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Vol. 2, No. 4September/October 2005

To fill the U.S. Supreme Court seat leftopen by the surprise retirement of JusticeSandra Day O’Connor, President

George W. Bush nominated Judge JohnRoberts. Upon the news that Chief JusticeWilliam O. Rehnquist had died of thyroidcancer on September 3 at the age of 80,Roberts’ nomination was upgraded to thatof Chief Justice. President Bush, as of thiswriting, has yet to nominate someone else toreplace Justice O’Connor.

Senate hearings during the week ofSeptember 12 indicate that Roberts is like-

ly to be easily approved. The disabilitycommunity, however, is expressing deepconcerns about the potential impact ofRoberts’ future role on the court, which hasnot generally been kind to the AmericansWith Disabilities Act, our flagship civilrights law. During the course of the com-mittee hearings, questions arose regardingthe Americans With Disabilities Act andprevious Supreme Court rulings — someof which Roberts was involved in as anattorney in front of the court, yet the dis-cussions rested largely on matters of proce-

dure and complex points of law that madeit difficult to discern Robert’s actual feel-ings on disability rights.

Conservative Americans were hopefulthat President Bush would appoint some-one who would further reinforce theiragenda, particularly with regard to abor-tion, prayer in schools, the death penalty,and other such frontline issues. Bush hasevidently nominated a candidate aboutwhom neither conservative or liberalobservers can assuredly say they can pre-dict his positions, just as JusticeO’Connor herself proved a surprise in tak-ing each case on its own merits rather thandeciding from a consistently conservativeperspective. She was appointed by then-President Ronald Reagan.

Judge Roberts has conservative creden-tials, not the least was having been a law

Disability and The Supreme CourtThe John Roberts Nomination and SCI

Continued on page 8

By Janine Bertram Kemp

N SCIA joined the Disability RightsEducation and Defense Fund, ADAPT,Lockheed-Martin, Comcast, and many

other organizations and businesses in spon-soring an ADA Watch/ National Coalitionfor Disability Rights (NCDR) Concert cele-brating the anniversary of the Americanswith Disabilities Act. NSCIA is one of over100 national, state, and local members ofADA Watch/NCDR, which was formed in2001 to work to save the Americans withDisabilities Act from attacks by business,Congress, and the Judiciary. NSCIA CEOMarcie Roth has served on the ExecutiveBoard of NCDR since its inception.

The Disability Rights Concert was heldon June 21, 2005 at the Strathmore MusicCenter in Bethesda, Maryland, a model of

accessibility in theaters since it opened inFebruary, 2005.

1500 people attended the concert, thekickoff event for thefifteenth anniversaryof the ADA on July26, 2005. It was thefirst time in the his-tory of disabilityrights that GrammyAward-winning starshad donated theirtime in support ofmaintaining thehard won gains ofthe movement.

Artists SweetHoney In The Rockand Bruce Hornsbyperformed. SoloistHornsby, who for

some time performed regularly with TheGrateful Dead, is a virtuoso pianist whosings his own compositions, conveying arange of moods including humor, anger,and sadness.

Activism is nothing new to Hornsby.

NSCIA Co-Sponsors Disability Rights Concert

Continued on page 7

NSCIA CEO Marcie Roth with Bruce Hornsby and Ms. WheelchairAmerica, Juliette Rizzo. Photo by Brewster Thackeray.

Hurricane Katrina ImpactsPeople With Disabilities

A s SCILife goes to press, we have limitedinformation on the impact ofHurricane Katrina on the SCI/D and

broader disability communities. It is clear the impact is substantial. The

Center for Independent Living in Biloxi,Mississippi was destroyed and other facili-ties were severely damaged. One early chal-lenge has been to locate people with dis-abilities and determine their needs. Manyneed medication, medical equipment orsupplies. Some communities to which sur-vivors are being relocated have limitedknowledge of, or access to, services for peo-ple with disabilities. And there are disturb-ing reports of discrimination and lack ofaccess to services in shelters.

Substantial efforts on the part of the dis-ability community are already underway.Examples include creation of a new web siterich with resources at www.katrinadisabili-ty.info, and a high level of email traffic hashelped broadly distribute information andrequests for help throughout the country.

Some organizations have started to organ-ize through email and teleconferences. Forexample, NSCIA Executive Director andCEO Marcie Roth organized leaders fromacross the disability community within aweek of the hurricane striking. This broughttogether officials from the disability commu-nity and the federal government to centralizeinformation about how disability organiza-tions may provide assistance to the reliefeffort and to influence fast moving decisionsabout housing, Medicaid and other federalprograms. Workgroups are being set up toobtain and channel financial resources, as wellas to identify ways individuals and organiza-tions can provide assistance in the affectedareas by way of disability-related expertise andtechnical assistance.

NSCIA Affiliates are connecting peoplewith resources and information for survivorswho have been relocated. Individual membersof NSCIA have already asked us how they canhelp. Current information on how best to dothat can be found at www.spinalcord.org andwill be updated regularly. We encourage youto pass this along to those who are not mem-bers of NSCIA.

Look for a full report on Katrina in theNovember/December issue of SCILife.

Judge John G. Roberts (c.), likely successor to Chief Justice William Rehnquist, leaving retiring Justice Sandra Day O'Connor's seat yet to fill.

2 September/October 2005

3September/October 2005

SCILife is dedicated to the presentation of news concerningpeople with spinal cord injuries caused by trauma or disease.We welcome manuscripts and articles on subjects related tospinal cord injuries or the concerns of persons with disabilitiesfor publication, and reserve the rights to accept, reject, or alterall editorial and advertising materials submitted. Manuscripts and articles must be accompanied by a selfaddressed stamped envelope if return is requested. Items reviewed in New Products Announcements and advertis-ing published in SCILife do not imply endorsement of organiza-tions, products or services.

SCILife is a publication of the National Spinal Cord Injury Association

SCILife STAFFEEXXEECCUUTTIIVVEE EEDDIITTOORR:: Gary KarpDDEESSIIGGNN AANNDD LLAAYYOOUUTT:: Nikolai AlexeevAADDVVEERRTTIISSIINNGG SSAALLEESS:: Joyce Parker DDAATTAA IINNPPUUTT:: Bonnie J. Haynes

NSCIA NATIONAL OFFICE STAFFCCHHIIEEFF EEXXEECCUUTTIIVVEE OOFFFFIICCEERR:: Marcie Roth CCHHIIEEFF OOPPEERRAATTIINNGG OOFFFFIICCEERR:: Eric LarsonRREESSOOUURRCCEE CCEENNTTEERR MMAANNAAGGEERR:: Charleene FrazierDDEEVVEELLOOPPMMEENNTT CCOONNSSUULLTTAANNTT:: Deanna AckermanRREESSOOUURRCCEE CCEENNTTEERR AASSSSOOCCIIAATTEE:: Daniela CastagninoRREESSOOUURRCCEE CCEENNTTEERR AASSSSOOCCIIAATTEE:: Downey HinrichsRREESSOOUURRCCEE CCEENNTTEERR AASSSSOOCCIIAATTEE:: Bill FertigMMEEMMBBEERRSSHHIIPP CCOOOORRDDIINNAATTOORR:: Julie DeFeaWWEEBB SSEERRVVIICCEESS//PPUUBBLLIISSHHIINNGG:: J. Charles Haynes, JDWWEEBBMMAASSTTEERR: Nikolai Alexeev

BOARD OF DIRECTORS EExxeeccuuttiivvee CCoommmmiitttteeeePPRREESSIIDDEENNTT:: Harley ThomasCCHHAAIIRR,, EEXXEECCUUTTIIVVEE CCOOMMMMIITTTTEEEE:: Janeen EarwoodVVIICCEE--PPRREESSIIDDEENNTT FFOORR MMEEMMBBEERRSSHHIIPP:: Pat MaherVVIICCEE--PPRREESSIIDDEENNTT FFOORR CCHHAAPPTTEERRSS:: Shawn FloydVVIICCEE--PPRREESSIIDDEENNTT FFOORR DDEEVVEELLOOPPMMEENNTT:: John FioritiTTRREEAASSUURREERR:: Jeff LeonardSSEECCRREETTAARRYY:: Susan Douglas, MDBBUUSSIINNEESSSS AADDVVIISSOORRYY CCOOMMMMIITTTTEEEE LLIIAAIISSOONN:: Tari Susan Hartman-SquireCCEEOO//EEXXEECCUUTTIIVVEE DDIIRREECCTTOORR:: Marcie Roth

DDiirreeccttoorrss Pamela Ballard, MDTapan Banerjee, Ph.D.Teresa Fausti BlattDavid Boninger, Ph.D.Milita Dolan Richard HolickyPaul MortensenChristine N. Sang, M.D., M.P.HCheryl Lady VinesGary J. Viscio, Esq.Suzanne Wierbinski

GGeenneerraall CCoouunnsseellLeonard Zandrow, Esquire

SCILife 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: 301.990.1265.Email us at info@spinalcord.org or go to www.spinalcord.org.

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SCILife © 2005

And… Action!By Gary Karp,Executive Editor, SCI Life

Four months after my SCI in July, 1973 Ibegan architectural school, having missedonly one term because of my injury. I was

eighteen, and arrived on campus on wheelsto discover that thebuilding where Iwas to spend mostof my time wasinaccessible; halflevel up, half leveldown. That aschool of architec-ture was such amodel of inaccessi-

bility was just an expression of the times;wheelchair access had yet to seriously enterthe conversation of the built environment.

Not going to school was not an option.So I sat by those stairs until I could recruitsomeone to give me a lift — which was to bemy experience for the next five years. Not sobad once I got used to it, actually. As I builtrelationships on campus the regulars justknew what to do when the time came.

I wrote a long letter to the chairman ofthe school, launched a campaign of articlesand cartoons in the school paper, got localTV news coverage, and kept bugging the var-

ious interested players in the campus admin-istration. They were generally supportivefrom the start, though wanted to know if Iplanned to stay in the program. The notionthat the building should generally be accessi-ble in any case didn’t occur.

There were a lot of logistics involved, butthe ramp finally got built and the liftsinstalled, allowing me a brief period of fullindependence on campus before I graduated— knowing I had paved the way for others.

Without action, nothing happens. If wedon’t try, we’ve given up — and denied our-selves the possibility of being surprised byhow much we can achieve. Even if it takesyears. Such was my experience at LawrenceTech in Southfield, Michigan.

There are passionate disability advo-cates everywhere you look, taking realaction to make a real difference. Just lookback at the leaps made by pioneers like EdRoberts, Judy Heumann, Evan Kemp, orJustin Dart, consider the ten SCI Hall ofFame inductees honored by NSCIA at ourrecent Summit on SCI in WashingtonD.C., or take the example of NSCIAPresident Harley Thomas who discusses hisrecent efforts to support SCI Trust Fundsin his column on page 5. NSCIA ExecutiveDirector Marcie Roth managed to beathuge odds and gain treatment in the U.S.for the spinal-cord-injured 12-year-oldIraqi girl, Ma’arwa Atawi. Action, indeed,pays off.

Taking Action is the theme of this issue,where we feature examples like throwing aconcert of star performers to celebrate theADA, suing a cruise line, riding the“Chunnel” between Paris and London, tak-ing up SCUBA diving, taking their SCI to

the theater stage, and fighting to get ruralhospitals to learn about SCI care.

In these months following the Summit,action is really the order of the day, andNSCIA knows that all the talk will be fornaught if we don’t follow it up with puttingour treads to the pavement and allowing ourassociation’s mission to be guided by what welearned last May in D.C. Marcie Roth lets usknow how the NSCIA agenda will live up tothat obligation in her column in this issue.

Any successful advocate will tell youthat action is born from passionate feelings.Thus the idea behind a new guest columnbeginning with this issue: From The Edge,inaugurated by Stephanie Thomas ofADAPT, an action taker extraordinaire. Welook forward to presenting a continuingroster of strong voices who say it like it is tohelp keep our blood boiling enough tokeep getting out there.

My ramp is still up there at the LawrenceTech School of Architecture, the originalbuilding now overshadowed by a new wingbuilt with full access. The symbolism is nowentirely positive and hopeful, the contrastbetween young Gary’s insistence on beingable to come and go on his own, against thenewly-built evidence that society has at lastgets that access matters.

That message could not have gottenthrough unless enough of us believed thataction mattered. And still does.

A closing note of apology to Tom Olin,whose excellent photographs of the Summitgraced the Summer, 2005 issue of SCILife.Sorry to have left your name off, Tom. We soappreciate your excellent work, and your his-toric role as photo documentarian of themodern disability movement.

from the editor

By Stephanie Thomas

A fter these many difficult and excitingyears engrossed in disability advocacy,there are two changes that I deeply

want to see. The obvious one is for peoplewith disabilities to be fully included in soci-ety. The other is to see people with disabili-

ties ourselves actually feel we are fully enti-tled to be a part of that society.

The past couple of decades have seen alot of change, but there is still a very longway to go. As society's negative messagesabout disability continue to bombard us,

we tend to internalize them and feel there issomething wrong with us; a self-fulfillingdownward spiral we must break. I’ve mettoo many people who think they are theproblem — feeling they take up too muchroom, are too much trouble, that they don’tdeserve whatever.

Way too often we allow ourselves toaccept the unacceptable. Why is somethingconsidered a "public" place or service —except that it doesn't let YOU inside orwon't serve YOU? — like a restaurant thatwon’t serve someone with a service animal,or a hotel that “loses” your reservationwhen they find you have a significant phys-ical or speech impairment. It isn't okay.Why is it okay that thousands of us areexpected to live out our lives in a nursinghome, when people just like us live in theirown homes? It isn't okay.

I've been called an outside agitator, atroublemaker, but did I make the trouble? Ididn’t build the inaccessible building, did-n't vote in the discriminatory policy. WhatI did was decide to stop cooperating withthe charade that everything is okay thisway. Sometimes, to cure a boil you have tolance it, and pus is going to come out!

Let's face it; if we don't think webelong, that we deserve a place at the table,why should anyone else? We can only findthe motivation and do what it takes tomake that happen when we truly believe webelong. We see ourselves and each other asthe solution — and we don’t put up withthe BS. We can be liked, get invited to the

wine and cheese parties and patted on thehead, or we can be perhaps not liked butrespected.

For me, direct action has been the mostpowerful tool available to achieve change inboth directions, internally and externally.We can only negotiate on a more equalbasis and move the status quo if we equal-ize things with organized direct action; get-ting people together. The members of thegroup get emboldened with moral support.Using the old adage, "two heads are betterthan one," helps us think and operate out-side the box.

Thinking outside the box and comingat a problem from a different angle is myfavorite part! For example, before theAmericans with Disabilities Act even exist-ed we wanted to make a local, downtownrestaurant accessible. We had asked andthey had ignored us. So during thelunchtime rush we set up a card table infront of the restaurant and covered it witha red and white checkered tablecloth, laid itout with paper plates and a meal of baloneysandwiches, and put up a big sign that said"Handicapped Seating Section". Therewere fifteen of us, and surprised customerstook our literature. Many spoke in supportof us to the restaurant staff — who wereeither sympathetic or were trying to get ridof us. The mood was tense at times; at oth-ers we grew lighthearted speaking out forourselves.

Pretty soon the owner showed up withsteam coming out his ears! We explained we

wanted to go inside and spend our moneyand eat his food. He said no can do, but aquiet little guy in our group piped up saying,"if you can decorate your business with a taxicab on the roof, you can put in a ramp." Theowner blinked a few times digesting this, andagreed to meet with us.

We had brainstormed how to handle themeeting, and decided to set a wheelchair inthe middle of the room with us in a circlearound it, leaving it the only place the restau-rant owner could sit. It balanced the powerrelationship, and his mood changed as herealized the sense of our requests. Eventuallyhe agreed and put in the ramp. Later hemade the restrooms accessible, brailled themenu, and sponsored a local radio readingprogram for people with visual impairments.

We’ve wrapped ourselves in red crepepaper at public hearings to illustrate the redtape that can tie us in knots. We’ve slept inGovernor's offices waiting for a promise tocreate a nursing home alternative. We’vesucked up our share of carbon monoxideblocking inaccessible buses. These tech-niques can be used for any issue — evenfreeing our people from nursing homes andother human warehouses. But the best partis doing these things with others and get-ting results, learning by doing that we actu-ally can make a difference.

Life is short. We have limited time andenergy. Why not have a good time, andspread the work around? Why not be cre-ative? And why not aim high to clean upsome of the cesspools in our society?

By Marcie Roth,NSCIA Executive Director

For all who participated, the SCI Summit2005™ and the inaugural SCI Hall ofFame™ provided an energetic boost —

which, for NSCIA, has strengthened ourcommitment to build bridges with everyoneinvolved. This post-Summit momentum is

both timely andessential; as wemove into plan-ning for SCISummit 2006,people with SCIand their fami-lies are lookingto us more thanever to helpthem advocatefor the changes

that will improve their lives and maximizetheir opportunities.

The Summit 2005 facilitated breakoutmeetings produced recommendations infive issue areas: community living, healthpromotion, technology, rehabilitation, andresearch. While advances are desperatelyneeded in the big picture of each of theseareas, change usually happens in small,structured increments.

Currently, we’re combining the reportsfrom each of those groups with commentsfrom our federal partners who attended the

Summit. These reports will be distributedto all of our SCI organizational partners,and then we will facilitate a meeting withthese partners to determine duties andleadership for actions related to each issuearea, and to determine where each of uscan place our expertise and resources inthe specific topic areas. We are alsodesigning a tracking plan and an ongoingcommunication plan.

This is part of the nuts and bolts workneeded to form an effective partnershipbetween groups committed to achieve sys-tems change. It’s how the big and small pic-tures integrate and, more importantly, howwe become an effective force for change.

Could this be our time, at last? Arewe moving towards the point in historywhen we can finally convince policymak-ers and others in society that people withSCI must have needed supports and serv-ices to build the lives they choose?Malcom Gladwell, author of The TippingPoint, argues that there is a moment intime where an idea or practice gains somuch momentum that it will be acceptedand implemented. He compares thisspread of the acceptance of an idea whosetime has come to an epidemic — itsspread is exponential. The HIV/AIDScrisis is an example; even though the cri-sis was evident early on, those working inthe field had to build towards the tippingpoint so that governments and policy-makers would take action towards posi-tive outcomes.

Sometimes we win, sometimes wereturn to improve on losses. Last year,NSCIA submitted strong commentsarguing for the federal Centers forMedicaid and Medicare Services (CMS)to implement regulations on Medicare

purchases of power wheelchairs. RecentlyCMS issued regulations requiring physi-cians to certify that a person needs apower wheelchair for use “in the home,”from the wrong belief that people withmobility impairments only need wheel-chairs that will allow them to move abouttheir homes. People with SCI need wheel-chairs for home but also for work, school,and leisure activities. NSCIA joined oth-ers to urge that this “in home restriction”be lifted. I assure you that we will contin-ue to work to change this and other lim-iting policies.

With SCI, the crisis is not even yetapparent. We have to create basic awarenessbecause most people don’t understand thecore issues. They think it’s fine, for exam-ple, that many with SCI are living in nurs-ing homes and don’t have the options ofwork, education, and other forms of socie-tal integration. Many believe finding a cureis the only priority and the only solution.

It is not enough for us to simply tryand move existing approaches forward.We have to create the foundations fornew and creative solutions that will allowus to build momentum towards our tip-ping point. Our job is to collectively cre-ate impetus and opportunity for the forcethat lets us “tip” to the “epidemic stage.”

NSCIA exists to work towards changesin society that assist people with SCI in lead-ing the lives that they choose. We remaincommitted to building bridges with all ofthe stakeholders — especially our brotherand sister SCI organizations — because ashared mission is critical to our success.

We are hopeful that the key groups willcontinue to “roll up to the plate” so togeth-er we can build the momentum that makeschange possible and success inevitable.

4 September/October 2005

Forward Into Actionfrom the executive director

PartnersWe gratefully acknowledge

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

MEMBER VALUE PARTNERS

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Action Outside the Boxfrom the edge

5September/October 2005

The ProcessLong but Worthwhile

By Harley Thomas,President, NSCIA

Over the past 15 years I have participat-ed in numerous disability coalitionsand advocacy groups seeking legislative

initiatives that sought to improve access tohealth care, trans-portation, hous-ing, and jobs forpeople with dis-abilities in generaland spinal cordinjuries in particu-lar. Rarely if everare we rewardedwith a quick and

easy resolution when we take the initiativeto change things. More often than not theprocess is long and drawn out, dependingon — or even despite — help from fellowadvocates and sympathetic legislators.

In 1998, while researching the leadingcauses of SCI in America, I found that over40% of all traumatic spinal cord injuries herewere the result of automobile accidents.Many times the driver’s use of alcohol ordrugs was a primary cause. I also discoveredthat a handful of states had laws in place

which required drivers receiving traffic tick-ets for speeding, driving under the influence(DUI), expired licenses, and various otherinfractions to pay a surcharge on top of theirticket. This money would go into a trustfund created to provide funding for variousSCI-related initiatives such as cure researchand SCI victim assistance.

Shortly after publication of an article Iwrote in Paraplegia News titled “SCI andthe Highway”, I received several calls fromindividuals looking for help to establishsimilar SCI Trust Funds in their states.Over the next six months I joined innumerous teleconferences and attendedmeetings around the country. I wasamazed to see how many people were eagerto generate activity at state levels for thecreation of more SCI Trust Funds for SCIresearch — including exploration of thepotential of stem cells.

Several such trips were to New York Citywhere a coalition was forming with the goalof providing administrative support to anygroup in any state wanting to promote anSCI Trust Fund initiative. The number ofstates was growing significantly where therewas either pending legislation or where peo-ple were working to win the support of a leg-islator to champion their cause.

At the same time here in WashingtonD.C., I was working with another coalitionattempting to gain congressional support forstem cell research. Meetings were held withleaders in the Senate and House, and hear-ings on the issue had begun in the Senate. InMay, 1999 I participated as a speaker in apress conference at the Capitol in an effort topromote funding for stem cell research at theNational Institutes of Health.

Here we are almost seven years later.During that time hundreds of individualshave advocated for both stem cell researchand State SCI Trust Funds. Have we madea difference? Have we accomplished ourgoals through our grass roots advocacy? Ibelieve we have. Although both issuesremain far short of their full potential, wehave definitely made significant headway.The number of states with SCI Trust Fundshas almost tripled since I wrote my articlein 1998, and, most noteworthy, the votersof the State of California approved a propo-sition for $3 billion to fund stem cellresearch over ten years.

As you likely know, NSCIA hosted SCISummit 2005, “Facing Issues, CreatingSolutionsTM” here in Washington in earlyMay, in partnership with the U.S.Department of Health and Human Services,Office of Disability Policy. Thirty-six barriersto full participation and inclusion of individ-uals with SCI were identified during theSummit. These are posted on the NSCIAwebsite, and may be viewed by going towww.spinalcord.org/links/summit_reports.

At the Summit, presentation of these bar-riers to sincere panelists from federal agencieswas only a first step in this often long, drawnout process to effect change. As members ofthe disability community, our recommendedchanges can only become reality throughcontinued grass roots advocacy such as I’vewitnessed with SCI Trust Funds. So I call oneach of you to get involved, working thisway on whatever issue is closest to yourheart. Contact your Representatives andSenators. Make your voice heard. Join withlike-minded advocates. Together we canmake a difference.

from the president

Susan DouglasDoctor, Lawyer-To-BeBy Richard Holicky

Susan Douglas wants to make a difference.That’s why she went to medical schooland became a doctor. It’s why she recent-

ly began working toward a law degree. Andit’s why she joined NSCIA.

Three years ago Douglas was looking tomake a contribution outside of medicine; shejust wasn’t sure what kind. So she contactedNSCIA, spoke to Executive Director MarcieRoth, and offered to help in any way shecould. Roth suggested she join the Board.

“As a physician, I’m constantly frus-trated with difficulties accessing qualitymedical care and know that other peoplemust be having an even harder time. Astrong support system was important forme and my family. NSCIA can be part ofthat support system, especially for peoplewith a recent injury.”

Susan recently began working with otherboard members to form a Medical andScientific Advisory Board of clinicians, scien-tists, and other professionals to serve as aclearinghouse for information about healthand well-being. A key purpose would be toshare solutions to the predictable problemswhich accompany SCI. “I’d like us to be ableto give more advice regarding all the medicalproblems and issues wheelers face,” she says.

Douglas, a T8 para, was 22 when her carskidded off a Washington, D.C. road anddown an embankment. She had also injuredher spleen, lungs, and ribs, and spent 10hours alone, wondering if she would surviveuntil she was found. She made it back tomedical school in less than a year, and servedas a trailblazer for others at GeorgetownUniversity; the year she left, a para wasadmitted as a first-year medical student forthe first time.

In the early 90s she moved to LosAngeles from Washington, D.C. fresh frommedical school, and began practicing neurol-ogy at UCLA, combining teaching, labresearch, and treating patients.

The best part? “The power of helpingpeople and having them trust me,” she says.

She feels strongly that the entire area ofSCI cure is another legitimate medical ques-

board member profile

Continued on page 13

By Deborah Myers

Just a few hours before we were to leavefor a family dinner, my boyfriend and Idecided to finish painting the trim on

our house. I stepped back from the secondfloor corner I was working on and fell tothe tile patio below. Result: a head injuryand incomplete T12 paraplegia.

For the better part of a year following myaccident, I stayed focused on rehab and myexercise program, which in time would setthe stage for development of an NSCIAchapter at home in North Carolina.

I felt a strong empathy with my SCI peers.Answers were not always readily available toan endless list of issues we were dealing with:insurance companies, transportation, accessi-bility, secondary conditions, pain, fatigue,equipment problems, supplies, researchupdates, and the need for social opportunitiesand creative outlets. Other clients were turn-ing to those of us who had already done someresearch; we did our best to share resourceinformation and offer support.

We also learned that our state did nothave a strong record with disability advocacy.Our hospital and rehab administratorsshared this view, so they approached me withthe idea of an SCI chapter.

The NSCIA Resource Center and othernational sources were helpful, but state-spe-cific resources took more research. Wouldn’t

it be nice to have this information all in oneplace? NSCIA had a strong reputationamongst therapists, hospital administrators,and individuals with SCI. As the ideabounced around, our vision for a state chap-ter grew stronger; to become a resource cen-ter which provided support, education, com-munication, and advocacy for individualswith SCI/D in North Carolina.

My professional background was in cus-tomer service and project management. I wasvery project orientated and a huge multi-tasker — all very useful in this process. SinceI was not yet back to work, development ofthe chapter allowed me to use my skills in anenvironment I could coordinate with mypersonal SCI challenges. I wanted to be partof an organization that could provide a lightat the end of a tunnel.

A core group with a mix of talents,interests, contacts, and strengths developedbetween my SCI peers, rehab profession-als, and hospital administrators, eventuallyforming the first board of the NorthCarolina Spinal Cord Injury Association(NCSCIA).

The NSCIA Resource Center was veryhelpful in identifying national contacts forchapter development and approval. Wereviewed other state chapter websites,talked to their board members, joined con-ference calls, and visited chapter offices. Ifrequently called Pat Maher, NSCIA V.P. ofChapters at the time, to bounce ideas offhim and confirm we were on the right

track. We also invitedboard members fromthe successful localMultiple SclerosisSociety organization totalk to us during ourinitial discussions.

We were passionateabout our commitmentto the SCI community,and began to identifyshort- and long-termobjectives. NSCIA pro-vided a step-by-stepguide for chapter devel-opment; drafting a mis-sion statement, establish-ing bylaws, and filing for 501c3 incorporation— helped along thanks to one of our boardmembers who put us in contact with a lawyerand CPA who did work for us pro bono.

Office space, a conference room, and aphone were donated by the rehab center. Anearly donation from the North Carolina CaseManagement Society of America (CMSA)provided funds for logo design, office sup-plies, web service, and mailing costs.

Once we completed the basic structureof our chapter, we talked about ways tointroduce ourselves and accomplish ourgoals of communication, education, sup-port and advocacy. We have established awebsite, www.NCSCIA.org — a commu-nication forum that we intend to eventual-ly become a print publication. We havesent letters to vendors, hospitals, and rehabcenters across the state, introducing our-selves, soliciting information, and invitingthem to our first conference.

Although we got caught by a tropicaldepression, our first conference — a pro-gram of speakers, concurrent sessions,lunch, vendors, and giveaways — attracted

65 people. It was four hours long, andearned very positive feedback; people ask-ing for a longer event and to do it soonerthan later. In July, 2005 we hosted our sec-ond conference, “A Day To Connect,”which attracted people from across thestate, rather than the more localized gather-ing we witnessed the first year, as well astwice the number of exhibitors.

Last February we hosted Sam Maddox,Knowledge Manager from the Christopherand Dana Reeve Paralysis Resource Center,who presented the workshop “Reasons forHope — Research Update. We've also con-tinued to network throughout the state,work with support groups, hold quarterlymembership meetings and membershipdrives, and will be starting monthly socialactivities. We hope to have our firstnewsletter out by the end of September.

We were awarded the Outstanding NewChapter Award at the SCI Summit 2005 inWashington D.C. Built on the reputationand guidance of the NSCIA national office,all of our hard work and desire to supportpeople with SCI is paying off.

6 September/October 2005

NCSCIA Board Members, rear, from left, Elaine Rohlik, Karen Vasquez,Kathy Thompson, Ping Holt, Debbie Johnson, Tim Whitener. Front, ArunChopra, Cheryl Cardella, and Debbie Myers.

A North Carolina Chapterchapter report

By Mark Nash, PhD, FACSM

What is a Lipid Profile?The lipid profile is a clinical test that

measures various cholesterols and fats thatserve important roles in metabolism (theconstant chemical reactions necessary foryour body to function normally). A typicallipid profile has various components; mostoften the profile measures the total choles-terol, low-density lipoprotein cholesterol(LDL, or “bad” cholesterol), and triglycerides(another fat found in the blood). The LDL isan important cholesterol fraction, as it accel-erates heart and vascular disease, and alsopredicts the extent to which individuals are atrisk for cardiovascular disease.

A complete lipid profile should includemeasurement of the high-density lipoproteincholesterol (HDL or “good” cholesterol), ashigh levels of HDL help to keep other fatsfrom being deposited on blood vessel walls.Measurement of the HDL is especiallyimportant for those with SCI, as low levels ofHDL represent the most common lipid riskfor this population.

Am I At Risk for An Abnormal Lipid Profile?About one in three American adults

without disability have a lipid profile in

need of improvement. Various factorshelp to clarify the risk imposed by yourlipid profile. Genetics play an importantpart; if your parents or grandparents hadhistories of heart and vascular disease, itis possible that you will have these prob-lems too. An abnormal lipid profile iscommon in people with elevated bloodpressure and diabetes, and those who eata diet high in saturated fat or who usetobacco products. Physical inactivity iscommonly associated with an abnormallipid profile and having low levels of the“good” HDL cholesterol.

What Role Does My SCI Play?About half of all persons with SCI have

at least one component of the lipid profilethat falls outside of the desired range. Variousfactors associated with SCI worsen the lipidprofile and increase the risk of heart and vas-cular disease:• Aging with SCI is of concern, as aging

increases the likelihood that you willdevelop heart and circulatory diseases.These diseases often occur earlier in thelives of persons with SCI, may occurwithout typical signs and symptoms ofimpending heart damage, and can makethe performance of daily activities morechallenging.

• Diabetes is common in persons withSCI, especially in persons who are over-weight or very sedentary. About 20-50% of persons with SCI have elevatedlevels of blood glucose that are typicalof diabetics.

• While persons with tetraplegia gener-ally have low blood pressure, many ofthose with paraplegia have elevatedblood pressure, which is strongly asso-ciated with abnormal lipid profilesand heart disease.

Do I Have a Lipid Profile Requiring Attention?The easiest way to find out is to have

blood drawn and your levels of choles-terols and lipids measured in a laboratory.An elevated LDL is commonly used as thebest predictor for disease risk. When ele-vated, LDL accelerates vascular diseasethat ultimately restricts the flow of oxy-gen-carrying blood to the heart. In gener-al, a healthy blood lipid profile shouldshow the following:• A total cholesterol less than 200 mil-

ligrams per deciliter of blood (mg/dL)to attain low disease risk, and below240 mg/dL to avoid high risk.

• An HDL greater than 40 mg/dL toreduce risk of disease.

• A ratio of HDL to total cholesterol(HDL: TC) less than 4.5 to avoid highdisease risk.

• An LDL less that 160 mg/dL to avoidrisk. If you are overweight, have elevat-

ed blood pressure or diabetes, have apersonal or family history of heart dis-ease, or use tobacco products, the LDLlevel may need to be below 130 mg/dL,and possibly below 100 mg/dL to min-imize your risk of developing sympto-matic heart or circulatory disease.

What Can I Do To Reduce My Risk?There are many measures you can take

to reduce your risk, starting with improv-ing your diet. Reduce calories from saturat-ed fat and increase the portions of leanmeats, fish, and complex carbohydratessuch as broccoli, grains, and potatoes. Andstop smoking.

Increase your level of daily physicalactivity — not always easy for persons withSCI, but a skilled therapist may be able tosuggest exercises.

Find out whether you have diabetes orelevated blood pressure. If diet and physicalactivity can’t correct these, talk to your doc-tor about being placed on medication tocontrol them

Certain prescription medications canimprove the lipid profile and may reducethe risks for heart attack and stroke. Thesemedications should be discussed with yourphysician, especially if diet and physicalactivity are ineffective in improving yourlipid profile.

For more information, please visit sci-health.org/publications/index.php andscroll down to Consumer Publications.

Cholesterol, Other Fats, and SCI

He said, “When I wrote the song, ‘The WayIt Is’, I wanted to move people to take astand on civil rights in this country.” TheWay It Is concerns housing segregation anddiscrimination in the United States, so thesong resonates deeply for people with SCIwho face a severe shortage of affordable,accessible housing.

Hornsby performed the main portion ofthe concert, and spoke of attempts to weak-en the ADA with cases such as Lane v.Tennessee, in which the State of Tennesseeattempted to claim that their courthousesdid not need to be accessible. He had beenappalled by the atrocity of a wheelchairrider having to crawl up courthouse steps tohave a case heard. Hornsby was adamantthat courthouses should be accessible.

Sweet Honey In The Rock is an AfricanAmerican female a cappella ensemble found-ed in 1973 by Dr. Bernice Johnson Reagon.They have deep musical roots in the sacredmusic of the black church — spirituals,hymns, gospel — as well as jazz and blues.The Sweet Honey experience is like noother; six African American women jointheir powerful voices, along with hand per-cussion instruments, to create a blend oflyrics, movement, and narrative that various-ly relate history, point the finger at injustice,

encourage activism, and sing the praises oflove. The music speaks out against oppres-sion and exploitation of every kind. Theseptet, whose words are simultaneouslyinterpreted in uniquely expressiveAmerican Sign Language, demands a justand humane world for all. Sweet Honeyclosed their set with Ella’s Song, which hasthe chorus “We who believe in freedomcannot rest until it’s come.”

Sweet Honey’s, Ysaye Maria Barnwellsaid, “We all need to save our civil rights.The 1964 Civil Rights Act was the begin-ning and the ADA is just as important. Allof us must work together for our freedom.”

Said Marcie Roth, CEO of NSCIA, “Formore than fifteen years, disability leadershave been asking civil rights leaders amongstAfrican Americans, women, and Latinos toarticulate and act on the ties between the1964 Civil Rights Act and the Americanswith Disabilities Act. No single civil rightsgroup can achieve quality of life, education,housing, employment and other humanrights on its own,” says Roth. “Too manygroups try to exclude others thinking they arefighting for their own little piece of the pie.But if we work together, the whole pie ofsocietal integration will belong to us all.”

Following intermission, there was ashowing of photojournalist Tom Olin’swork. Olin, who has been photographingthe disability rights movement since 1985,has had his images featured in theSmithsonian Museum of American Historycollection as well as numerous mainstream

and disability publications. Jim Ward, President and

Founder of ADA Watch andNCDR, narrated the collec-tion that began with the 1990signing of the Americans withDisabilities Act. Photosincluded people with SCI andother disabilities blockingbuses while carrying signs say-ing “We can’t even get on thebus,” sledge hammering thefirst Los Angeles 1985“People’s Curb Cut,” and get-ting arrested attempting toprovide choice to the2.000,000 people with disabil-ities locked away in nursinghomes and other institutions.

“Photographs from theOlin collection give the popu-lation a visceral understandingthat people with SCI andother disabilities need civiland human rights to live fulllives and reach their poten-tial,” said Ward.

While some disability advocates attend-ed the event, the vast majority of the audi-ence were fans of Bruce Hornsby and SweetHoney In The Rock. They knew nothingabout SCI or disability, making this an espe-cially “sweet” opportunity to spread themessage of disability rights further yet. Asdisability leaders circulated among the con-cert crowd, they heard repeated variations

on the comment, “I never understood whatdisabled people wanted. Now I see theywant the same things I do.”

This sort of understanding is rare. Manydisability policy makers stress the need forforums that convey the importance of civilrights and societal inclusion to the majorityof the population. This event was a primeexample, hopefully of more to come.

7September/October 2005

By Tari Susan Hartman-Squire,NSCIA BAC Liaison

T he last issue of SCILife highlighted theNSCIA Business Advisory Committee’sfour-part mission to build the business

case for reaching out to the SCI community,broaden awareness of SCI with businesses,partner with industry to support people withSCI, and provide a business perspective.

BAC members are also taking the lead intheir own companies and supporting thegrowth of our committee. This year theyplan to confirm the right participants, deep-en/broaden sector representation, documenttime investment, share best practices, differ-entiate NSCIA’s BAC from other disabilityorganizations, pick key focus areas, and pro-mote awareness of living with a SCI.

BAC Active Members in the NewsAs the nation celebrated the 15th

anniversary of the Americans with DisabilitiesAct on July 26, AOL, Cingular Wireless, andMitsubishi Electric America Foundation(MEAF) helped sponsor the ADA Gala inWashington, D.C., where corporate, politi-cal, and disability leaders converged to cel-ebrate this hard won victory. Access Boardchair Jan Tuck (Princess Cruises) and mem-ber Gary Talbot (Disney) also hosted pub-

lic hearings in D.C. that week.The Youth to Work Coalition (YWC),

a public/private interest group that encour-ages employers to provide internships andmentoring programs for youth with dis-abilities, was co-founded by the U.S.Department of Education and MEAF.YWC includes five federal agencies, andthirty companies, foundations, and non-profits (including BAC membersMicrosoft, Medtronic, Cingular Wireless,and McDonald’s). YWC’s second annualconference on July 27th focused on bestpractices and interactive dialogue betweenemployers and interns.

Motorola, Microsoft, and Medtronicsponsored the Sixth Annual CareerOpportunities for Students withDisabilities (COSD) Annual Conferencethis July, at Merck in Boston. The last twoCOSD conferences were hosted byMotorola and Microsoft.

Congratulations to Hewlett-Packard,recently named by DiversityInc. as“Number Three” in its Top Ten Companiesthat employ people with disabilities.Michael Takemura, director of HPAccessibility states, “HP has a long-stand-ing commitment to people with disabilitiesin the workplace. These employees con-tribute valuable talents and unique experi-ences to make HP a worldwide leader in

providing technology solutions to all of ourcustomers, including people with disabili-ties and age-related limitations.”

Building on the premise that a diverseand inclusive environment enables employ-ees to contribute to their full potential, HPfosters relationships with many communitynetwork organizations that act as advocatesfor persons with disabilities and providesongoing resources and facilities. HP collab-orates with these associations to promoteawareness and attract talent, and also part-ners with universities and assistive technol-ogy companies to design, produce, andmarket accessible products and services.

October is the kickoff for HP’s world-wide Disability Programs. Last year hun-dreds of HP employees from over twentysites in twelve countries became mentorsfor a day by participating in the fifth annu-al Disability Mentoring Day. FromCalifornia to France to Japan, HP employ-ees volunteered their time to give studentswith disabilities the opportunity to explorethe career possibilities at HP while provid-ing them firsthand experience and adviceon career planning and job hunting.

Some BAC member companies arebusy planning for this October’s NationalDisability Employment Awareness Month.While this year’s theme is “People withDisabilities are Ready for Tomorrow’s JobsToday,” BAC member companies exceedthe “job” expectation, by supporting peoplewith disabilities, including those with SCIto pursue and develop careers, not just get-ting a job.

Microsoft will host at least twenty stu-dents for Disability Mentoring Day,including an Access Event, Job Fair, andJob Shadowing Day done in conjunctionwith the University of Washington’s DO-

IT program. Last year, Microsoft and HPwon the New Freedom Initiative Awardfrom U.S. Department of Labor secretaryElaine Chao, and in 2003 CingularWireless won that coveted honor.

Once again Bank of America (BAC co-chair Annette Kellermann) will post anannouncement commemorating NationalDisability Employment Awareness Monthon the home page of the bank’s web site. Inaddition, this year, every Bank of Americaassociate will receive a mailer highlightingthe different ways people with disabilitiesinteract with the company; as associates,customers, and suppliers.

Medtronic will host “Minnesota CareerDevelopment for the 21st Century” withkeynote speaker with SCI, Jennifer SheehyKeller, who was recently appointed by thePresident as Special Assistant forEmployment to the Assistant Secretary of theOffice of Special Education andRehabilitation Services, and Acting DeputyCommissioner of the Rehabilitation ServicesAdministration in the U.S. Department ofEducation. This event targets people withdisabilities enrolled in post-secondary train-ing including college, university, or technicalschool, and those who have recently graduat-ed from post-secondary programs. FellowBAC members Microsoft and NorthwestAirlines are participating companies.

Thanks again to BAC sponsors of theSCI Summit/Hall of Fame. Platinum:Craig H. Neilsen Foundation, MedtronicFoundation Silver: Bank of America;Bronze: Acorda Therapeutics, AOL,Cingular Wireless, McDonald’s, Microsoft,Northwest Airlines Supporting: MitsubishiElectric America Foundation (MEAF),Quickie/Sunrise Medical, Pfizer, The sanofi-aventis Group.

NSCIA Co-SponsorsDisability Rights ConcertContinued from page 1

Sweet Honey In The Rock on stage.Photo by Brewster Thackeray.

NSCIA’S BAC Plans for OctoberDisability Employment Awareness Month

bac news

clerk for Chief Justice Rehnquist, one ofthe strongest conservative voices on thecourt. He worked in the Reagan adminis-tration as an aide to Attorney GeneralWilliam French Smith from 1981 to1982, and also for President George H.W. Bush His selection is considered deftby observers, who note his warm person-ality, summa cum laude graduation fromHarvard, and minimal public recordwhich would make it difficult forDemocratic senators to make a strong caseagainst his approval.

The court has generally been thoughtof as being in a delicate state of balancebetween the conservative and liberal per-spectives. With Roberts now evidentlymoving into the Chief Justice position,O’Connor’s replacement remains a signifi-cant open question since the person takingher spot can have a substantial impact onthe overall philosophical balance of thecourt. Many recent decisions of the courthave been close five to four votes, withO’Connor often the “swing” voter. Shemade the difference, for instance, in lastyear’s case of Tennessee v. Lane, grantingpeople with disabilities the right to suestates for physical access to courtrooms.

In one of the most influential casesdecided against the ADA was Toyota

Motor Manufacturing v. Williams, 534U.S. 184 (2002), in which Roberts, as anattorney, argued to the Supreme Courtthat the plaintiff did not qualify as a per-son with a disability under the ADA. Shehad developed serious carpal tunnel syn-drome on the assembly line and wasclaiming that Toyota did not provide herwith the reasonable accommodationrequired under the disability act.

As an associate White House counsel in1984, Roberts wrote an internal memoran-dum regarding Grove City College v. Bell,465 U.S. 555 (1984). The case involvedSection 504 of the Rehabilitation Actwhich obstructs the federal governmentand its contractors from discriminationagainst people with disabilities. Robertsagreed with the stipulation that only specif-ic departments receiving federal moneywere covered by the law, rather than theentire institution. The court agreed, butthis decision was overturned by subsequentCongressional action.

As a federal judge, in Three RiversCenter for Independent Living v.Pittsburgh Public Housing Authority, aCenter for Independent Living (CIL) wasbarred by a Roberts decision from filingsuit to hold a Public Housing Authorityaccountable for violating Section 504 ofthe Rehabilitation Act.

His past record of argument and deci-sion also includes examples restrictingaccess to Medicaid, to provision of signlanguage interpreting for a public schoolstudent, and Congress’ very power to passdisability and civil rights legislation.Roberts is a member of the FederalistSociety which has stated its desire to returnto policies pre-dating Franklin Roosevelt’sNew Deal, under which the Social Securitysystem was founded. The society has alsospecifically targeted the ADA. Roberts’membership does not necessarily indicatehis support of these positions, but hisrecord suggests he is sympathetic.

Jim Ward, founder of ADA Watch andthe National Coalition for DisabilityRights has publicly expressed opposition tothe Roberts nomination.

Disability issues will be put to the testearly in the case of Goodman v. Georgia, inwhich Tony Goodman, an inmate withparaplegia, is suing the Georgia StatePrison system under the ADA for their fail-ure to assist him with access to the bed andtoilet in his cell.

With threats continuing against theADA and the very right of Congress topass such a law, Roberts’ ascendancy toChief Justice and the yet-to-be deter-mined replacement for Justice O’Connorrepresent a call to the disability communi-ty to be all the more vigilant and aware,advocating as strongly as possible for ourrights to full inclusion and independentliving in our communities.

8 September/October 2005

Continued from page 1

Disability and The Supreme Court

By Robert Klein

T he challenge of finding my way arounda new city using a wheelchair as a C6/7quadriplegic is one of my greatest pleas-

ures in life.My most recent challenge was traveling

across the pond to check out the ChannelTunnel — or “Chunnel” — train that con-nects the capitol cities of Paris and London.Thirty-one miles of the trip runs under theEnglish Channel through a $15 billion tun-nel that burrows 150 feet beneath the seabed.The train’s state-of-the-art design allows 770passengers (two jumbo jets worth) to travelin outstanding comfort. The designers andoperators have also set the standard for railtravel for people with disabilities.

I did my research and booked my ticketsonline through www.raileurope.com. Havingfive years experience at disabled traveling, I’maccustomed to looking for the obvious signsof accessibility — such as do they even men-tion wheelchair access? They did, and thatassured me that there would be an effort toprovide accommodations.

When traveling, the service I’vereceived has usually been commensuratewith the cost — you get what you pay for!Think Morton’s vs. Outback Steakhouse(my apologies to vegetarians). But thanksto the discount the operator, Eurostar, offer

travelers with disabilities, the ride and serv-ice I received was way above and beyondexpectations. A price of a one-way pass inthe first class car to Paris was only $80, andmy two companions traveled at the samediscounted price. The normal price of afirst class ticket would be $340.

I arrived at London’s Waterloo Stationan hour prior to our scheduled departure,knowing that the trains in Europe leavethe station exactly when they are sched-uled. Any of my concerns about barriers,confusion, or lack of accommodationswere quickly dispelled. I rolled into thespacious modern terminal building, andweaved through the crowds to the moving

walkways which brought me up to thefirst class executive waiting lounge. Thestaging lounge is spacious and quiet,equipped with complimentary internetaccess, newspapers, periodicals, sodas,snacks, a full bar, and a comfortable sit-ting area for my able-bodied friends trav-eling with me. The truly first class settingallowed me to relax and enjoy my antici-pation of the upcoming trip.

The station is well-equipped with spa-cious elevators to get to the rails which are ona different level than street access. The train’screw used a portable ramp to lift me into thevery comfortable, wheelchair-accessible firstclass coach. Given the option of transferring

into a seat or staying in my wheelchair, Iopted to stay in the chair and experiencedvery little movement with my brakes on.

Once the train got under way the atten-tive French wait staff offered us a champagneaperitif as we took off through the south ofEngland. The train smoothly picked upspeed as we railed off through urban Englandapproaching our descent under the EnglishChannel through the Chunnel. Its maxi-mum speed is almost 190 miles per hour, butit felt like we were hardly moving. So in thespirit of challenging myself I decided to headto the head, where all the doors had automat-ic openers and were very spacious. Even at190 miles per hour, catheterizing is a breeze.

When I returned to my seat I was greetedwith a four-course gourmet meal includingpear and cheese appetizer with beautifulbreads, foix gras, a Dover sole and scallopsentrée, and rhubarb pie for dessert. This wasall complimented with a great selection ofFrench wines and was included in the price ofthe ticket. I probably could not have found ameal this great anywhere for 80 bucks!

The fast and constantly changing land-scape out the window of the southernEnglish rural areas, 20 minutes in the tunnel,and the French countryside’s small townsmade this two and a half hour trip seem tooshort. I could have indulged the richness ofthe scenery and that unique historic sense ofEurope much longer.

This may be the most accessible two anda half hours you spend in Europe. It was arefreshing change of pace to forget aboutlooking for curb cuts, making awkwardtransfers, and bumping over cobblestonestreets. This all became evident when we leftthe Gard de Norde Station in Paris and Ibegan my next welcomed challenge — get-ting around a thousand-plus-year-old citywhen I hardly speak any French.

Dana Reeve Fights Lung Cancer

Dana Reeve, 44, who took on the role ofchairwoman of the Christopher ReeveFoundation immediately after the death

of her husband, has announced that she hasbeen diagnosed with lung cancer. Very pri-vate about her personal life, Reeve revealedher illness only after learning that a tabloidnewspaper was about to break the news. Soafter the loss of her husband less than a yearago in October, 2004, and the subsequentpassing of her mother not long after, Ms.Reeve — and her thirteen year old son, Willfrom her marriage with Reeve — must faceyet another major life challenge.

She has made no public statementregarding the extent of the cancer, only thatit was recently diagnosed and she is receivingtreatment. In her announcement she said, “Ihave an excellent team of physicians and weare optimistic about my prognosis.” Havingnever been a smoker, Reeve is one of only 10percent of non-smoking women who devel-op lung cancer — one of the more difficultforms of the disease to treat — and only 3%of cases occur in people under the age of 45.

Reeve — who won a Mother of theYear award this past February from theAmerican Cancer Society — said shederives inspiration from Chris’ life "as theultimate example of defying the odds withstrength, courage, and hope."

“We join everyone who has beentouched by Dana’s boundless generosity inwishing her a successful recovery,” saidNSCIA Executive Director and CEOMarcie Roth.

Murderball Scores but Fails

Murderball, the documentary filmwhich follows the exploits of the U.S.Wheelchair Rugby team has received

rave reviews from critics. It has, however,not fared well in the theaters since itsrelease into general distribution, in relationto expectations.

The film — which portrays the ways inwhich people with SCI and quadriplegiaembrace life, using the intense sport ofwheelchair rugby to assert themselves inthe world — opened July 8 in New Yorkand Los Angeles, and then expanded tobetween 80 to 100 theaters nationwide.According to a report from the AssociatedPress on August 2, Murderball’s initial boxoffice receipts were considered low by abox office tracking representative, based onits “extremely high expectations.”

In an example of an enthusiastic reviewof the film, Peter Travers of Rolling Stonemagazine speaks to prevailing stereotypes,writing, “A smashing documentary aboutquadriplegics in wheelchairs — wait, it'snot depressing.” He concludes that themovie is “original, outrageous and murder-ous fun.” A number of reviewers have pre-dicted that the film will be nominated fora Best Documentary Academy Award™. Itremains to be seen whether the film’sstrong message of independence and itsview of disability without pity will attract abroader audience, as well as the success ofits core dramatic story of striving for suc-cess amidst personal rivalries.

I see London, I see FranceRiding the Chunnel Train

travel

The Chunnel Train.

9September/October 2005

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The vocation of theater brings to mindgrueling hours spent in rehearsal andlong runs of nightly performances. Yet

Jaehn Clare and Lyena Strelkoff have madereasonable accommodations that involve nei-ther and continue their acting careers. Actingis a tool each uses in her unique way to adjustto and thrive while living life with SCI.

Jaehn ("Jane") Clare lives in Atlanta,Georgia. In 1980, at the age of twenty, shefell from a ladder while working on a uni-versity theatre production. She sustained aT12 incomplete compression fracture.

“I was injured in a theater. I had to getback on the damn horse,” she insisted.“Less than five years into recovery, it crys-tallized that I was not going to allow myselfto fail from never trying.”

Clare needed role models which backthen did not exist. So she was delightedwhen she first saw a wheelchair rider in aMcDonald’s commercial and thought, “I’vegot to be part of that change.” She thenmade a commitment to the powerful andpositive creation of art.

She’s written and acted in two one-woman shows, and also conducts trainingsand speaks on panels. For Clare, acting andadvocacy interweave and are tools she uses

to lighten her “bag of rocks” when “it run-neth over.” That “bag” includes issues thatare part of living with SCI.

Jaehn’s first performance piece, Belle'son Wheels, is about Charity Belle, a highschool sophomore. It is a personal piece oftheatre which addresses many of the cultur-al myths and stereotypes that have separat-ed persons with disabilities from the main-stream of our society.

Tail Tell Tale, which she began per-forming in 2000, is a one-act perform-ance about a woman who turns into amermaid, written as a metaphor for herown recovery process. Her experience ofperforming the play, with its depth andbreadth of character and broad emotions,creating recovery throughout her presentlife. Clare uses the word “recovery” freely,as a continuing process of living. We areasked to recover constantly, from chal-lenges and disappointments that happento us every day. This is the central ideathat arises in her art, and how it helps herintegrate her SCI experience with her fullsense of being in the world.

Jaehn believes in the healing powers ofcreativity for herself and others. “Arts andthe possibility of recovery remind me of

the reasons it is a good day to be alive,”she asserts. “When people are thoughtfuland creative in how they express their artand those good things about living, thenit resonates. Working in the arts helps mecope, as does helping foster other peoplecoming to their own experience of arts.It’s the human reclamation process.”

Clare’s favorite quote is from the inspi-rational writer SARK: "Apply dog logic tolife: Eat well, be loved, get petted, sleep alot, dream of a leash-free world."

Lyena StrelkoffStrelkoff was injured at age 33. An

October 2002 fall in the Malibu,California hills crushed her spinal cord atthe T10-11 level. She went for rehabilita-tion at Craig Hospital in Denver.

To some, a new injury means entirelynew directions. Not Lyena.

“It never occurred to me that I wouldcease to do what I do. I had trained as anactor and dancer in private studios sincechildhood and graduated with a degree intheater from the University of Californiaat Irvine.” she explained.

When Strelkoff was at Craig, a coun-selor told her, “I really see you tellingyour stories. You have a way that opensthis world (of SCI) to people.”

After Lyena left the hospital, sheshared her story with friends. “Peoplewere hungry for what I was experienc-ing,” stated Strekloff. “It had meaning forthem even though they were not disabled.That was when I knew not only that Icould tell this story, but I had a responsi-bility to tell it.”

She was back on the stage in May of

2003, performing The Road to Recovery,which she wrote about her journey with SCI.

Strelkoff ’s most recent one-womanplay is Caterpillar Soup, presented at theRuskin Group Theatre in Los Angeles.“With humor, hope, candor and courageto reveal the transformational power ofloss and celebrating life in all its messi-ness, Caterpillar Soup is a story of destinyand a powerful love unshaken bytragedy,” describes Lyena. “Soup” createsthe power of healing and transformationfor both Strekloff and her audience.

The play opened in 2004 for three weeksand ran for six months. It received ravereviews including an Al Martinez column inthe L.A. Times on February 4, 2005:

“All around there are affirmations of lifeas Strelkoff tells her story, its title takenfrom the ‘soup’ in a caterpillar's cocoon outof which a butterfly emerges…

The Martinez review continued, “Inone scene, Strelkoff, determined to some-day walk again, says, ‘Hope is the belief inpossibility. …The past can't be undone.And I don't know if Strelkoff will everregain full use of her legs. But I do knowthat by her exquisite performance and bythe nature of a spirit that soars, she hasenlightened and ennobled us all.”

“I’ve been lucky. Doing the work I doin the world keeps me from being hope-less or depressed,” states Lyena. “DoingCaterpillar Soup changed my relationshipwith my injury. It gave me both a greaterperspective on and in a way a distancefrom SCI. Instead of each experiencebeing its own singular experience, you seea significance that only shows up whenthey are all linked together.”

10 September/October 2005

Adapting to SCI with TheaterThe Creative Force of Actors Strelkoff and Clare

arts Jaehn Clare earned a B.A. in Theatre Arts,with a Minor in Humanities, from theUniversity of Minnesota, and an M.A. inDramatic Literature from the University ofEssex, with more than twenty-five years expe-rience as an actor, director, producer andplaywright.

Jaehn is currently employed as Directorof Artistic Development with VSA arts ofGeorgia in Atlanta, coordinating Arts for AllGallery, a small non-commercial visual artexhibition space, as well as managing severalother programs.

For additional information, and toenquire about booking a performance, resi-dency, or workshop, contact her viawww.jaehnclare.net.

Lyena Strelkoff studied acting and dance at theUniversity of California at Irvine, and at JerzyGrotowski's WorkCenter in Italy. She thenbecame a member of Presences en Regard, a mul-tilingual theatre company in Paris.

Returning to the U.S., she was a foundingmember of Ziggurat Theatre Ensemble, playingsuch leading roles as the Goddess Guan Yin in itsacclaimed "Red Thread". She has created per-formance art works, published a book of poetry,created visual art which has been exhibited, andconducts workshops for adults and children,including Act One, a workshop in the skills ofmake-believe for kids.

The Road to Recovery was taped live at L.A.’sGascon Theater. Tapes are available via her web-site, www.lyenastrelkoff.org.

Lyena Strelkoff.

Jaehn Clare.

11September/October 2005

12 September/October 2005

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13September/October 2005

By Barbara McDermott

“Awesome!” “Diving is like being inspace. I can float in one spot, andswim wherever I want to go.”

These enthusiastic sentiments arefrom disabled SCUBA divers.

People with disabilities leave theirwheelchairs and other assistive devices onshore and experience freedom of move-ment under the surface of the water. Thewater has no curbs, stairs, or doors. AndSCUBA diving allows people with andwithout disabilities to share a recreationalactivity together. Underwater, everyonelooks the same.

Adaptive diving has become morepopular recently. At one time, some con-sidered SCUBA among the disabledexperimental; others thought it impossi-ble. The Professional Association ofDiving Instructors and the NationalAssociation of Underwater Instructors arethe best known SCUBA certificationagencies in this country. Their certifica-tions are activity-level based; and notalways possible for those with physicalimpairments to pass.

The Handicapped Scuba Association(HSA) was founded in 1981, and is rec-ognized in many countries. It certifiespeople to dive with special dive buddieswho help with tasks the divers cannotperform and categorizes the divers intolevels according to the number of divebuddies (one or two) required andaccording to their function (divers whoassist with normal function and thosewho have rescue skills). This systemmakes it possible for even those with highlevel spinal cord injuries to become profi-cient divers.

The training for diving consists ofclassroom learning and pool/open waterdiving. It is not necessary to be a goodswimmer, but you must be comfortable inthe water. The cost is approximately$200-$400, depending on location, andincludes the purchase of basic equipment.There are several adaptive SCUBA train-ing centers in the country. These centerstend to be well equipped; the instructorsare experienced and well-educated.However, experienced and well-educated

HSA instructors are located throughoutthe country who can provide a portion ofthe training themselves (search for themin your area at www.hsascuba.com).Certification dives can take place in anynumber of locations worldwide. Adaptivediving clubs exist in a number of areas,and organize diving trips to exotic loca-tions. Eels on Wheels (www.eels.org), theadaptive SCUBA club in Texas, has takentrips to Bonaire Island, Belize, CaymanBrac, and Honduras. They take care tofrequent places that accommodate thephysical needs of divers both on land andin the water.

Both HSA instructors and HSA divebuddies are educated in and sensitive tothe special requirements of divers withSCI/D. Emphasis is put on the effects ofSCI/D on all body systems. Weightingand buoyancy issues are much more diffi-cult in that population, because compen-sation for inadequate weighting by stom-ach and leg muscles may not be possible,

and proper weighting isrequired for proper underwa-ter orientation.

Divers with SCI/D wearthicker wet suits to helpmaintain adequate body tem-perature. These wet suits areavailable with zippers on bothsides, for easier donning/doff-ing. Special shoes and leg-gings are also available to pre-vent cuts and scrapes oninsensate skin. Divers wearwebbed gloves to make themost of arm movements.

Flippers for the feet are not usually worn.Disabled divers can enter the water

several ways. They can wheel right up tothe edge, and let the water help themfloat to where it’s deep enough to dive.Accessible boats are equipped with a liftto help them on and off. Dive buddieshelp support any part of the body thatrequires support.

Medical clearance is required for alldivers, who must also be free of secondarymedical complications such as decubitisulcers or urinary infections. Muscle contrac-

tures which limit range of motion in the hipsor knees are not usually a problem, thoughvery severe contractures which limit move-ment may make diving more difficult.Necessary medical clearances vary with loca-tion; some centers have physicians on stafffor this purpose. Otherwise, a visit to yourpersonal physician may be required.

Safety of all divers always comes first.Ascents are always slow. There are frequentstops to allow the circulatory system toaccommodate the depths reached whilediving. This is important for all divers, butespecially for those whose circulatory sys-tems may be impaired by injury.

All adaptive diving experts agree thatthere are positive physical and emotionaleffects to be gained from adaptive diving.The gravity-eliminated environment allowsmuch greater flexibility and movement forthe body, and diving promotes confidence,self-esteem, and cooperation between dis-abled and able-bodied divers. AdaptiveSCUBA allows people with SCI/D to expe-rience the beauty, weightlessness, and free-dom found under the surface of the water.In the words of Jean-Michel Cousteau,“they could fly like dolphins”.

Under The Seation for an advisory board to address. As aresearcher, Douglas is troubled by thecare/cure split among SCI survivors, andwants to see both factions get along better.

“They probably agree more than theyrealize,” says Douglas. “Everyone is lookingfor a better life. There’s nothing wrong withlooking in several directions for that, be it fora cure or for more physical access. It doesn’thave to be an either/or kind of thing.

“Providing answers about possiblecures is an important part of our responsi-bility to our members. The same goes forother exciting research areas such as skinbreakdown, spasticity, overuse issues, sex-uality, aging, and pain. Many people areunaware of developments that hold realpotential benefits.”

Another responsibility is talkingstraight about the realities of life onwheels. “Sometimes I think we underplayhow difficult this can be. We need tovocalize the difficulties and challengesmore, lobbying for more help, more pro-grams,” Douglas insists. “Unless peoplehave totally devastating injuries and playthe helpless victim, they don’t get theequipment, and care they need. Facing allthat, I can’t blame anyone who wants tojust blend into the woodwork. NSCIA canhelp people find direction and answers tothese overwhelming issues. Hopefullythey’ll find more peace in their life as awheelchair user.”

“Just because I’ve had some successdoesn’t mean I don’t get sad or forgetabout what I’ve lost. Being in a chair ishard and it’s OK for me to say that I don’tlike being paralyzed. Day-to-day life withSCI can grind us down and that’s notsomething we should soft-peddle. Wemust remember to let people in. We can’tget support if we don’t let people in.”

Susan looks to fight barriers wherevershe finds them. Not long after moving toL.A. she began a support group at themedical center. Now, after years of watch-ing wheelers struggle with such arcaneprovisions as the Medicare HomeboundRule and other regulatory barriers to inde-pendence, she wants to shake up insurancecompanies and the federal government. Soshe stopped practicing medicine andentered law school.

“I suppose I’m crazy for doing this,”she says, “but I want to learn insurancelaw so I can change some things.”

Law student, doctor, volunteer-extra-ordinaire; she still somehow makes timefor another important part of her life —music. She began piano lessons when shewas four and still plays every day. Nowshe’s taking up the violin.

“I love music; love, love, love it! It givesme some peace and tranquility in my life.”

Regardless of our occupation or appar-ent level of success Douglas believes allwheelers share the same daily strugglesand victories. She says we all benefit whenthose struggles and victories are validatedby people in the same boat, fighting thesame fight.

Susan DouglasContinued from page 5

sports SCUBA RESOURCESPADI (Professional Association of Diving Instructors)www.padi.com, Ph. 800.729.7234

NAUI (National Association of Underwater Instructors)www.naui.com, Ph. 800.553.6284

HSA (Handicapped Scuba AssociationInternational)www.hsascuba.com, Ph. 949.498.4540

IAHD (International Association for Handicapped Divers)www.iahd.org

Eels on Wheelswww.eels.org

Underwater Safariswww.hsascubaillinois.com, Ph. 773.348.3999

The Diveheart Foundationwww.diveheart.org, Ph. 630.964.1983

Jerry Garcia, lead guitarist for The Grateful Dead prior to his passage,assisted HSA's Jim Gatacre (r.) with triplegic diver, Michelle Galler.

callahan

14 September/October 2005

Anew injury, even in a major city withentrée to the best in medical care andrehab, is no cakewalk. But for Rory

Steigleder, who lives in rural Wemme,Oregon, finding competent medical pro-fessionals has been a nightmare from startto finish. Contact with NSCIA somewhatmitigated her horrific experiences.Working with the NSCIA ResourceCenter and an NSCIA board membergave her advice on choosing legal counseland peer counseling. Still, trying toresolve her issues related to living rurallywith a new SCI has been like movingthrough a vat of molasses.

“Nothing is accessible here,” lamentsRory. “Services are slow or non-existent,and it is an understatement to say thatrural and small town medical profession-als are not well versed in spinal cordinjury. Portland is the nearest town andeven there many doctors are unresponsiveor lack knowledge.”

Last December, Steigleder was inPortland’s Adventist Hospital where shehad contracted a Staphylococcus (staph)infection from a feeding tube in her

chest. Before theyreleased her, theyknew she had staph.Her vein infiltrated— which meant allthe medicine did notenter her bloodstream— but they claimedshe had received suffi-cient antibiotics. Theyreleased her with a

low-grade fever that percolated for threemonths, during which time the staphwas crushing her spine.

She returned four times to that hospi-tal. “The first time I went back with afever of 103 degrees and reported numb-ness in my back, buttocks, and legs,” shesays. Rory also noted that her balance wasoff. “I was walking like Frankenstein andthey said I had a bladder infection andsent me home.” On the remaining threevisits, hospital staff claimed she had apossible kidney infection, pleurisy, andpneumonia. No one at Adventist Hospitallistened to Steigleder’s claims of numb-ness and inability to walk well.

Finally she was paralyzed and referredby Mt. Hood Hospital to the OregonHealth Sciences Center (OHSU).

At OHSU she learned that the staphinfection had given her an incompleteSCI from T2 to T10. OHSU sent her tonearby Providence Hospital for twomonths of rehab. However Providencedoes not specialize in SCI, and one ofSteigleder’s numerous problems is thather wheelchair does not fit resulting in

increased spinal curvature from poorseating.

“She has gone from a thriving, inde-pendent person to someone dependent onat least one other person for every activi-ty,” noted Darlene Steigleder, Rory’smother who moved in to care for her.“The bottom line is I’m angry atAdventist Hospital because this happeneddue to their refusal to listen or believeRory’s accurate report of symptoms.”

Medical staff unskilled in listening topatients is not exclusively a small townproblem. Nor is it universal. Dr. Blome isRory’s attentive primary care physician,but neither he nor OHSU staff knewwhere to send her for competent evalua-tion and treatment. Her physicianassumed OHSU or Providence had a top-of-the-line SCI rehab department.Thanks to the NSCIA Resource Center,Dr. Blome now has significantly moreknowledge about treatment options forSCI/D. He recently called the ResourceCenter and learned where to downloadbowel program information atwww.spinalcord.org.

“Educating local physicians is animportant goal of ours,” states ResourceCenter Director Charleene Frazier. “Inrural settings, primary care physiciansneed a reliable source to consult with andask for guidance about their patients withSCI. There is a need for creative, costeffective provision of services, by tele-phone or telemedicine, for example.”

The Resource Center also providedSteigleder with questions to ask her doc-

tors and physical therapists to help iden-tify her proper wheelchair seating.“Charleene Frazier spent over an hour onthe phone with me,” noted Rory,“answering each of my questions. I wasclueless before I talked with her.”

“The problem is everything takes for-ever,” says Rory. “I think when you getSCI from a car accident, the system isbetter designed to spring into action andget what you need. When contaminatedhospital equipment gives you a staphinfection that destroys your spinal cord,all the health systems break down.”

Steigleder continues to advocate forthose components necessary to rebuild-ing an independent life. Competentmedical evaluation, home modification,assistance for independent living, andvocational rehabilitation have yet tobegin, even though the state of Oregonhas funding in place for those services.

Her personal care assistant quit justas her parents were leaving town. As Iinterviewed her she was fearful of facingfour days alone in a poorly equippedhouse. “It’s depressing sometimes,” shestated. “If I fall, that’s it. There’s no oneto help.”

Yet Rory has a resilient core, and iswell-equipped for seeking support andkeeping on with her life. We finished ourdiscussion speaking about the difficultyshe was having getting answers from someof her doctors. “You know, I could callthe NSCIA Resource Center back,” shesaid. “I bet they would know how to han-dle that.”

The Challenges of Rural LifeDemanding Care in the Outskirts

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

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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)

FREE!FREE!FREE!$100.00$100.00$250.00$500.00$1000.00

resource center profile

SSppiinnaall CCoorrdd IInnjjuurryy VVoolluunntteeeerrss aarree NNeeeeddeedd

The Translational Pain Research Group at the Brigham and Women‘s Hospital

is conducting clinical trials that evaluate various medications

to help relieve chronic neuropathic pain as a result of a Spinal Cord Injury.

You MAY BE eligible if you are:

18�70 years old

Have been diagnosed with a Spinal Cord Injury

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FOR MORE INFORMATION CALL FOR MORE INFORMATION CALL 1�617�525�PAIN (7246)1�617�525�PAIN (7246)

OR EMAIL US AT PAINTRIALS@PARTNERS.ORGOR EMAIL US AT PAINTRIALS@PARTNERS.ORG

By Len Zandrow,NSCIA General Counsel

In recent years, the U. S. Supreme Courthas narrowed the scope of theAmericans with Disabilities Act (ADA).

This past June, however, advocates for peo-ple with disabilities reversed the tide witha key victory in the case of Spector versusNorwegian Cruise Lines.

The defendant, Norwegian Cruise Lines(NCL), operates cruise ships that departfrom and return to ports in the UnitedStates. Its ships are essentially floatingresorts which provide passengers with cab-ins, food, and entertainment. AlthoughNCL is based in Miami, Florida and servespredominantly U.S. residents, almost all ofits ships are registered in other countries,flying so-called flags of convenience. Thetwo ships involved in the Spector case, theNorwegian Sea and the Norwegian Star,were both registered in the Bahamas.

The plaintiffs in Spector were peoplewith disabilities and their companions.They had purchased tickets on the

Norwegian Sea and the Norwegian Star forcruises originating from Houston, Texas in1998 or 1999. They believed that they hadbeen “taken for a ride” in a variety of dis-criminatory ways. Passengers with disabili-ties, unlike others, were required to waivepotential medical liability and to travelwith companions. They had been chargedhigher fares and a special surcharge.Evacuation programs and equipment hadbeen maintained in inaccessible locations.NCL reserved the right to remove any peo-ple with disabilities whose presence endan-gered the “comfort” of other passengers. Inaddition, there were many physical accessproblems on board the ships. Most of thecabins were inaccessible, and the ships’coamings, the raised edges around thedoorways, blocked access for passengers inwheelchairs or scooters.

The plaintiffs brought suit under TitleIII of the ADA, which prohibits discrimina-tion in places of “public accommodation”and in “specified public transportation serv-ices.” 42 U.S.C. sec. 12181(a), sec.12184(a). The lower court dismissed someof the claims on jurisdictional grounds.Eventually, the 5th Circuit Court ofAppeals torpedoed all of the plaintiffs’claims, ruling that the ADA did not applyto foreign-flag vessels — even if they navi-gated through U.S. territorial waters.

The Supreme Court charted a middlecourse in the dispute. A 5-4 majority of thejustices concluded that foreign-flaggedcruise ships were in fact places of “publicaccommodation” and “specified publictransportation” within the meaning ofTitle III. Accordingly, NCL could not per-

missibly discriminate against their passen-gers with disabilities. However, theSupreme Court also found a potentialescape hatch in the ADA from some of theplaintiffs’ claims. The Court noted that thestatute requires discriminatory barriers tobe removed only where “readily achiev-able.” 42 U.S.C. sec. 12181(9)(B) and12182(b)(2)(A)(iv). The Court interpretedthis exception to permit considerationsother than the mere cost of the modifica-tions involved. The Court also ruled thatthe “readily achievable” exception does notrequire physical access changes that wouldbring a foreign-flagged vessel into conflictwith international laws or that would com-promise other passengers’ health or safety.The Court remanded the case to the trialcourt so that more evidence could be gath-ered and a fuller record developed.

What is the course for the ADA in thewake of Spector? In light of the SupremeCourt’s pattern of curtailment in recentyears, any expansion in the ADA’s scope andrights is welcome and positive. Specifically,the Court’s decision should mean thatcruise ships flying foreign flags will have tobe more accommodating to the 7 millionU.S. passengers whom they serve annually,large numbers of whom have disabilities.

The margin of victory in Spector couldnot have been slimmer, however, with therecently retiring Justice Sandra DayO’Connor casting a dissenting vote. How theADA continues to fare at the Supreme Courtin the near future will likely proceed on anincremental, case-by-case basis, and may wellturn on the perspective and persuasiveness ofJustice O’Connor’s successor.

15September/October 2005

Victory at SeaForeign Cruise Ships andthe U.S. Supreme Court

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16 September/October 2005

17September/October 2005

REAL PEOPLEREAL CHALLENGESREAL SOLUTIONS

Abilities Expo showcases the latestproducts and services to enhance the livesof people with disabilities. Visit the freeexhibit hall packed with vendors featuringequipment demonstrations, attend freeprofessional and consumer workshops,participate in special events, and visit withlocal organizations, all under the same roof!

NAME: ________________________________________________________________________

ADDRESS:______________________________________________________________________

CITY: __________________________________________________________________________

STATE: ________________________________ ZIP: ____________________________________

EMAIL: ________________________________________________________________________

All events are wheelchair accessible.

© 2005 Advanstar Communications Inc. All rights reserved.

Advanstar Communications provides certain customer contact data (such as customer's names, addresses,

phone numbers and e-mail addresses) to third parties who wish to promote relevant products, services and other

opportunities which may be of interest to you. If you do not want Advanstar Communications to make your

contact information available to third parties for marketing purposes, simply call 800-331-

5706 between the hours of 6 am and 7 pm (CST) and follow the instructions to remove your

name from Advanstar's lists.

Bring coupon to any 2005 Abilities Expo and save the $5 on-site entrance

fee. Coupon must be filled out to be valid and may be photocopied for

additional registrants. For information call: (800) 385-3085.

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

Abilities Expo is sponsoredby the National Spinal CordInjury Association. Stop byand visit the booth at anyof the Abilities Expos.

ADMIT ONE

NY Metro April 15-17, 2005Edison, NJ

Southern CaliforniaJune 3-5, 2005Anaheim, CA

Metro DetroitAugust 26-28, 2005Novi, MI

Chicago MetroSeptember 16-18, 2005Rosemont, IL

TexasSept. 30-Oct. 2, 2005Houston TX

Northern California November 18-20, 2005Santa Clara, CA

Produced andManaged by:

SCI

By Ari Seirlis

In a country so diverse, rich and poor,with many cultures, many languages, andmuch opportunity — but still many frus-

trations and problems — South Africa isstill a life-threatening place to have a spinalcord injury.

Approximately 700 persons a yearbecome paraplegic or quadriplegic here.40% are caused by road accidents, 30% bycrime (gunshot and stabbing), 10% frommining accidents, 10% occur due to fallsand work-related events, and 10% fromextreme sport and other unusual accidents.

For those able to afford medical insur-ance/aid, the path through rehabilitationwill be an easier one — though probablyhounded by the case manager of their med-ical aid company, wondering why it is cost-ing so much. For someone not on medicalinsurance, I'm afraid the worst is in store.

State facilities for rehabilitation arepoorly equipped, understaffed, and under-resourced, leaving those that survive at ahuge disadvantage as the state cannotafford state-of-the-art equipment. If they’relucky, they’re issued a basic wheelchair andpossibly a cushion, and that’s it! It takesgreat resilience and a lot of support andintervention to make it. Chances of sur-vival as a high level quad are slim.

Possibly the biggest injustice to a personwith SCI in SA is that there is no accessiblepublic transport system. You are handi-capped not by your wheelchair but by theinfrastructure. Very few buildings are accessi-ble and society as a whole has not catered tothe mobility impaired, providing no access toskills, jobs, or the opportunity to integrate.

If you have financial resources, thesewill be depleted quickly unless you secureemployment. Life in a rural area with aspinal cord injury is the toughest scenario— inaccessible, with no access to water,sanitation, or health care.

Many persons with SCI return to hos-pitals and clinics with pressure sores andurinary tract infections. The state-run insti-tutions, again, cannot cater to these prob-lems. They return their patients homewithout sufficient treatment.

Cultural beliefs and influences also affectthe re-integration of persons with SCI intocertain communities. The disability rightsmovements have been very successful in cre-ating legislation that protect the rights of race,gender, and disability. But while the govern-ment has the intention to make good, andlegislation has the rights of the disability sec-tor at heart, very few initiatives have reapedresults. The much publicized EmploymentEquity Act, which forces business to considerthe potential of persons with disabilities forthe workplace in a quota system, has not hadthe desired effect. The forces influencing thisresult are twofold; the disability sector was notready for this legislation, nor were theemployers — including the Government —which is one of the largest employers.

The new and democratic governmenthas been proactive. Persons with disabilitiescan be found in various departments andeven in Parliament. This includes personswith SCI, but often their aims and goals arecompromised by the political influencesand resources available.

Our constitution is surely one that wecan be proud of, and the Equality Act,recently promulgated, ensures that everyonein our country has equal rights, and cannotbe discriminated against for colour, gender,or disability. Once these pieces of legislationhave their effect, the path for survival andintegration and success for the people withdisabilities will be less cobbled than it is now.

Much of our disability legislation isdesigned from influences of the ADA. Wehave the framework that should eventuallyoffer equal rights and equal opportunitiesfor persons with disabilities.

The QuadPara Association of SouthAfrica (QASA) is proud to have been partof much of the lobbying that has been nec-essary for this legislation to be put in place.

Interestingly enough, another handi-capping policy that compromises theaffordability of all mobility aids, assistivedevices, and chronic medications used byall persons with SCI is a government levy inthe form of a Value Added Tax. The VATadds 14% to the cost of all products,including wheelchairs or assistive devices.The government has been lobbied toexempt these items, so far to no avail.

QASA has many products, services, andprojects in place to try and create solutions toimprove the lives of quadriplegics and para-plegics in SA. We have a project for teachingpersons to drive, we collate a database, wedeliver skills programmes, publish a maga-zine called Rolling Inspiration, and havedeveloped self-help centres for independentliving which is affordable and sustainable.

All these cost a fortune while helpingonly a few people at a time. Those few thatare on our programmes re-integrate andbecome functional members of our societyagain. There has been much done, butmuch remains to do.

South Africa is a beautiful country,with beautiful people and some incrediblerole models. Soon, persons with spinalcord injuries and the disability sector ingeneral will play a more meaningful role inthe political leadership of this country andin business.

Ari Seirlis, a low quadriplegic from a divinginjury, is the Director of The QuadParaAssociation of South Africa and ManagingEditor of their quarterly magazine, RollingInspiration.

SCI in South Africainternational view

18 September/October 2005

CALIFORNIALeon S. Peter’s Rehabilitation CenterCommunity Medical Center FresnoTelephone: 559.459.6000 ext. 5783E-mail: rgreenberg@cmc.org Contact:Ray Greenberg

CALIFORNIASt. Joseph’s General HospitalTelephone: 707.445.8404E-mail: richbsherry@yahoo.comContact: Richard Sherry

FLORIDAFlorida Rehabilitation and Sports MedicineTelephone: 407.823.2967Contact: Robin KohnTelephone: 407.623.1070Contact: Carl Miller

FLORIDAHEALTHSOUTHSea Pines Rehabilitation HospitalTelephone: 321.984.4600Email: Ellen.Lyons-Olski@health-south.com Contact: Ellen Lyons-Olski

FLORIDAHEALTHSOUTHCapital Rehabilitation HospitalTelephone: 850.656.4800Contact: JoAnna Rodgers-Green

FLORIDATampa Bay Area Support GroupHealthsouthTelephone: 800.995.8544 Telephone: 813.844.4286Fax: 813.844.4322Website: www.flspinalcord.usE-mail: info@flspinalcord.us Telephone: 727.821.9131Contact: Barry Marshall

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

GEORGIAHEALTHSOUTH Central GA Rehab HospitalTelephone: 800.491.3550, ext. 643 Telephone: 478.471.3500, ext. 643 Fax: 478.477.6223Contact: Kathy Combs

MARYLANDKernan Hospital SCI Support GroupTelephone: 410.448.6307 Website: clubs.yahoo.com/clubs/ker-nanscisupportgroupE-mail: lmwilson123@yahoo.com Contact: Lisa Wilson

MISSISSIPPIMagnolia Coast SCI Support GroupTelephone: 800.721.7255 Website: www.lifeofms.com Email: LIFEofCentralMS@aol.comContact: Michelle Bahret

MISSOURISouthwest Center for IndependentLivingTelephone: 417.886.1188 Telephone: 417.269.6829Website: www.paraquad.orgE-mail: mtrimble@swcil.orgContact: Marion Trimble

OHIOHillside Rehabilitation HospitalTelephone: 330.856.5861 (H)Telephone: 330.856.4303 (W)Contact: Mike Logan Telephone: 330.841.3700Contact: Sue Joy

PENNSYLVANIAHEALTHSOUTHRehabilitation Hospital of AltoonaTelephone: 800.873.4220

PENNSYLVANIAHEALTHSOUTHGreater Pittsburgh RehabilitationHospitalTelephone: 800.695.4774 Telephone: 412.856.2584 E-mail:kristy.nauman@healthsouth.comContact: Kristy Nauman, P.T.

PENNSYLVANIADelaware Valley Spinal Cord InjuryAssociationTelephone: 215.477.4946Contact: Bruce McElrath

PENNSYLVANIAMagee Rehabilitation SCI Resource & Support GroupTelephone: 215.587.3174 Fax: 215.568.3736Website: www.mageepeers.orgContact: Marie Protesto

PENNSYLVANIAHEALTHSOUTH Rehabilitation Hospital of YorkTelephone: 800.752.9675 ext. 820Telephone: 717.767.6941Contact: Lisa Schneider

TEXASDallas/Ft. Worth SCI Support GroupTelephone: 972.617.7911

WEST VIRGINIAWest Virginia Mountaineer Support GroupTelephone: 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 for assis-tance on our business line 301.214.4006or our Helpline: 800.962.9629.

NSCIA CHAPTER NETWORK

NSCIA SUPPORT GROUP NETWORK

ARIZONAArizona United Spinal Cord InjuryAssociationTelephone: 602. 239.5929Telephone:877.778.6588Fax: 602.239.6268Website: www.azspinal.orgEmail: info@azspinal.org Contact: Paul Mortensen

CALIFORNIAWYNGS, NSCIATelephone: 818.267.3031 Fax: 818.267.3095Website: www.wyngs.orgEmail: wyngs4sci@msn.com Contact: Michele Altamirano

CONNECTICUTConnecticut Chapter, NSCIATelephone: 203.284.1045Website: www.sciact.org Email: nscia@sciact.org Contact: Bill Mancini

DISTRICT OF COLUMBIASCI Network of MetropolitanWashington, NSCIATelephone: 301.424.8335Fax: 301.424.8858Website: www.spinalcordinjury.netEmail: stevetowle@cs.comContact: Steven Towle, Don Woodruff

FLORIDAFSCIA, Spinal Cord Support Groupof Collier County, Inc.Telephone: 239.825.9999Email: spinal@naples.netContact: Mindy Adaspe

ILLINOISSpinal Cord Injury Association ofIllinois Telephone: 708.352.6223Fax: 708.352.9065Website: www.sci-illinois.orgEmail: SCIInjury@aol.comContact: Mercedes Rauen

INDIANACalumet Region Chapter, NSCIATelephone: 219.944.8037Email: rjackson@ci.gary.in.usContact: Lucille Hightower

KENTUCKYDerby City Area Chapter, NSCIATelephone: 502.589.6620E-mail: dallgood@calky.orgContact: David Allgood

MASSACHUSETTSGreater Boston Chapter, NSCIAHEALTHSOUTH, Telephone: 781.933.8666 Fax: 781.933.0043Website: www.sciboston.com E-mail: sciboston@aol.comContact: Kevin Gibson

NEW HAMPSHIRENew Hampshire Chapter, NSCIATelephone: 603.479.0560 Fax: 928.438.9607Website: www.nhspinal.orgE-mail: lthompson@nhspinal.orgContact: Lisa Thompson

NEW YORKNew York City Chapter, NSCIA Telephone: 212.659.9369 Fax: 212.348.5902Email: NYCspinal@NYCspinal.orgWebsite: NYCspinal.orgContact: James Cesario Telephone: 914.969-7257 (H)Telephone: 914.325-3059 (C)Contact: John Moynihan

NEW YORKGreater Rochester Area Chapter,NSCIATelephone: 585.275.6097Contact: Karen GenettEmail: rochesternscia@yahoo.com Telephone: 585.275.6347Contact: Kathy FlannaganEmail: ascaramu@frontiernet.netContact: Amy Scaramuzzino

NORTH CAROLINANCSCIATelephone: 919.350.4172E-mail: dmyers8@triad.rr.comContact: Deborah Myers E-mail: kvasquez@wakemed.orgContact: Karen Vasquez

OHIONorthwest Ohio Chapter, NSCIATelephone: 419.872.5347Website: www.spinalrap.org E-mail: nwonscia@hotmail.com Contact: Debra Ostrander

SOUTH CAROLINANSCIA South Carolina ChapterTelephone: 866.445.5509 Toll free: 803.252.2198Fax: 803.376.4156Website: www.scscia.org

TEXASRio Grand Chapter, NSCIATelephone: 915.532.3004E-mail: riograndenscia@aol.com Contact: Sukie Armendariz, RonPrieto

VIRGINIAOld Dominion Chapter, NSCIATelephone: 804.726.4990E-mail: whlbound@comcast.net Contact: Shawn Floyd

WISCONSINNSCIA Greater Milwaukee AreaChapter Telephone: 414.384.4022 Fax: 414.384.7820Website: www.nsciagmac.orgE-mail: nsciagmacwi@aol.com Contact: John Dziewa

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

Assisted Suicide Bill Fails inCalifornia State Assembly

In February California Democrat Assemblymembers Patty Berg and Lloyd Levine intro-duced Bill 654, which would allow a patient

determined by a physician to have “a terminaldisease, and who has voluntarily expressed his orher wish to die, may make a written request formedication for the purpose of ending his or herlife.” However it failed to pass in the most recentlegislative session; 41 votes in support of the billwere needed by July 3, but Berg and Levine wereunable to gather enough support and declaredthe bill “inactive.” Which means that it willreappear in a future session, continuing thedebate on euthanasia or “mercy killing.”

In 1992, California proposition 161 —which would have allowed physicians to hastendeath by actively administering or prescribingmedications for self administration by suffer-ing, terminally ill patients — was defeated bythe state’s voters by 54 to 46 percent. In 1994,Oregon voters passed Measure 16, the DeathWith Dignity Act by a close margin of 51 to 49percent. Other states are also contemplatingsuch laws as the one in Oregon, where, from1998 to 2004, 208 people took their own liveswith doctor prescribed substances. One hun-dred seventy two of them reported that amongtheir reasons for choosing suicide was a fear ofdecreasing ability to do enjoyable activities.Opponents of assisted suicide claim that abusesare occurring in Oregon. At the time of thiswriting, the Oregon Death with Dignity Act isscheduled to come before the US SupremeCourt during its fall session.

The disability community is divided onthe question, some feeling that it is up to theindividual to choose how and when to die,even if it is because they are hopeless abouttheir quality of life. Others believe that thewidespread misunderstanding of disabilityleads the public — and some in the medicalcommunity — to feel that a life with a dis-ability is not worth living and so some whocould live well might instead be led to endtheir life. NSCIA has taken a leadership posi-tion, in the disability community and else-where, in opposing assisted suicide. It is oneof the few disability organizations in thecountry to have prepared and filed its ownamicus or friend-of-the-court brief in 1997 inthe U.S. Supreme Court’s landmark case of“Washington v. Glucksberg.”

THE NSCIA RESOURCE CENTERTHE NSCIA RESOURCE CENTER

We can help you with:Seeking local resources

NSCIA chapter and support group locationsNon-NSCIA sources of support

Locating rehabilitation facilitiesFunding information and insurance guidelines

Relevant web sites

Families with new injuries are given top priority.

Toll free 800.962.9629Weekdays 8:30 a.m. to 5:00 p.m. Eastern Time

info@spinalcord.orgHablamos español

19September/October 2005

Freedom to choose where, when and how to explore life is the aspiration

of virtually every American. For many persons with physical disabilities

and special transportation needs, having choices to fit their individual

needs provides a rewarding experience. Ford Mobility Motoring offers

valuable financial and practical assistance, including reimbursement for the

exact amount of vehicle adaptations, up to $1,000 on adaptive equipment

and up to $200 on alerting devices, lumbar support and running boards.*

Ford Credit Mobility Financing — Offering flexible finance terms for

persons with physical disabilities and their families. In addition, they will

finance both the vehicle and the adaptive equipment for qualified customers

enrolled in the Ford Mobility Motoring Program.

Roadside Assistance — Tire changes, towing, fuel delivery, lockout

assistance and jump-starts are now just a phone call away. In times of

need, a 24-hour toll-free number can bring assistance any day of the year.

www.mobilitymotoringprogram.com

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

1952 - 2004

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

MA8629/12-04/1

1-800-952-22481-800-833-0312 TTY

20 September/October 2005