monroeville, PA 15146Telephone: 800.695.4774 Telephone: 412.856.2584 E-mail: kristy.nauman@healthsouth.comContact: Kristy Nauman, P.T., CSIProgram Coordinator

PENNSYLVANIADelaware Valley Spinal Cord InjuryAssociation2610 Belmont Ave.Philadelphia, PA 19131Telephone: 215.477.4946Contact: Bruce McElrath

PENNSYLVANIAMagee Rehabilitation SCI Resource &Support Group6 Franklin Plaza, Philadelphia, PA 19102Telephone: 215.587.3174 Fax: 215.568.3736Website: www.mageepeers.orgE-mail: peercoordinator@mageerehab.orgContact: Marie Protesto

PENNSYLVANIAHEALTHSOUTH Rehabilitation Hospital of York1850 Normandie Dr.,York, PA 17404Telephone: 800.752.9675 ext. 820Telephone: 717.767.6941Contact: Lisa Schneider

TEXASDallas/Ft. Worth SCI Support Group3908 Ovilla Road, Ovilla, TX 75154Telephone: 972.617.7911E-mail: mranth29@aol.com Contact: Mike Anthony

WEST VIRGINIAWest Virginia Mountaineer Support GroupP.O. Box 1004Institute, WV 25112.1004Telephone: 304.766.4751 (W)Telephone: 304.727.4004Fax: 304)766.4849 E-mail: steveh@mail.drs.state.wv.usContact: Steve Hill

If you cannot find a chapter or supportgroup in your area, why not start yourown. Contact the National Office forassistance on our business line301.214.4006 or our Helpline:800.962.9629.

ARIZONAArizona United Spinal Cord InjuryAssociation901 E. Willetta, Ste. 2306, Phoenix, AZ 85006Telephone: 602.239.5929 Telephone: 877.778.6588Fax: 602.239.6268Website: www.azspinal.orgE-mail: info@azspinal.org Contact: Paul Mortenson

CALIFORNIALos Angeles Chapter, NSCIA311 N. Robertson Blvd., Suite 823Beverly Hills, CA 90211Telephone: 310.553.4833Fax: 310.230.0999E-mail: peers@westworld.comContact: Paul Berns, M.D.

CALIFORNIAWYNGS, NSCIA7900 Nelson Rd., Panorama City, CA 91402Telephone: 818.267.3031 Fax: 818.267.3095Website: www.wyngs.orgE-mail: wyngs4sci@msn.com Contact: Michele Altamirano

CONNECTICUTConnecticut Chapter, NSCIAP.O. Box 400, Wallingford, CT 06492Telephone: 203.284.1045Website: www.sciact.org E-mail: nscia@sciact.org Contact: Bill Mancini, President

DISTRICT OF COLUMBIASCI Network of MetropolitanWashington,NSCIAPlaza West 9, 51 Monroe St.Rockville, MD 20850Telephone: 301.424.8335Fax: 301.424.8858Website: www.spinalcordinjury.netE-mail: stevetowle@cs.comContact: Steven Towle or Don Woodruff

ILLINOISSpinal Cord Injury Association ofIllinois 1032 South LaGrange Rd., LaGrange, IL 60525Telephone: 708.352.6223Fax: 708.352.9065Website: www.sci-illinois.orgE-mail: spinalcordinjury@sbcglobal.netContact: Mercedes Rauen

INDIANACalumet Region Chapter, NSCIA2109 Cleveland St., Gary, IN 46404Telephone: 219.944.8037Contact: Lucille Hightower

KENTUCKYDerby City Area Chapter, NSCIA1518 Herr Ln., Louisville, KY 40222Telephone: 502.589.6620E-mail: dallgood@calky.orgContact: David Allgood, President Telephone: 502.425.2206Contact: Adam Ford, Vice President

MASSACHUSETTSGreater Boston Chapter, NSCIAHEALTHSOUTH, New England Rehabilitation HospitalTwo Rehabilitation Way, Woburn, MA 01801Telephone: 781.933.8666 Fax: 781.933.0043Website: www.sciboston.com E-mail: sciboston@aol.comContact: Ellen K. Philbin, E.D.

NEW HAMPSHIRENew Hampshire Chapter, NSCIAP.O. Box #197, No. Salem, NH 03073Telephone: 603.479.0560 Fax: 928.438.9607Website: www.nhspinal.orgE-mail: lthompson@nhspinal.orgContact: Lisa Thompson, President

NEW YORKNew York City Chapter, NSCIA 17 Kinross Pl., New York, NY 10703Telephone: 212.659.9369 Fax: 212.348.5902Contact: James CesarioE-mail: nycscia@yahoo.comTelephone: 914.969.7257 (H)Telephone: 914.325.3059 (C)Contact: John Moynihan

NEW YORKGreater Rochester Area Chapter, NSCIAP.O. Box 20516, Rochester, NY 14602Telephone: 585.275.6097Contact: Karen GenettTelephone: 585.275.6347Contact: Kathy Flannagan

NORTH CAROLINANCSCIA3701 Wake Forest Rd., Raleigh, NC 27609Telephone: 919.350.4172E-mail: dmyers8@triad.rr.comContact: Deborah Myers E-mail: kvasquez@wakemed.orgContact: Karen Vasquez

OHIONorthwest Ohio Chapter, NSCIA10271 Roachton Rd., Perrysburg, OH 43551Telephone: 419.872.5347Website: www.spinalrap.org E-mail: nwonscia@hotmail.com Contact: Debra Ostrander, Treasurer

SOUTH CAROLINANSCIA South Carolina Chapter2009 Hampton St., Suite AColumbia, SC 29204Telephone: 866.445.5509 Toll free: 803.252.2198Fax: 803.376.4156Website: www.scscia.orgE-mail: 2kermit@bellsouth.net Contact: Kermit Short

TEXASRio Grand Chapter, NSCIAc/o Rio Vista Rehabilitation Hospital1740 Curie St., El Paso, TX 79902Telephone: 915.532.3004E-mail: RIOGRANDENSCIA@aol.com Contact: Sukie Armendariz, Ron Prieto

VIRGINIAOld Dominion Chapter, NSCIAP.O. Box 8326 (1st Class mail only)Richmond, VA 23226Telephone: 804.726.4990E-mail: whlbound@comcast.net Contact: Shawn Floyd

WISCONSINNSCIA Greater Milwaukee Area Chapter 1545 S. Layton Blvd., Rm. 320 Milwaukee, WI 53215Telephone: 414.384.4022 Fax: 414.384.7820Website: www.nsciagmac.orgE-mail: nsciagmacwi@aol.com Contact: John Dziewa, President

NSCIA CHAPTERS

NSCIA SUPPORT GROUP NETWORK

17Fa l l 2004

Name

Street

City, State, Zip Phone

E-mail (very important, if available)

NSCIA Member Services901 East Willetta, Suite 2306

Phoenix, AZ 85006 Phone (602) 239-5929

Toll free (877) 778-6588Fax (602) 239-6268

e-mail: membership@spinalcord.org web site: www.spinalcord.org

The National Spinal Cord Injury Association (NSCIA) is anon-profit membership organization for people with spinalcord injuries, diseases and dysfunction, their families, theirrelated service providers, policy makers, organizations, hos-pitals and others interested in the issues affecting the spinalcord injury community. Our Mission is to enable peoplewith spinal cord injuries, diseases and dysfunction toachieve their highest level of independence, health and per-sonal fulfillment by providing resources, services and peersupport.

Become a Member Today. It’s Free!

JOIN OUR GROWING NATIONAL FORCEFOR CHANGE

PPlleeaassee cchheecckk mmeemmbbeerrsshhiipp lleevveell::

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✂cut out & return

I am interested in supporting NSCIA with:

■ Gifts of stocks or mutual funds

■ Gifts of real estate

■ Including NSCIA in my will

■ Check Enclosed■ Credit Card (Visa, Mastercard, Amer. Exp.)

Name on cardCredit Card #Expiration Date

My donation is $

■ Individual with SCI/D ■ Family member ■ Individual SCI Service Provider ■ Professional■ International (US Funds only)■ Silver (Org/Hosp, budget less than $1 million).■ Gold (Org/Hosp, budget greater than $1 million).■ Platinum (Org/Hosp, budget greater than $5 million)

By Erik Corbett

T he Paralympic Games took placeSeptember 17th-28th in Athens,Greece. At the able-bodied Olympic

Games, a men’s 1500 meter and a women’s800 meter wheelchair race was held imme-diately prior to the men’s 100 meter final,one of the premier events of the Games.The eight men and eight women who com-peted in the Athens demonstration eventwere selected at the event trials in Atlantajust prior to the Peachtree Road Race.Included in the field were Americans ScotHollonbeck and Cheri Blauwet.

However, American television audienceswere denied the opportunity to watch theseelite, world-class wheelchair racers competeon a worldwide stage. On the day of theevents the TV Guide description of theeight hour block of Olympic coverageincluded a listing for the wheelchair races.The NBC network had exclusive rights tocover the Games, but the races were notincluded, and no mention was made of theevent.

What makes this omission more disap-pointing is the fact that NBC had no plansto cover the Paralympic Games. The SaltLake City Winter Paralympic Gamesreceived same-day coverage via a nightly onehour wrap-up show on the A&E cablechannel. Apparently, in the last two yearsdisabled sports have gone from having verylittle commercial value to absolutely zerocommercial value in the minds of thebroadcasters.

Scot Hollonbeck, a veteran paraplegicracer and medalist, simply said that NBC,“missed a huge opportunity” by not airingeither of the Olympic wheelchair races.Canadian racer Jeff Adams said, “I thoughtthat the Olympics were a good venue to teardown stereotypes, discrimination and igno-rance. I was wrong.” An opportunity hasbeen missed.

When asked about the lack of televisioncoverage in America, Charlie Huebner,CEO of U.S. Paralympics replied, “Anytime a media opportunity doesn’t happenwhether it be regional, national or interna-tional, it is disappointing. However, muchlike numerous non-traditional Olympicsports to U.S. fans such as table tennis thatreceive little or no Games coverage, theParalympic movement must continue tofocus its efforts on developing strong grass-roots programs and investing in the devel-opment of elite performance plans to growthe movement. A perfect analogy is soccer,which has limited U.S. media reach, but thehundreds of thousands of kids playing soc-cer today in the U.S. make the sport rele-vant and vibrant to the American people.”

While Mr. Huebner is correct in identi-fying Paralympic sports as “non-tradition-al,” even soccer and table-tennis receivedsome coverage during the Athens Games.NBC aired a record number of hours ofcoverage of these events. They scheduledover 1,200 hours of coverage across six net-works, at some point covering every eventbut one — the wheelchair races.

I find it hard to believe that NBC could-n’t find 15 minutes to broadcast some of theclosest racing of the Games. WhileParalympic sports may not warrant a covet-ed spot on NBC’s primetime coverage, theseelite wheelchair race events were at least ascompelling as the table-tennis which war-ranted time on CNBC. Perhaps the powersthat be in the broadcast community willsomeday realize that they have failed to pro-vide their audience some excellent enter-tainment — simply because they haveremained stuck in old paradigms about dis-ability that have long ago been exploded bythese remarkable Paralympic athletes.

Erik Corbett, T7, is a road and ski racerstudying Business Administration at theUniversity of Massachusetts at Lowell.

Paralympic Moment Missed

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decided who best represents your interests?Have you determined which candidate willbest implement policies and programs mosthelpful to people with disabilities? We aredoing our best to help you in this veryimportant decision-making process.

Voting is one of your most preciousrights, not to be taken for granted. Registerto vote and know where your polling place isand arrange for transportation to get there.Volunteer to support the campaign of a can-didate who interests you. The candidates andyour neighbors need to see you and hear howthe candidates' positions affect people withdisabilities. They need to know why theseshould be their issues, too.

The SCI/D community represents a sig-nificant portion of the close to 40 millionpotential voters with disabilities across theU.S. Were we to register and then actually getout and vote for the candidates who best rep-resent the interests of people with disabilities,we could sway this election and demonstratethat the disability vote is a power to be reck-oned with. This is true in every election fromschool board to President.

Many undecided voters and those whohave not voted before are people with disabil-ities. People who have been disenfranchised,people who have recently accessed communi-ty-based services for the first time, peoplewho were never able to register to votebefore, and people who didn't have trans-portation or weren't able to access theirpolling place (See "Voting Rights and

Disability" by Len Zandrow, Page 8) makeup a large number of these potential voters. Ifyou are among them, you have a crucial roleto play in getting disability issues on theagenda before our political leaders.

Fourteen years after the Americans withDisabilities Act (ADA) was signed into law,I'm surprised that political candidates stilltreat people with disabilities as invisible.Indeed, there have been changes. Theyanswer questionnaires on disability and issueposition statements, yet in national speeches,candidates rarely mention persons with dis-abilities, failing to provide leadership for pro-grams and services that will foster our contin-uing societal integration.

Maybe the candidates have not heardenough from us. Your vote on November 2could change all that. The stakes for ourquality of life have never been higher. Wehave lost employment-based civil rightsthrough Supreme Court decisions on theADA. The Individuals with DisabilitiesEducation Act (IDEA) is ill-enforced —leaving children with disabilities behind inschools. Many more of us could be forced tolive in institutions. The federal budget istight and people with SCI/D — indeed all ofus with disabilities — could be casualties.

The late disability rights leader, JustinDart, Jr. said, "Vote as if your life dependedon it because it does." This statement wasnever truer than it is now. So do whatever ittakes to get to your polling place and vote onNovember 2, 2004. Let's make sure everyonefeels the power of the disability vote.

The Power of the Disability VoteContinued from page 5

callahan

By Dr. Alan Clarke

When I suffered SCI in 1991 (T12-L1complete), I was Dean of theChristchurch School of Medicine. I

fell (off my roof ) from an exciting positionin university medicine into The DisabilitySector. Thump! Like most other deans I

knew noth-ing aboutrehabi l i ta-tion or ofliving withdisability.

I know alittle morenow. In NewZ e a l a n d(NZ), therehab and

disability-support “industries” are woefullyunder-resourced. Because both are theresponsibility of the Health System, fewhealth professionals find them “sexy”, and forpoliticians they carry few votes. Spinalinjuries are dealt with in public hospitals.There is no competition amongst providers,therefore no choice for SCI folk.

NZ disability legislation was not theresult of strong popular movements as it wasin the U.S. It is a product of fifty years of wel-fare state. The Health and Disability Act1991, and the Human Rights Act 1995, haveboth been modified a number of times.Health reforms in 1991 introduced public(State) hospitals to market forces requiringthem to compete for performance based con-tracts, where performance was measured bythe extent to which needs were addressed,and by outcomes for patients, not by whatdoctors thought. Suddenly rehab and disabil-ity support found they were on a level play-ing field with brain surgery for resources.Then the government changed again andnow we are back to centrist control andmuch less competition and choice. Publicproviders and professionals however werechastened by the reforms and now they listento us much more.

New Zealand’s rehabilitation services areinefficient and controlled by the health pro-fessions. They are not consumer responsive.For this reason, in Christchurch we havebeen attracted to the IndependentLiving/Disability Rights (IL/DR) paradigmof rehabilitation first proposed in 1979 byGerben DeJong (currently at the Universityof Florida in Gainesville). This is consumer-controlled rehab — can you believe it!? Wehave branded this “The New Rehabilitation”of which John Ashton (UK) says,“Professionals must give away power. Theyare on tap, not on top!” Its pedigree is indirect line of descent from the IndependentLiving Movement in the U.S. from twentyyears ago which together with disabilityrights laid the foundations for your

Americans with Disabilities Act 1990. Thereis the connection!

The New Rehab starts on day one,requires the owner of the injury and majorstakeholder in outcome to be “Chairman ofthe Board,” and make strong policy deci-sions. Rehab is not a medical process,although medical support is of course neces-sary. It is a process of learning — informationintensive care. The IL goal is “to be fulfilled,happy, independent, in control of (our) lives,and not wishing to be either victims orheroes.” Life was not meant to be easy, but itis good.

Soon after doing my rehab in 1991 I gotto hear about “your” ADA and its precursors,the Civil Rights Act of 1964, theRehabilitation Act of 1973 and modifica-tions including “sections 501, 503, and 504.”Arising from strong popular movements,civil rights, independent living and disabilityrights are driven by vigorous, persistent andwidespread advocacy and lobbying. It isstrong appropriate law as good as anywherein the world.

However implementation of the law, andchanging society takes time. The implemen-tation agencies in the United States, DOJ,EEOC, FCC, and DOT appear to be doinga good job and my wife and I in our travelsfind it easier to manage in the U.S. than any-where else — except perhaps in NZ!

Society has taken a hundred years toimplement the hard won rights of women, atleast in the western world. Women havealmost “made it” and when society is com-pletely civilized and women are totallyincluded, feminism — the “other” F-word— could disappear because there is no moreneed for it. Likewise strong society, overtime, will celebrate human diversity, in placeof the concept of disability. The dreaded D-word, disability, may also shrivel and disap-pear, as there is no more need for it. I wish!

NZ Legislation is enlightened in a benev-olent way, but it not as strongly anti-discrim-inatory as is U.S. law. The current NZ gov-ernment has implemented a DisabilityStrategy intended to hasten inclusion. It iswell-meaning but patronizing, so “time willtell.”

What rehab service providers get awaywith under the law is however another can ofworms! Rehab providers in New Zealand getaway with more under the law with a regimeof centrist (government) regulation thanwhen consumers are able to exercise realchoice. I should be very interested to knowhow much real exploitation by providershappens in the U.S.A., and how it is con-trolled. It’s been nice talking to you.

Alan Clarke is the retired ExecutiveDirector of the New Zealand Spinal Trust,and Clinical Director of the BurwoodSpinal Unit. Currently he is Rehab Adviserto the General Manager, BurwoodHospital, Christchurch, New Zealand.

18 Fa l l 2004

A Southern Hemisphere PerspectiveA View from New Zealand

international view

By Pat Maher,NSCIA Board Member

NSCIA fulfills its mission of service topeople with SCI/D through anational network of chapters and

support groups. These ranges from small,local groups to large statewide organiza-tions supporting hundreds of members ormore.

If there is not a NSCIA group in yourarea, if you feel there are gaps in meetingthe local needs of people with paralysis,and you’ve got the energy and desire tomake a difference, here are the initialsteps to help you add a group to theNSCIA national network.

First think about how your groupwould function in your community. Themore clear you are about its intended focus,the greater your likelihood of being success.

NSCIA groups provide a wide arrayof services. Support groups generally pro-vide only peer support, and aren’trequired to meet some of the formal ele-ments of full chapter status such as 501c3non-profit status with the IRS. A chaptermight provide peer support as well, plusany or all of the following (or come upwith other great ideas of your own):

● SCI prevention programs — influenc-ing risk-taking behavior in young peo-ple through presentations in schools,social organizations, or scout troops

● Events — stage local conferences,plan trips or events

● Publications — produce a newsletterof information on local activities andnews related to SCI/D

NSCIA will provide you with a com-prehensive document titled “Starting aNSCIA Chapter or Support Group”

which details the startup process. Thisresource, among many other things, sug-gests the kind of people you might wantto approach to be part of your foundinggroup. For instance, we encourage you toseek people who can make unique contri-butions such as professionals from therehab or medical equipment industry, orsomeone with marketing and fundraisingskills — which will be invaluable. If you’reconsidering full chapter status, you’ll wantto consider asking an attorney or account-ant to offer some pro-bono help in settingup the necessary not-for-profit status ofyour group with the IRS. A well-roundedgroup of people will form the heart ofyour group, and get it off to a more hope-ful and successful beginning. At your firstmeeting, this NSCIA document will beuseful as a basis for discussion to solidifythe group’s vision and sense of sharedmission.

The document also includes a check-list to keep you oriented and moving for-ward in a deliberate manner, whileNSCIA supports you in your efforts. Wewill even waive your first year chapter feeso you can apply it to your 501c3 appli-cation costs.

As NSCIA Vice-President forChapters, I will support you every step ofthe way, as will other group leaders whowill be happy to share their experiences ofwhat made their chapter or supportgroup startup a success — and what pit-falls to avoid. Please contact me at pma-her@abilitylinks.org or by phone at (630)462-4529 so I can provide you with thestartup document, either electronically orin print. I’ll gladly answer any questions,and join you in exploring your vision fora NSCIA chapter or support group, andjoining us in our mission to foster qualityof life and opportunity for people withSCI/D.

Starting an NSCIA Chapter or Support Group

Fortune 500 companies through ourBusiness Advisory Council. Our goal is tobreak the obsolete, prevailing paradigm,and ensure that the corporate diversity per-spective includes people with SCI/D andother disabilities.

Both presidential contenders held cau-cuses with disability leaders at their partyconventions. NSCIA was there to helpmake sure that the needs of those of us withSCI/D and disabilities are on the agenda ofboth political parties.

I believe that people with disabilities aresavvy and will support companies andpoliticians who understand their needs,

employ them, and develop policy and out-reach strategies which serve them. In thecoming weeks and beyond, I want to urgeyou to make the effort to understand yourcandidate's position on specific issues thatimpact 54 million of us. And as NSCIAworks to ensure that our collective voices areheard, I also invite you to write a thank youletter to an employee, manager, or companyCEO who has impressed you in some areaof service, marketing and outreach, oraccommodation, while also letting themknow when your expectations were not met.The more we speak up, the more they'llhear us, and the more they'll see the benefitsof including us in their world view.

The Power of the Disability DollarContinued from page 5

19Fa l l 2004

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