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DESCRIPTIONDef Leppard's Rick Allen Issue June/July 09
$4.99Volume 2009DEFLEPPARDSALLEN JUNE/JULY
MANAGING EDITORGillian Friedman, MD
EDITORSDiane ChappellDahvi FischerRenne GardnerSonnie GutierrezPamela K. JohnsonJosh PateDavid RadcliffDenise Riccobon, RNJane Wollman RusoffMaya Sabatello, PhD, JD Romney Snyder
MANAGING HEALTH EDITORE. Thomas Chappell, MD
HEALTH EDITORSLarry Goldstein, MDNatalia Ryndin, MD
CONTRIBUTING SENATORU.S. Sen. Tom Harkin (D-IA)
CONTRIBUTING WRITERSLinda Boone HuntGale Kamen, PhDLaurance Johnston, PhDAndrea KardonskyDeborah Max Myles Mellor - Crossword PuzzlePaula Pearlman, JD John PaizisRichard PimentelAllen RuckerKristen McCarthy ThomasBetsy Valnes
HUMOR WRITERSJeff CharleboisGeorge Covington, JDGene Feldman, JD
WEB EDITORJoy Cortes
GRAPHIC ART/ILLUSTRATIONScott JohnsonKeriann Martin Melissa Murphy - Medical Illustration
PHOTOGRAPHYNancy Villere -CrushPhotoStudios.com
The views expressed in this issue maynot be those of ABILITY MagazineLibrary of Congress Washington D.C. ISSN 1062-5321
Copyright 2009 ABILITY Magazine
DIRECTOR OF BUSINESS AFFAIRSJohn Noble, JD
MARKETING/PROMOTIONSJo-Anne BirdwellJacqueline MigellAndrew Spielberg
NEWSSTAND CIRCULATIONJohn Cappello
NON-PROFITSABILITY Awareness/Fuller CenterHabitat for Humanity
6 SENATOR HARKIN The Community Choice Act
8 HUMOR Blame Bin Laden
10 ASHLEYS COLUMN International Language of Pizza
12 ADVENTURE SKILLS More Than a Workshop
14 LISE COX The Blind Leading the Blind
16 HSIEN HAYWARD Volunteering, Travel and Bulls
18 KATRINA Stormy Stories
28 GEORGE COVINGTON A Brush With Andy
30 DRIVEN Beyond an Accessible RV
34 DEF LEPPARDS Rick Allen Tapping Drum Therapy
43 PERFECT CIRCLES One-of-Kind John Michael Stuart
46 OBAMA SIGNS Kennedys Act Expanding Community Service
50 TERRI CHENEY Bipolar or Mood Rainbow Disorder
58 HAWAII Wheels To Water
62 CROSSWORD PUZZLE Guess Your Best!
64 EVENTS & CONFERENCES
74 SUBSCRIBE TO ABILITY MAGAZINE
ABILITY Magazine is published bimonthly by C.R. Cooper, 8941 Atlanta Ave. HB, CA 92646(ISSN 1062-5321) All Rights Reserved.
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Rick Allen and Lauren p. 34
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Edward M. Kennedy Serve America Act
Terri Cheney p. 50
International Volunteer p. 16
Volunteering Blind p. 14
Ashley Fiolek p. 10
ABILITY 5ABILITY 5
The ABILITY Build programoutreaches to volunteerswith disabilities to helpbuild accessible homes forlow income families. We arecurrently seeking corpora-tions, organizations andchurches to sponsor morehomes. This award-winningprogram builds homes andawareness, changing thelives of everyone involved.
[email protected] abilityawareness.org
program, the allowable expenses under the program areoften capped on a monthly or yearly basis. Sometimesthese capped amounts may not be sufficient for an individ-ual with a disability, due to the nature of the services andsupports that are necessary to live in the community. Orthe services may be capped in other ways, such as limitedenrollment, limited services, limited disabilities, limitedages, or de facto exclusion of particular conditions.
The vast majority of people prefer to remain in their com-munity and receive the assistance they need with dailyliving at home. This is true for people with physical dis-abilities, intellectual and developmental disabilities. Theability to choose to receive community based servicesand supports is critical to allowing people to lead inde-pendent lives, play an active role in day-to-day familylife, have jobs and participate in their communities.
My bill, the Community Choice Act, simply requires thatall Medicaid eligible individuals with disabilities have achoice between receiving care at home or in an institution.
The Community Choice Act requires that Medicaidrecipients with conditions serious enough to qualify foran institutional level of care must be given access topersonal care services in the community, even in statesthat do not currently offer these services or offer them toa limited population. Personal care services under theCommunity Choice Act include help with accomplish-ing the activities of daily living such as dressing,bathing, grooming and eating; and help with instrumen-tal activities including shopping, chores, meal prepara-tion, finances and health related functions. At the sametime, the combination of financial eligibility limitationsand requirements on the severity of the condition underMedicaid impose realistic limitations on these govern-ment funded services.
Studies show the cost of providing services at home orin the community is much lower than in an institutional-ized setting; that, because providing home and commu-nity based care services is less expensive than nursinghome care, it allows more people to be served; and thatuse of home and community based services can slowgrowth in Medicaid spending.
Addressing our vast unmet long term care needs in thenear future is critical. It needs to be a part of health carereform. The Community Choice Act has the potential notonly to genuinely reduce the numbers of people with dis-abilities living in institutionalized settings, but also toreduce or delay nursing home admissions and to allowmore individuals to receive needed personal care services,while providing Americans with disabilities choice aboutwhere to receive the services and supports they need.
Senator Tom Harkin
The Community Choice Act: Change We NeedIn 1990, Congress overwhelmingly passed the Ameri-cans with Disabilities Act (ADA). The ADA sets outfour goals to truly bring people with disabilities into themainstream of society: equal opportunity, full participa-tion in the community, independent living and economicself-sufficiency. Nine years later, the United StatesSupreme Court, in the Olmstead v. L.C. decision, madeclear that the ADA gives individuals with disabilitiesthe right to make the choice to receive their care in thecommunity rather than in an institutional setting (a nurs-ing home or intermediate care facility for the intellectu-ally disabled). This year marks the 10-year anniversaryof the Olmstead decision.
Unfortunately, 10 years later, federal law still onlyrequires that states cover nursing home care in theirMedicaid programs. There is no similar requirement thatstates provide eligible Medicaid recipients home andcommunity based care services. As a result, individualswith significant disabilities often face the untenablechoice of either receiving their necessary care in a nurs-ing home or other institution, or receiving no services atall. This is unacceptable.
The statistics are even more disproportionate for adultswith physical disabilities. In 2007, 69 percent of Medic-aid long-term care spending for adults with physical dis-abilities paid for institutional services. Only 6 statesspent 50 percent or more of their Medicaid long-termcare dollars on home and community-based services forolder people and adults with physical disabilities whilehalf of the states spent less than 25 percent. This imbal-ance continues even though, on average, it is estimatedthat Medicaid dollars can support nearly three adultswith physical disabilities in home and community-basedservices for every person in a nursing home.
Although every state has chosen to provide certain ser-vices under home and community-based waivers, theseservices are unevenly available within and across states,and reach a small percentage of eligible individuals. Indi-viduals with the most significant disabilities are usuallyafforded the least amount of choice, despite advances inmedical and assistive technologies and related areas. Inmany states there are significant waiting lists for thesewaivers, and this often results in the worsening of currentdisabling conditions or the exacerbation of secondary con-ditions. Even after one is deemed eligible for a waiver
There is a dying art in the world today. It is calledtaking responsibility for ones own actions. It usu-ally means that you were wrong doing something.But, come on, who wants to ever admit they were wrong?
I must admit, irresponsibility is a big peeve of mine. Thereason why is because, simply put, Im a responsibleguy. I make my bed. I do the dishes. I pay my taxes and,you know what? I dont want to, but unfortunately, thatspart of being a grown up. Im tired of cleaning up every-one elses sloppy life choices. I wouldnt mind going outevery night and getting hammered and sleeping all day. Iwould like to buy things I cant afford then file bankrupt-cy and let the tax payers take on my responsibility to payfor it. Is it my job to pay for your healthcare becausesome drug like heroine was calling your name? I havekids, and believe me its not always a day at the beach.But as much as I hate to admit (at times), Im responsiblefor them. Responsibility means playing by the rules andaccepting the consequences for your actions.
In the olden days, your name meant a lot, and peoplewould do everything they could not to tarnish it. If theyborrowed money, often over a handshake, they would dowhat they needed to alleviate the debt. Rather than belabeled a deadbeat they would sell the cow, buggy wagonor the plowing horse. Crazy, isnt it? Paying back adebtan often overlooked trait but responsibility helpedbuild this country. Back then, kids learned responsibilityearly in life. They had to do crazy things like chores, notso they could get money to buy something cool to playwith, but because it was expected of the household. Theygave whoopings back then. It was amazing how quickly achild learned responsibility. Today you cant spank yourkid, or youll be held responsible for trying to teach himhow to be responsible.
Its not just individuals who bear the burden of recklessbehavior but also society. When you live in an irrespon-sible world, anything goes. I know its hard to believebut when you toss a lit cigarette out the window it canstart a brush fire. Do us a favor and just swallow it. Asfor you litterbugs, I know you think the world looksprettier with your fast food wrappers decorating thelandscape, but youre no Renoir. Keep your art in thegarbage can where it belongs, otherwise it gets sweptinto our water systems. I dont like when a Burger King
wrapper touches my leg when Im swimming in theocean, I think its a jellyfish. I know its cumbersomebut walk those ten meters to a trash can. Who knows?You might even find something good to nibble on.
Im not seeing much responsibility in this generation.Society has provided outs for our detrimental actions.If you drink too much, youre considered to have anuncontrollable disease. If you cheat on your spouse, youcouldnt help it because youre a sex addict. Every otherradio commercial is a company offering to get sixty per-cent knocked off your credit card bill because you putyourself in debt. After all, why should you be responsi-ble for paying for your big screen television? Thats out-rageous! Its not your fault that the store let you slap iton your Visa.
We feel sorry for actors or sports figures that fall to thetemptations of stardom, whether it is drugs, booze, strip-pers or some incident with a hand gun. That poor super-model that blows up and throws her cell phone at somepoor assistants squirrely head because he forgot to fillthe bowl in the hotel room with just green M&Ms.Yeah, it wasnt her fault she was just having a badBotox day. If anyone should act responsibly, its thesecelebrities. They have been blessed with talents thatmake them a lot of money. But every day we hear aboutsome wacky behavior that brings them more publicitythan their last movie. Then we feel sorry for them, offerour forgiveness, cheer their climb back to the top, thenwatch them take a tumble again. If only the worldshowed us the compassion and forgiveness we give ourstars for their irresponsibility.
Why should we be responsible for our own actions?Personally, I dont like responsibility. It holds meaccountable for all the things I do. But when I screwupand I do a lotI take the experience and do mybest to learn from it. Instead of excuses, I try and makeamends. Its part of growing up. (I know, who wants todo that?) Responsibility makes you a better person. Youstart thinking of others instead of yourself. It is a pathtowards ones best. Winston Churchill once said theprice of greatness is responsibility. And we should allstrive to be great in our own way.
I have learned in life that the more responsible I am,the fewer headaches I have down the line. Anothergreat leader, Abraham Lincoln, stated, You cannotescape the responsibility of tomorrow by evading ittoday. That cat was right. With quotes like that, heshouldve been president.
So the next time you feel like mumbling that old stan-dard catch phrase of It wasnt my fault. Think aboutit. The world needs better people and you start becom-ing better by accepting responsibility for what you do.We cant always blame Bin Laden. If you think this arti-cle is a piece of junk, well, as much as I hate to admit toit, Im responsible for it.
by Jeff CharleboisHam on a Roll
Hello everyone, I just wanted to introduce myselfbefore I start on my first column for ABILITYMagazine. My name is Ashley Fiolek, I am 18years old, I was born deaf and I live in St. Augustine,Florida. I am a womens professional motocross racer,and I race the WMA (which is a series of races here inAmerica) and the FIM (which is a series of races inEurope).
Ive been riding since I was about 3 years old, but Ibecame really interested in racing and wanted to racewhen I was 7. I have been racing for over ten years now,and it is my life!
I want to say I am excited to get the chance to write acolumn for ABILITY Magazine; hopefully I can bring allof you into my race world and you will better under-stand the sport I love: motocross!
Last year I started going to Europe to race. I was racingwith girls from all over Europe. Some spoke French someItalian, German...various different languages. There wasnot really a common language, so for the first time in rac-ing I was not the different one. Everyone had to try andfigure out different ways to talk to one another, but wedid, and we all got along really well and had a great timetogether! I think being able to race and ride lets meexpress who I really am, and I am never held back in anyway. If you have ever raced, you know what a terrificfeeling it is and how free it can make you feel. I am luckyto be able to do it for my career.
When I was in France last year, I met a couple of fans.Who came over to me and started to sign. I thought Imissed something, and I asked them to sign it again.Then I realized they were deaf like me and were signingin French sign language! I had no clue what they weresaying, but at the same time I was thinking Wow this isreally cool! I guess I just assumed signing was all thesame..haha. But obviously it is not and I have a lot to
learn if I want to be able to sign in France! It was alsopretty cool to know that there are deaf French peopleout there who love motocross as much as I do!
A couple of funny things happened over in Europebecause of different language situations. My dad is hear-ing and he actually struggled with the language barrierthing a lot more than I did! On one of the trips we tookwe realized we forgot our adapters for our plugs. So wewent down to the front desk and out to the stores tryingto find the converter/adapter that we needed. To every-one my dad asked he used the American sign for plug.So everyone looked at him like he was from anotherplanet! Obviously, being deaf, I am used to trying tomake hearing people who dont know sign languageunderstand me. I told my dad, Let me handle it. Imade up some simple gestures for the people to explainto them what we were looking for, and they understoodme right away! It was kind of funny because my dadwas just stuck on the whole signing thing becausethey couldnt understand English!
The next funny thing that happened was in Italy whenmy dad tried to order a pizza. The waiters didnt knowany English and couldnt understand what my dad wastrying to order. So my dad again tried to sign to themand used the American sign for pizza! They still didntget it..ha ha...I stepped in and made a circle with my fin-ger and sprinkled toppings on. Guess what?? Theyunderstood me!
My butt was shoved into the padded bucket. Myfeet were wedged into the harness that sat nearthe front of the wide board. My arms wereclinched around the buckets bars, almost to the point ofhurting because I was gripping so tightly.
Tell me when youre ready, a voice shouted.
With that, the boat in front of me took off, the tight ropegave me a slight jerk and I floated to the top of LakeMartin. I was water skiing.
The adaptive water ski was a roll bar-like bucket that ismounted on a skiits wide, much like a snowboard forstability. Once a skier is in the bucket, the rope goes fromthe boat to the ski and wedges through the slit in thefront. A rubber ball on the rope is also wedged between ahard foam mount so the rope stays in place, and the han-dle to the rope sits between the skiers legs. Once up onthe water, the skier has the opportunity to grab the ropeshandle and jerk the rope out of the wedge for greater con-trol on the water and ability to change direction across thewaves. Two volunteers trailed the skier on a jet ski, readyto react when the ski went downfor safety, and to helpload the participant back onto the ski.
As complicated as it may read on paper, its ratherstraightforward. My only fallback: I couldnt move my
upper body forward enough to reach the rope, so I sim-ply rode along behind the boatstill, it was a fantasticride at that.
Water skiing was just one of the outdoor activities avail-able at the Adventure Skills Workshop (ASW), heldeach year by the Shepherd Center at Camp ASCCA inJacksons Gap, Alabama. This year, 60 campers partici-pated in watersports like riding jet skis, tubing, waterskiing, scuba diving, canoeing, kayaking and waterpolo. Also available were ATV rides, a climbing walland shooting, among other activities. The cost was $150for a three-day weekend in a summer camp setting foradultsmeals were family-style, and lodging was in acabin where as many as 12 campers slept in bunks.
Participants backgrounds varied, from disability tocareer. Campers had spinal cord injuries and diseases,acquired brain injuries, multiple sclerosis and other neu-rological disorders. There were math professors, sportswriters, former Proctor & Gamble professionals, mili-tary veterans, college students and, well, competitivewater skiers.
Campers were encouraged to participate in as manyactivities as they wanted. Each activity station was setwith staff members and volunteersas many as sixworkers were there to help participants transfer to theactivity, whether it be from crutches like myself orwheelchairs like other campers. Many of the campers
had existing relationships with the volunteers simplydue to their rehabilitation time spent in Atlantas Shep-herd Center. Still, it was clear that some of the camperswere not yet comfortable enough to dive in head-first insome of the intense activitiesat the end of each day,the campers who were dry and clean typically hadwatched the activities rather than participate.
Returning campers had been through the process before;they had favorite activities, and that was primarily whatdrove them to return to the camp. One participant, Glen,used a power chair and had been coming to the campsince Shepherd had been hosting it. He liked the watersports, but this year a recent skin abrasion kept him outof the water, so he spent most of the time on the ATVtrails riding 4-wheelers. Another camper, Bryan, spenthis final day at the camp shooting guns. Im thinkingof changing careers and being a sniper, he joked.
Some campers brought attendants with themBryanbrought his mother along to experience the campwhileothers came alone. The first day was just like any camp,full of introductions, conversations about hometowns, thecommon question of How many times have you been tothe camp? and of course discussions of disabilities.
It was those conversations that opened my eyes. Ihavent been exposed to many others with disabilities.Having cerebral palsy since birth, rehab isnt part of myweekly schedule, and I havent spent a great amount oftime in places like Shepherd Center for therapy. Many
of the campers, on the other hand, experienced injuriesthat changed their lives, and also spent months or longerin Shepherd for rehabilitation. Having open conversa-tions about injuries and the different lifestyles was goodfor me to realize that everybody deals with personalhurdles differently.
By Sunday, when it was time to go home, the disabilityconversation was gone. It didnt matter if one camperused a power chair since birth while the other used amanual chair for the last year since her accident. Whatdid matter was how many activities the camper did, andthat contact information was exchanged to keep in touch.
Walking into the camp, my goal wasnt to make friends.It was to water ski. I did that, and I accomplished moreover the weekend than I anticipated. But I also fosteredrelationships that will be rekindled when I sign up forASW next year.
by Josh Pate
Adventure Skills Worskshopshepherd.org/resources/aswadventureskillsworkshop.asp
All of a sudden it hit me. I am blind, I am divorced and I am alone.Never had I imagined that losing my eyesight wouldhave such a devastating impact on my self-concept.Every venture outside the familiarity of my home beganto pose too great a risk for pain or embarrassment. Itwas the reason I left my profession as a banker andwithdrew from my friends and family. My lack of confi-dence had changed who I was.
Before retinitis pigmentosa began to rob me of my eye-sight, I lived what many people consider the perfect life:I had a fabulous marriage, healthy child and beautifulhome. A degenerative disease is interesting, becauseoften people dont experience symptoms at the time ofthe initial diagnosis. In my case, it was not until ten
years after my diagnosis that my vision became soimpaired I was unable to drive, shop or walk safelythrough my neighborhood. I felt as though I had becomea shell of the person I once had been.
After my divorce, I realized that I had stopped living. Ijust existed. One day, inconsolable and curled up in aball on my floor (which was a good day because I hadactually gotten out of bed), I had a moment of clarity:something needed to changedramatically. I began tothink about my son who may be affected by this heredi-tary disease. For both our sakes, it was imperative Istopped playing the victim and gave myself a chance tosurvive.
Volunteerism became my recourse. If I could help otherpeople the way I had prior to losing my vision, I thoughtI might be able to lift myself out of a sea of self-pity.The skills I possessed from my banking days weretransferable, and I knew I could be an asset to an organi-zation if they would look past my visual impairment andgive me a chance to serve.
A simple Google search of volunteer opportunities inthe Indianapolis area led me to a place that wouldbecome a catalyst for a life-saving transformation.Bosma Enterprises, the second search result, was notonly located a mere three miles from my home, but italso served people who were blind or visually impaired.After meeting with the volunteer coordinator and tour-ing the center, it was apparent that volunteering wouldgive me the opportunity to make others the center of myattention and consequently focus less on my own prob-lems. In addition to the intrinsic benefits that come withvolunteering, being at Bosma also presented an unex-pected reward: the opportunity to meet a diverse groupof successful, educated and productive people who weretotally blind.
One of my first volunteer assignments was to help aman who had lost most of his eyesight as a result ofmultiple sclerosis relearn how to sign his name. I triedto imagine what it would feel like to be an adult, a col-lege graduate, and not able to sign my own name. Whilemy functional vision was reduced to looking at theworld as through a straw, I realized that I was blessed tostill have my health and to not have to deal with manyof the additional obstacles others encounter on a dailybasis. Admittedly, I felt guilty for spending even oneday feeling sorry for myself.
Along with his rehabilitation teacher who is also blind, Ispent several sessions working with this man to perfecthis signature. Since the multiple sclerosis had severelyimpaired his coordination, we first started by writing hisname on a white board. Within weeks, the man was ableto sign his first name within the confines of a signatureguide: a credit card-sized aide that people who are blinduse to know where to place their signature. Thinkingback on that time, Im still deeply moved. It was the
perfect experience for me at a pivotal time in my life.
After four months as a standard volunteer, I was recruit-ed to be an AmeriCorps VISTA (Volunteer in Service toAmerica) assigned to Bosma Enterprises. Often referredto as the domestic Peace Corps, the AmeriCorpsVISTA program is a federally-funded, national serviceprogram committed to eradicating poverty. With a 70percent poverty rate among people who are blind orvisually impaired, I seized the opportunity to help makea difference by assisting in the development of Bosmasvolunteer program.
In my ten months of service to my country, I have hadthe opportunity to recruit volunteers and to fundraise.While I am thrilled to have exceeded my initial goals,the accomplishments Im most proud of werent even onmy work plan. Developing an Internal Volunteer (IV)program was my version of paying it forward. The IVprogram trains Bosma employees to volunteer for othernonprofits and then works with local organizations toprovide meaningful service opportunities for the newlytrained volunteers. I knew the impact volunteering hadon me, and I wanted to share this opportunity to serveothers with the people in our organization.
Since the IV programs inception last fall, about a thirdof the 150+ employees at the company have attendedtraining, with more than 30 actually serving in the com-munity. A recent highlight of our volunteer activity cen-tered on an ABILITY Build, which brings people withall types of disabilities to help build a home for a low-income family. After driving for nearly two hours to get
to the site, our team of blind and low-vision volunteerswas quick to grab the necessary tools, listen to a brieftraining and get to work! Whether our volunteers werehanging sheeting on the exterior walls or gluing insula-tion in the homes crawl space, we were quick todemonstrate our vision impairments werent about toslow us down! In fact, when work in the crawl spacewas being delayed until lighting was run, one of the vol-unteers pointed out with a chuckle the light wasntgoing to make any difference... and work commenced!
Typically Bosma employees who are blindespeciallythose with secondary disabilitiesare on the receivingend of service. It truly changes a person to have theopportunity to give, rather than be given to. It is thisunderstanding coupled with my personal experiences asan AmeriCorps VISTA member that prompts me to pro-mote disability inclusion in national service. Throughmy year of national service, my confidence in my pro-fessional abilities has been restored, and I have beenable to produce tangible and measurable results. Volun-teerism has become my stepping stone to initiate myforay back into the workforce and to leave the disabilityincome I have received behind.
I have been with vision and without. And with just afew exceptions, I can do everything I did before; some-times it just takes a different approach. All I had to dowas get out of my own way to make it happen.
by Lise Cox
Our team of blind and low-vision volunteers
For HSien Hayward, the rewards of internationaltravel are boundless. A graduate student at Har-vard University, Hayward has traveled to thirty-five countries on four continents. It was an undergradu-ate study abroad experience in Spain, however, thatsparked a lifelong desire to travel with confidence andjoy to some of the most remote places on earthand toturn heads in the process.
Hayward, who has a spinal cord injury and uses awheelchair, heard enthusiastic stories from friendsreturning from study abroad programs and decided shedidnt want to miss having her own overseas experi-ence. As a person with a disability, I think its impor-tant to challenge my and others perceived barriers tointernational travel. I heard from others that I couldntmake it work, and then, of course, I had to go! On a per-sonal level, it was important for my sense of self toknow that I could do anything.
During her junior year at Stanford University, Haywardapplied to study Spanish and Spanish Art/Architecturein Barcelona, Spain, through Portland State UniversitysInstitute for Social and International Studies (ISIS) sum-mer abroad program. At the time, she was hesitant to doa semester or year abroad in a country without a lawequivalent to the Americans with Disabilities Act(ADA). The great thing about ISIS was they offered aone month summer program, and I knew I could do any-thing for a month. Stanford didnt offer a Spanish studyabroad program, so most students who wanted to studySpanish abroad chose the ISIS program. Over the years,Stanford had developed a relationship with ISIS and allof the credits were transferable.
Location was also a factor in Haywards decision to study inBarcelona. Its a center of art and architecture, so I knew itwould be a culturally rich experience. Also, its located on theMediterranean coast so it was guaranteed to be warm and beau-tiful, and finally, because Barcelona hosted the 1992 Olympics,I had heard that wheelchair access was improved. Once shearrived in Barcelona, Hayward discovered unexpected benefitsto the ISIS program, as well. A great thing about the programwas it wasnt just for American students. I met an incredible net-work of friends from all over Europe that summer, a handful ofwhom Im still in touch with 10 years later. I think that hadsomething to do with the intensity of study abroad experiences.
Everyone was out of their elementit made for a really intensebonding experience.
Prior to her departure for Spain, Hayward didnt know howresponsive the study abroad staff would be to her questions andconcerns regarding accessibility. I went into it knowing Iwould have to be prepared to advocate for myself, but the pro-gram staff was wonderfully responsive, both in the U.S. and inBarcelona. Although they hadnt had a lot of experience withpeople with disabilities, they were eager to learn and never treat-ed me like my requests were anything but an exciting learningexperience for them. Its all about teamwork and knowing howto communicate your needs without alienating others.
Although Barcelona is relatively accessible compared toother cities in the region, finding a host family with anaccessible home was challenging at first. It was also anarea in which Hayward had to advocate for herself. Forsome people, accessible simply means a first floorentrance, but the most recurrent challenge I find is bath-room access. I also had to work out what was essentialversus what was desirable. For example, I was asked ifit was ok if an elevator stopped four inches above thefloor. In my case, it was, but six inches would have beentoo much. In the end, Hayward was placed with otherstudents in a bed and breakfast type accommodation runby a local woman and her son. The mutual regard andfriendship Hayward developed with the program coordi-nator in Barcelona helped to make the placement possi-ble and bridge cultural differences. My host motherspoke Catalan, not Spanish, and the site coordinator wasable to communicate my needs to her in Catalan. Ivediscovered that if connections can be forged, its worththe extra time. It pays dividends in the end.
Although her study abroad program lasted just onemonth, Hayward took advantage of every moment toexperience the local culture through both group andindependent travel in the region. She and her fellowstudy abroad participants traveled by train to the Sal-vador Dali HouseMuseum and the Picasso Museum,and viewed Gaudi architecture all over Spain. She alsoset off with friends for some unique cultural experi-ences, including the Running of the Bulls in Pamplona.That was a fantastic experience and I think that beingin wheelchair was actually an advantage because peoplemade room for me in the crowd. It turns out I was
watching right up against a fence where the medics hap-pened to be, and at the end of the race they startedrolling me towards an ambulance assuming I had beeninjured in the race. I guess it didnt occur to them to askwhere I had gotten a wheelchair so quickly! My wholetrip was dotted with these types of funny experiences.
Hayward emphasizes that her enjoyment of Spainhinged on a willingness to request and accept help fromstrangers. Access in many places is simply not avail-able. Going into a situation with that expectation ishelpful, as is knowing how to attract and direct helpers.
The first things I learned to say in Spanish were helpand where people should place their hands on mywheelchair. My adventurous attitude made it fun forothers to help find access. In fact, having traveled tomore than thirty countries, Hayward has discovered thatan inaccessible physical environment doesnt alwaysmake a place inaccessible. There are definitely somethings about other countries that make life easier. Forexample, a greater desire on the part of strangers tohelp. Here in the U.S., I often find that people do notoffer to help because they dont want to offend me, butwhen Im struggling up a steep hill, I would love help.In Barcelona, I was carried up seven flights of stairs towatch a bull flight! In fact, I was basically carried allover Spain by strong strangers, and that willingness tobe carried made it all the more wonderful because I gotto experience so much more.
In Barcelona, Hayward also made fast friends with theyoungest members of the local community. The chil-dren were the ones who helped me the most. Theywould hail a taxi for me, help to disassemble and placemy chair in the trunk, then run via side streets to mydestination where they would do it all over again inreverse. It was a surprising and adorable experience.They had such open little hearts and enormously curiousminds, and were young enough that they didnt have asense of what a person with a disability supposedlycould or could not do.
Although she had traveled internationally before spend-ing a month in Spain, her study abroad experienceuniquely effected her ability and desire to travel in thefuture. Because it was a cultural immersion program
where I didnt know anyone beforehand, and because Ihad very little experience speaking Spanish, I developedtools and techniques that summer for traveling any-where in the world, simply because I had to.
In the years since her study abroad experience inBarcelona, Haywards infectious confidence and zealfor adventure have taken her to countries as diverse asMongolia and Costa Rica as a volunteer with UnitedCerebral Palsy (UCP) Wheels for Humanity. In additionto helping others, Hayward believes that her presencealone in countries without progressive disability rightslaws expands local awareness of what is possible forpeople with disabilities. I had a powerful experience inMongolia where I met peers my age with spinal cordinjuries. It hadnt occurred to them to press for inclusionin higher education even though they had a strong desireto go to college. The universities did not have ramps oraccessible bathrooms, and the students perceptions oftheir own limitations were so strong that they didntconsider advocating on their own behalf. Haywardlater learned that one of the students she met in Mongo-lia decided to approach the administration at a local uni-versity to discuss ways to make simple and inexpensiveaccommodations in order to pursue her higher educationdreams. She adds, I have a strong belief that anywherein the world when people with disabilities act in a waythat does not conform to the medical model of disability,it subtly changes the face of society.
by Stephanie Gray
Stephanie Gray is a consultant with the National Clearinghouse on Dis-ability and Exchange, which provides free information and referral ser-vices to increase the participation of people with disabilities in interna-tional exchange programs.
HSien Hayward is a graduate student in experimental psychology atHarvard University where her research is aimed at improving the livesof people with acquired disabilities, including spinal cord injuries. Sinceher study abroad experience in Spain, Hayward has volunteered abroadwith United Cerebral Palsy (UCP) Wheels for Humanity in Mongolia andCosta Rica and traveled to Thailand following the 2004 Asian Tsunamito conduct trauma recovery workshops with colleagues in the mentalhealth community.
National Clearinghouse on Disability and Exchangemiusa.org/ncde
HSien Hayward international volunteer
Excerpts from Aldon E. Cotton
Born in 1968, Aldon E. Cotton is the youngest of six boysraised in Back of Town by church-going parents whoworked around the clock to provide for their family. As achild Aldon showed talent for music, determination, spir-ituality, reasoning ability, and sociability were alreadyclearly visible in Aldon before the first of many nobody-but-Jesus moments at the age of fourteen when a trainaccident changed his way of doing some things. At theage of twenty-two, he began pastoring at the onlychurch he has ever known, Jerusalem Baptist Church inCentral City. After doing everything possible to preparehis congregation of 160 members for the evacuationfrom the city, including Mapquest instructions and emer-gency phone numbers, he caravanned along with thirtychurch and family members to Greenville, Mississippi,on August 28, 2005.
This interview was conducted on February 14, 2008 inLuling, Louisiana, the site of Cottons temporary homeand gateway to New Orleans, the city of his calling.The small home was comfortable, pleasant, and unos-tentatious. Cotton was wearing a beige, silk turtlenecksweater. A spellbinding storyteller, Cottons contagioussmile, mellifluous voice, and hearty laugh animatedhis stories.
Iwas born in 68. Im the youngest. Growing up in ahouse with five older brothers, I always had noise.Silence disturbs me. My mother came from a town called Vacherie,Louisiana. Its about fifty to sixty minutes from NewOrleans. I would spend my summers in Vacherie. Mygrandparents in the 70s were still living in a planta-tion house on the Laura plantation. As kids, we went inthe sugarcane fields, but we played. My grandparentsdidnt have a formal education, but my grandmotherknew how to feed thirteen children with one chickenand you couldnt cheat my grandfather out of a penny.
I grew up at in a shotgun house in an area called Back ofTown. Its adjacent to Central City, and its a few blocksfrom an area called James Alley, where Louis Armstronggrew up. We were known as the church-going family.We were always in the choir. We would have familyrehearsals at home, and a lot of times we would be inthere singing. Then wed hear somebody say, Singanother one! Wed go to the door and we may have hadten to fifteen people standing in front of the gate.
When my mama planted something, it would grow. Sheloved flowers in the front yard, along and up the fence,everywhere. Mama was doing peoples hair when I waslittle. My father was working fulltime trying to go toschool in Baton Rouge, where he went to Southern forhis masters degree. Sometimes he worked two jobsplus playing for three or four churches. He was work-ing in Lockport, which from New Orleans at that time
was like a two-hour drive. He was a vocal musicteacher. That was the place that gave him a job. Hewould leave about 5:00 or 5:30 in the morning, drive,teach, come home, get about an hours sleep, go tochoir rehearsal, come home, sleep, and then get up.Wed have to wake him up at 10:15 p.m. He was work-ing at Mercy Hospital at night as an orderly and hedhave to be in at 10:30 at the latest. He was exhaustedall the time. He was adamant that he would not aban-don his children and just always wanted better for us.Hed always tell us, I dont want you all to be like me.I want you all to be better than me.
All of my brothers and I didnt have the faintest idea wewere poor. We had so much love and joy in our house. Ithought everybody had the silver can of peanut butterand the dried eggs and dried milk. I knew there wererich, rich people, you know, when youd go on St.Charles Avenue and theyd say, Thats where the richpeople stay. We had to watch the local news at 5:00,the world news at 5:30, and the local news again at6:00. We would hear about the lower class, but wedidnt recognize ourselves in those depictions.
In 1982, August the 20th a friend of mine, John Buck-ley, and I were going to choir rehearsal at Jerusalem.Normally we would walk over the Broad overpass tochurch. The summer before, he had passed out from aheat stroke. When we got half way up the bridge, and itwas kind of hot that day, so I said to him, Say Bro, letsget under this bridge, because if you have a stroke andfall over the side, bro, I love you, but I aint going overwith you. When we got half way across the bridge,theres a ramp you can go down. So we went down thatramp and when we got to the tracks, the Amtrak trainwas there. This was the second time a train had everbeen there, and we would always walk to church. The train was just sitting. They had maybe five differentpeople standing there. I said, Come on bro, we late.
So we were about three cars closer to the end. So thatswhat we did. If the tracks are like this, you just hop in
Aldon E. Cotton
the middle, then on the other side. Thats what myfriend did. I was right there. The guy at the back of thetrain said, No boy! And when I looked up, I fell. Thetrack was across my chest. I tried to get up and the rockswere slippery and I couldnt get up. Then I heard them,Start rolling. So I tried to roll and the train startedmoving and it dragged me. I was catty-corner to thetrain tracks. The first wheel went completely acrossboth legs. I was pinned under the train by the secondwheel. It was literally on top of my leg.
I said, Jesus! Mama! This peace, this calmness cameimmediately. My friend was losing it, because out of hisperipheral vision, he saw the train backing up, and helooked back. I think he saw it drag me. I think it was thecook or somebody on the back hit the emergency brakesand the conductor came out of the train, looked at me, andran back on the train. The crowd got larger and larger.
The doctor who came to the scene saidthat he never traveled that way home,but the normal way he was going, therewas traffic. He just got off from his shift,sees the crowd, and said, Im tired. Imgoing to go home. He said, Somethingjust stopped the car. He came over andsaw me. He said, Im going to go under-neath. When you hear me say move it, Iwant you to try to move the leg. So whenhe came back, he said. Youre moving theleg. That means the nerves are still func-tional. He asked the conductor, Is there atrain that has a jack? The conductor said,Yeah, but that train is an hour away. The doctor said,This boy dont have an hour. He asked me where Iwas going. I said, I was going to choir rehearsal. Hesaid, Well, we have a priest here. So they called forthe priest, and he opened that black book. I just lookedat him. That aint good. Im hearing, Lord receivehis spirit and all of this kind of stuff. That aint theright prayer.
Then they said, Listen, in order to get you from under-neath this train, Im going to have to amputate. I cantgive you nothing because we dont want you slippingoff into unconsciousness. We need you talking. I said,Go ahead, Doc. Ill be alright. He just kind of satthere and looked at me. I said, You got something youwant to go do? They cut the leg off.
In the ambulance, I said, Im hungry. I want a BigMac. I was so skinny, you could count my ribs. Theygot me to Charity Hospital. They had to take the otherleg off. And they told my family, His heartbeat is low.Infection has gone throughout the body. Weve doneeverything we could do. Hes going to die. My familygot on its knees and prayed right there in the hospital.They kept bringing me back and forth from surgery.
When I woke up, I had IVs all over.
I never went through any type of depression. At onepoint they had moved me from the fourth floor to thesixth floor because I had so many visitors and they fig-ured that I needed more privacy. So Im on the sixthfloor and this psychologist came in. I want to ask yousome questions. Were you trying to kill yourself? Isaid, I just walked over a bridge. If I was going to killmyself, wouldnt I have jumped off the bridge? And if Iwanted to kill myself, why wouldnt I have put my neckon the track?
I got a certificate of prayer from the pope. One of thenuns who stayed across the street from us in the neigh-borhood was going to the Holy Father. Literally sacks ofmail arrived for me. My mother and I read every pieceof mail, and answered every piece of mail. My mothersaid, You need to write them because they want to hearfrom you. But I was still me. Even with people writingme, we remained humble, and we were grateful,
because people dont have to do that. Mypastor would always say, You be gratefulbecause people dont have to be nice. Theydont owe you nothing.
My mama would say, You still have yourhands, you still have your mind. You justhave to find a different way of doing thesethings. I knew from the beginning that Iwas going to be alright. If the doctors saysomething, then you dont have anything toworry about. God told me I was going to bealright. So thats the foundation of why Imable to even handle Katrina.
I grew up poor and lower class, been called a wholebunch of stuff, but I never was called a handicapped. Allof a sudden this accident happened to me and peoplewanted me to go to an amputee camp. I said, forwhat? If you really dont have a personal relationshipwith God, I think youre a handicapped. I was walkingwith prosthetic legs at one time. I gave them up. Withthem Im dependent on people. Without them Im inde-pendent.
One day I was sitting in a class, me and this other guy.Hes paralyzed. And the teacher said, I know yallangry. I said, Tell me something else you know aboutme that I dont know about myself. She said, Youvenever been angry because youre in the chair? I said,no. Im too busy telling God thank you for saving mylife to be mad with Him.
I grew up in a Christian home. I grew up believing. Evenin the hospital, God had told me, I will call you topreach, but not now. My pastor died in January 1990. Igo to class the first week. The only thing thats in mytablet is Jerusalem Baptist Church: structure, outline,budget, programs. Im twenty two at the time. Sitting inclass. Im not listening to nothing that professor said. So Iwent to the registrar and I told him, Im dropping out.
Im too busytelling God
thank you forsaving my
life to be madwith Him.
He said, No, Cotton. I said, Look at these tablets. Hesaid, Son, you need to be where your heart is.
Jerusalem is in Central City. In our second year of pas-toring, we drove around from Broad to Claiborne, fromWashington Avenue to Martin Luther King Jr. Boule-vard, and took down every church name. We invited allof those pastors to come to a fellowship breakfast andrecognized that the largest congregation in that area mayhave had three hundred members. We said to them, Ifwe work together, we can change this community. Westarted having community revivals. We had some guyswho were most likely selling drugs. When we wouldhave church, they would sit across the street. And Iwould say, Man, come on in. Nah, Rev. Weve beenlistening. I would go out and play dominoes with theseguys and just talk to them. One guy told me, Rev, Iwould come, but I dont have no church clothes. I said,Look bro, this tie is yours. Now come on in. And sosometimes theyll see me just with a t-shirt going tochurch because I wanted them to understand, it aintabout this at all.
In 04, when they were telling us to leave, about fourfamilies went to Rustin, Louisiana. While up there, wewere saying, We really need to expand this and makesure we know where everybody is. So May or Junethey got together, had about four or five meetings, andcame up with a plan. They shared it with the church andhad assignments for everybody. We had a list of whateverybody should pack for three days. We had all themembers cell numbers. We knew who were going toleave and where everybodys going. Those of us whowere traveling had Mapquest. At 2:00 a.m. Sundaymorning, I got a call. Pastor I found a hotel for every-body. They got rooms enough for thirty people. Theyreholding the rooms. I say, Alright! Wherere wegoing? She said, Greenville, Mississippi. I said, Dothat show up on Mapquest?
When all of this stuff happened, I was sitting in front ofthe television at the hotel in Greenville, Mississippi, andtheyre talking about we wont be able to get back inNew Orleans for three years. Im saying, God, whywould you give me a vision for Jerusalem in NewOrleans on Fourth Street, and this happened? Somebodycrazy and it aint me. I was going back to New Orleansif I was the only preacher back. I would be the pastor ofthe city. Ill pastor anything up in there. It was settledwith me before I left. Im going back to New Orleans.
Pastor Sean Elder, my twin brother in the spirit, calledme while I was in Mississippi. He said, Doc, Im stand-ing in front of your church now. Its bad. I said, really?Look across the street. Do you see that multi-purposebuilding? He said, What? I said, Do you see a multi-purpose building across the street? Do you see our newbuilding? He said, Reverend, I see it. I said, If yousee it, Im coming home! So its about what you see.Its what you as the pastor sees in that community.
The church is being what the church is supposed to be: asource of hope and inspiration. I have seen the transfor-mation. People were coming with all of these questions.People were taking it personally. How come this hap-pened to me? If God just wanted to deal with you, doyou think he would have put everybody out first? Youcant take this thing personally. I dealt with their painand their questions.
God was in Greenville, Mississippi. Every preacher Ivetalked to, wherever they were, says, God was with us.God provided. So what did we learn from this? He isomnipresent. He is faithful. There are certain sayings inthe Baptist church among Black Baptists which you justgrow up hearing. Hes a doctor for the sick, Hes alawyer in the courtroom, Hes a mother for the mother-less, Hes a father for the fatherless. Hes a bridge overtroubled waters. Weve got a roll call. We used to makefun of that as little children, but I understand it in such aclear way now, because Hes all of that and more. So allof these sayings that we grew up hearing has a purpose,a reason, a story behind them, and it is for my genera-tion to understand, to know, and to embrace. This ishow my people were able to deal with slavery and seg-regation, because they knew some way, somehow, Godwas going to deliver them. But you dont really get ituntil you have an experience.
Katrina is an experience because what it did wasreduce everybody to the same level. I lived in theLake Carmel subdivision on the other side of I-10.Down the street is Eastoverthats the million-dollarhouses. I drove through Eastover after Katrina. Katri-na respected them the same way it respected ourhouse. The lesson to be learned is not just for the city,this is for the world.
I know what life is and what life is not. Jesus says it sowell. . . . a mans life consists not in the abundance ofthings which he possesses. I dont need material things.Its convenient. Its nice, but thats not my joy. When yousee the lives of people change for the better, thats whatIm about. In the few years Ive been on planet earth, Ivelearned what it takes people decades to learn because Ivebeen in a nobody-but-Jesus situation under the train. Youlearn to enjoy life. God says, The just shall walk byfaith. I dont need physical legs to walk by faith.
Excerpts from Cynthia Delores Banks
Cynthia Banks, the second oldest of eleven children,was raised in the Desire Project in the 1950s and early60s. She attended college in Long Island, New York ona Martin Luther King Jr. Scholarship, became anadministrator at Hofstra University, married, and start-ed a family of four. At the urging of her parents, shereturned to New Orleans after the death of her husband.Working two fulltime jobs, Cynthia purchased a homeon Lake Carmel in New Orleans East before the storm.
school, he became a longshoreman, and he loved it. Twoyears later, Jermol came home and he said to me,Mom! I love the water. He said, I got to get you toAfrica. Mama, it is so beautiful. The year he was shot,he had just come home.
On July 4, 1992, Jermol was coming out of a K & Bdrugstore in Gentilly, right up around Dillard Universi-ty. My nephew had just come into town to do somerecruitment for the Marines, and they were together. Mynephew got in the car and he said he saw this guy walkup to Jermol but he thought the guy knew him. And theguy asked him, Whats up? Jermol said, What youthinking, doc? He said the guy pulled a gun and shothim right in the neck.
Jermol was in surgical intensive care for seventy-eightdays. They couldnt get him off the respirator. The doc-tor said to me, If we dont wean him off that respirator,hes going to have severe brain damage. We prayedand we believed God. The nurse called me at work one
day, and she said, Ms. Banks, you got toget here. We weaned Jermol off the respira-tor for thirty minutes and he didnt haveany problems.
From that point, he went to rehab for aweek. At rehab I was so angry. It took therehab physician, medical doctor, surgicaldoctor, Rehab director, and physical therapynurse to say to me: There are no resourcesout there for him. We will have to put him
in a nursing home because he is total care. I said, Imlooking at all of this knowledge and money sittingaround this table, and you tell me my sons got to go toa nursing home. I dont think so. His emotions are worththe world to me right now, and you will not destroy himby putting him in a nursing home. It is my decisionwhere he goes.
I brought him home, and between myself and his broth-ers and his sister, we worked around the clock with him.I came to the conclusion, When we go down, we all godown together. We finally got the tubes out of hisstomach, the trach out of his throat, and all of the otherstuff that he had.
When I was at work I would always wonder, God,theres no more money. I dont know what to do. Therewas a two year determination period before he could beeligible for Medicare. So when he first got out of thehospital I couldnt work for about four and one-halfmonths. It got to the point where you say, This thing isbigger than me. I just dont know what to do. The nurs-es from Charity Hospital would visit us. Ms. Banks, wecould come over here two-to-three hours for you. Youdont have to pay me. In the process of that he made somany friends: nurses, and nurses aides, and they wouldall come over. All of his high school friends wouldcome and take him out for lunch. They learned how to
Her oldest son, Jermol Stinson, took a bullet to the neckat the age of twenty-two. Extra-familial networks of car-ing and creativity made it possible for a widowed moth-er of four to keep Jermol out of a nursing home in NewOrleans by allowing her to orchestrate around-the-clockvolunteer homecare.
On a wintry Sunday afternoon in early January 2006,Cynthia Banks spoke openly about the impact of Katri-na on her family. The setting was a sparsely populatedwaiting room in Kendrick Hospital in Dallas, whereJermol was recovering from an operation necessitatedby his stay in a nursing home in Texas. The sensitiveobservations and retelling of the tribulations of othersare particularly valuable in this account of a womanpositioned in an uptown Hospital during and after Kat-rina. Many hospitalized and disabled residents had nomeans of obeying the mandatory evacuation ordercalled the Sunday prior to the storms landfall. Theirsurvival, with the help of families, volunteers, and someofficials, is a story of persistence and triumph over dif-ficult circumstances.
Igrew up in the Ninth Ward, the DesireProject. A lot of really resourcefulpeople came out of Desire. We openedDesire up after we lost our house to firebecause of faulty wires. My family leftaround the time I graduated from highschool in 63.
My dad, Richard Gullette, was achef/cook. He cooked morning, day, and night. At firsthe worked Ochsner Foundation, the Brent House for thedoctors. For thirty-five years he cooked for them. Hecooked at one of those French Quarter restaurants on theweekends, and in between he cut all the neighborhoodkids hair to make extra money to raise eleven of us. Iremember an image of my mother at 4:00 a.m. on herhands and knees stripping hardwood floors, varnishingand polishing them. My grandfather on my moms sidewas one of those preachers in the French Quarter on Bur-gundy Street that had a heart of gold. His congregationwas a lot of the French Quarter people, the jazz playersand all of that, and he spoiled me rotten. He practicallyraised me.
I graduated from Carver Senior High School in 1963. Igot my LPN license in 1969 at New York State Univer-sity, and got a job working nights. I graduated from theNew York Institute of Technology in 74 with a B.S.degree in Criminal Justice. I completed a mastersdegree in Counseling and Education in the early 80s.The week of graduation my husband died during openheart surgery. I moved back to New Orleans in 1985 atthe insistence of my parents. I worked two fulltime jobsthat allowed me to make a monthly mortgage paymenton a house in a subdivision in New Orleans East.
My oldest son, Jermol, is thirty-six. Right after high
He said theguy pulled agun and shothim right inthe neck.
operate his van and his wheelchair. Hes got a powerchair that he operates with his head.
Id do things like buy all kinds of goodies to keep in thehouse and the refrigerator. His friends would come over,Do you want to eat something, Jermol? Do you wantme to go in the kitchen and fix you something? Myfood bill was enormous, but the medical bill would havebeen ten times worse.
I called my sister right before I left that Sunday eveningto go to the hospital with my son. I said to her, Gwen,Jermol will not feel like he was deserted by the entirefamily on tomorrow. Jermol had gone to MethodistHospital before the storm for some evaluations. He wasmoved to Kindred Hospital, a private hospital, after thetests because he developed a fever. In the process of thatthe hurricane hit. The week in the hospital was one ofdesperation. I think the greatest concern was the onethat nobody really had before the hurricanethe flood.We knew that there was a hurricane coming and weneeded to prepare to have food and water. We knew thatwe needed to be able to make sure that the places andthe areas that people were in the hospitals were safe,that there wouldnt be flying glass, but nobody, nobodydreamed that in the week to come the situation wouldbecome worse. So we all prepared for two or three days.
The staff showed so much compassion for the patientsin the process of trying to prepare them for the movefrom New Orleans, and at that point they didnt knowwhere they were going to be evacuated to. The hospitalhad already negotiated for the patients to be airlifted outand taken to another hospital that Wednesday. Somepatients were already on the first floor on mattresses onthe floor preparing to be removed.
I think the hardest part of that process for me waswhen the National Guard came in. I think thats wheneven more confusion ensued. They arrived thatWednesday and said, Nobody will be airlifted. Youhave a generator thats giving you a little light. Wehave places that have no generators at all. We under-stood that. We had no idea that it was going to takefrom Wednesday till Friday. The buses that they hadnegotiated to come in were on hold. The federal mar-shals wouldnt let them through.
We scraped and really scrapped to save water for thosethat really needed the water. There were patients thatwere in ICU there that had no water, no food. Those indi-viduals, of course, came first. You had so many peoplethere: workers and the workers families, other patientsand those patients family members. Everybody wantssomething to eat. Everybody is in fear because whennight comes the hospital is dark. Everybody is asking thequestion when. People are becoming anxious and impa-tient, and they just want out. They no longer want to hearthat weve got a plan, and were implementing that plan.So we had people lying on the floor from Wednesday till
Friday not knowing how we were going to get out ofthere. At this point my major concern was, Lord, dontlet me have to put my son downstairs on that floor in thatdoorway of the first floor, where people are constantly inand out. His intravenous is not going to work there. Itstoo unsanitary. They wanted to move him down, but Ijust refused. They were also very empathetic with me. Ikept him up there in that room until the emergency unitswere not only at the hospital but were ready to go.
I let them take Jermol down, and when they took himdown, they took him right into the emergency unit,which was a little more sophisticated than an ambu-lance, because it had enough equipment in it to sustainhours of travel by land. When they began to move thoseemergency units out, all they could do was put twopatients in there at a time.
The National Guard that was at the hospital, I must say,were very, very human. They were firm, but they werevery human. They took the time to explain and talk aboutwhat happened. They explained that when they left, therewere stories of all kinds of looting and stuff that wasgoing on in the city. They explained that they would findroutes that would avoid having to go through the water.
It took us hours to get to Texas because of the route theyhad to take to avoid water, a lot of trees and electricallines that were down in the street and things of thatnature. It was getting dark. But once we got into Pasade-na, Texas, those people at that Kindred had food ready,drinking water, and bath water to bathe the patient. Theyhad a welcome party waiting for those people. The younglady that came into my sons room earlier tonight, shewas one of the people in Pasadena. When my son andother guys came in that were completely handicapped,even though she knew it was time for her to get off fromwork, she said, We need to bathe these guys up and getthem comfortable so they can have a good nights sleep.So they brought comfort into a situation where peoplewere just physically, mentally, and emotionally exhausted.
I was told that the fastest way to get services for my son
Church. And they said that they would do what needed tobe done in order to make it handicapped accessible, andthey would work with ADA. Theyre widening the bath-room door, putting a shower in the bathroom, and stufflike that. I met a Mexican guy who worked with floors,and I talked to him about some carpeting. He said, Ihave a huge piece of carpet left from some work I did.Ill let you have it. You just have to pay for the labor.Come put it down, I told him. I dont care what colorit is, I dont care what it looks like. Is it clean? Thats allI want to know. I said to him, I dont want carpet inmy sons room on his floor. Id like to have someceramic. He had all of this ceramic that he had from achurch that hed done, and he told me it was like $2.00and something a square foot, and he let me have it for$.50 a square foot. Bring it! Its beginning to reallytake shape and look like a home Id feel good aboutbringing my son to.
I believe God allowed me to go through this wholeprocess to show me how getting New Orleans backtogether is going to happen. Its going to happen withlittle parts of everybodys heart coming together saying,This is what I have. And then us being able to have avision to say, I dont care. Bring it. It would be abeautiful thing to be a part of seeing the lives of somany hurting people being mended.
Im not a singer, but during my times of greatest concernand greatest fear of what tomorrows going to bring, Ialways hum old spirituals and I find so much relief. Itslike new energy. Its the same kind of built-in resiliencefrom experiences that will bring the citizens back to NewOrleans to begin to rebuild and to work through theissues that theyre facing right now with the system andits own agenda. Were all seeking for the same identicalpurpose: to be heard, to be treated fairly and with justice.I look at tomorrow as being very promising, because itleads to learning new strategies of being able to over-come, to be able to find a way to make a way.
is to put him in the nursing home for forty-five days,because it will take forty-five days to go through thepaper trail. And if hes discharged from the nursinghome to home, he will have completed the requiredpaperwork, determined whether or not hes really eligi-ble for state benefits, and hell be able to get servicesright away. Otherwise, hes going to have to go on atwo-year waiting list.
It has been almost ninety days now with my child in anursing home. It was hard on him psychologically to bein the nursing home. He said, Mama, theres five dif-ferent levels of urine in here you smell from the timeyou hit the door till the time you get to my room. I dontwant my friends to come in here. He was ashamed. It ispsychologically, emotionally, and socially challenging.He had to have an operation because he developed a bedsore on his hip that got infected. He wasnt beingturned. He couldnt eat the food because there was notaste to it.
Jermols home care in New Orleans worked with himbuilding relationships with people pitching in to help. Thathas placed a lot of uncertainty in our lives now. All of thathas been disrupted, and he keeps saying, Ma, what arewe going to do? I think hes got an inner fear that pre-sents itself in our conversations sometimes of going backinto the nursing home from this hospital. He keeps saying,Mom, you worked so hard for twelve years to keep meout of a place where Ive now ended up in. I keep sayingto him, Jermol, God was ever present in the beginning,hes present now in the middle. We thank Him on a day-to-day basis and just keep moving forward.
Im committed to Dallas as long as it takes New Orleansto come out of its blight and begin to do something tocreate an environment that would look anywhere nearhealthy for my son to move back to.
Its taken me some time to find a home for my son and Iwas fortunate enough to get it through HUD because myhome is in the disaster area and because I have a sonthats handicapped. They tell me those two things togeth-er qualified me. The lady from HUD called me: Ms.Banks I found a house for you. Its in Louisville, Texas.I said, Where is that?Its about two hours fromwhere you are now. Ive created an environment for myson here where Im working on resources. I found outhere in Dallas that there are independent services for thedisabled. I had just gone through being able to access ser-vices in DeSoto county. So I said, It needs to be some-where close to this area where I am. His doctor is here.Then she found a house that was in Lancaster, Texas. Isaid, Great! I go to the house and I see this raggedy,falling down gate and this filthy rugit looked like theyhad a dog in the house. I stood there and I closed myeyes, and I said, Lord, this could become a mansion.
So I went and bought some paint. Then I got on thephone and I was able to get in touch with St. Michaels
Excerpts from Jermol Stinson
Born in 1969, Jermol Stinson joined the MerchantMarines at the age of eighteen and traveled around theworld. While home on leave four years later, Stinsonwas a victim of violence that left him paralyzed from theneck down. In New Orleans, friends and family providedround-the-clock care at home, even before there wasmoney to pay anyone. A practicing Muslim, Stinson wasrecovering from an infection at Kindred Hospital inuptown New Orleans immediately prior to Katrina. Hewas trapped in New Orleans during and after the storm,and during the storms aftermath he wandered in hismind throughout the city, as he actively worried abouthis family and friends. Once he was stabilized in Dallas,he entered his first nursing home. Hurricane Katrinaand the subsequent flood seriously damaged or disrupt-ed the sources for Jermols independence. He lost hisexpensive, adaptive equipment and an intimate familiarity
with his city of residence, but more importantly, thestorm scattered his extended network of friends andfamily, who enabled both Jermol and his mother, Cyn-thia Banks, to live full lives. The constant stream of visi-tors in and out of his hospital room is an indication ofhis charisma, essential to restoring his stability so thathe can draft a new roadmap for his life.
Iwas born in 1969. I grew up in New Orleans East inthe area called the Gap, where my grandmother lives.My grandmothers house was full of lovefull ofhugs, kisses, kids, grandkids, and a lot of aunts. Goodfood all the time. It was a beautiful childhood. In the mid-80s, we moved to Lake Carmel, a middle-class subdivi-sion in New Orleans East built around a small lake. Therewere always a lot of kids from the neighborhood in myhouse. Were still friends until this day. We played foot-ball and raced from one streetlight to the next streetlight.
My grandfather Stinson lived inthe Uptown area off of Louisianaand Freret Street. He repairedrefrigerators and ran a bar andlounge on Washington Avenue. Iwould catch the bus up there andspend the day with him, learnabout him and his life and what itwas like. He accepted me, showedme things, and taught me how tocook my first pot of neckbones. Ijust knew my son and I wouldhave been thick as thieves.
I was injured in 1992. I was twen-ty-two. Even during the accident, Ialways felt safe in New Orleans.As far as Im concerned, I look atit like the enemy was assigned tome that day to take my life, but hedidnt have Gods permission.
At first, all I thought about was myself, what I lost, whatI wouldnt be able to do, how alone I was, and how Iwouldnt be able to be a lover to my girlfriend, or afather to my son, and a big brother to my family. I want-ed to die every minute that I was awake, every day. Icouldnt breathe. I had to be suctioned, it seemed likeevery fifteen minutes, and that was a pain I will neverforget. I couldnt be left alone. I had giant bed sores. Ifelt like my life was over.
My mother is a soldier and so is her sister Pat. Theyhave everything except the combat fatigues. In thebeginning it was so hard, because my mother foughttooth-and-nail for Medicaid/Medicare. And I watchedmy mother suffer and felt that she didnt deserve whatlife was giving her as far as her son was concerned. Shewouldnt let me go in the nursing home. I wanted to goin the nursing home, because I knew in the nursinghome I wouldnt survive very long. But I would wakeup and my mother would be sitting at my bedside.
Whether I was at the hospital or at home my mother fedme. She has stuck by me for thirteen years.
After I began to realize that the enemy took two armsand two legs away from me, but God blessed me withhundreds of more arms and legs, I realized that I wantedto live. After I started wanting to live, I started to see thesun through the cracks of my windows. I would be like,Open up my curtains! No matter how my day went, Iwould always look for one good thing out of a day, andthink about that thing at the end of the day.
In the beginning, I had a male aid that would come andtake care of me seven days a week. He would suctionme, give me a bed bath, shave me, and change the dress-ings on my wounds. I had two giant wounds on my hips,a wound on my sacral, and both of my Achilles tendonswere exposed. It would take him like two to three hoursof his own time.
I have a friend by the name of CalvinFletcher, and my brother, Dwyan, whenthis first happened to me, they went to C& A School to become certified nursingassistants, so they could take care of me.Calvin, Ive been friends with him foralmost twenty years. He brought me moreawareness of what it means to be a Mus-lim. My brother, of course, is my numberone. Guys that grew up in that neighbor-hood, I mean they were younger when Iwas growing up, but they would comeand get me up, and take me out. Youknow, Whats going on?
As a matter of fact, one of my bestfriends, Anthony, I met him when he wasfifteen, he was going to St. Aug. I wasmaybe twenty-five. I was just coming out
of my depression. Instead of this kid being out on thestreet playing and doing the things that a fifteen-year-old should do, chasing girls or whatever, he was in myroom suctioning me, coming home from school, anddoing his homework on the floor. Are you alright J?He grew up to be the kind of man that I expected that Iwould be. When I tell you that these guys are family?Theyre my brothers.
Back home I could go anywhere I wanted. We would goout to the movies, to plays, to dinner, and to parks. Theywould have this thing in the park every other Sundayduring the summer, and we would go out and enjoy thecook outs. I mean you had to step over the people.
We hardly ever locked our front door. And were talk-ing about New Orleans. Were talking about the placewhere crime was outrageous. I mean the front doorwas left open. If someone wasnt there, someone wason the way.
The people in my neighborhood, I mean north, east,
After I began torealize that theenemy took two
arms and two legsaway from me, butGod blessed mewith hundreds ofmore arms and
legs, I realized thatI wanted to live.
west, south. My neck was always hurting from wavingwith my neck. Somebody was riding past to talk to me,How you doing? I love the people of New Orleans. Imiss my family. When I say my family I mean every-body. I wouldnt want to be a quadriplegic anywhereelse, not even in New York, but in New Orleans,because the people there made themselves so availableto me.
I would talk to young offenders at Bridge City in JeffParish. There would be a group of young kids thatwould come into the room, and Id already be waitingfor them. Theyd be doing their thing, and being asthuggish as they possibly could, so that they could behard. By the time I finished telling them my story, theywould be crying like little girls. And I would be cryingbecause I would explain to them in graphic detailabout what had to be done just to take care of me, andhow much my mother had given up, just because ofsomeone elses recklessness, because they couldntcontrol themselves for whatever reason. It was realtherapeutic for me.
My doc transferred me from Methodist Hospital in NewOrleans East where I was undergoing tests to KindredHospital in Uptown a few weeks before the storm. I didnot know how extensive the damage was, becausewhere we were, it was dry. There was just a lot of downtrees. My room was the only room that had a televisionand an air conditioner that was working. My mother, myaunt, and my little cousin were in that room, and I wasfriends with everyone.
When the food started running out, it got a little tight,and everyone was uptight worried about their family.We were able to watch the news on the television.Everyone shared with everyone. I couldnt have been ina better place. Kindred did everything it could to makesure that my family, myself and other patients werecomfortable and taken care of. They didnt abandon uswhen they had every excuse to. I was actually one of thelast patients to leave. And someone was there from Kin-dred until the time we left.
The National Guard was very concerned about me.They were very concerned about all of their patients. Itwas real tense because they had their weapons out. And
it was a serious situation. But they took time to come,sit down, talk with me, make sure that I was ok, and thatI was comfortable. I was treated real, real well by theNational Guard.
I was told I was being evacuated to Houston. I ended upin Pasadena, Texas. When I got there, they were ready.The first half hour that I got there, I was bathed by Feli-cia, a nurse who worked past the end of her shift. I real-ly needed it. I was fed and put in a clean bed. They gaveme a cell phone to call my mom, and I had never reallycried for years, but when I was on the phone with mymom, Im not going to front, I cried like a girl because Iknew that she was safe.
After Pasadena, we were evacuated to a Kendrick inDallas, and once again I needed a bath when I got there.The young lady who came in with her husband thisevening, Teresa, was the person that gave me a bath. Islept for two days. She was the last person I saw beforeI went to sleep and the first person when I woke up.Shes my first friend that I made here in Dallas.
Id never been in a nursing home before Katrina. Thenursing home was every bad experience that I had everheard about. It wasnt clean at all. One of the first timesI walked down the long hallthe levels of piss that IsmelledI was like, I cant believe this. It didntmake me cry. I think at times they tried to. There werelike forty people to one nursing assistant. I didnt have acall light. I had to depend on my roommate, a blind guy,to pull the call light.
They didnt have an adequate bed for me. I got bedsoresas a result of not being turned enough because of thebed. The bed that Im on now in Kindred Hospital ispretty much like the bed I had at home, so I really didnthave to be turned as much at home. When I was at homeI was up and out more. At the nursing home, I was sur-rounded by people that had Alzheimers, so that reallydidnt give me a reason to want to come out of myroom. The food was ridiculous. My mother brought mesomething to eat every day. But in every bad instance,Ive always been able to find a friend. I found two orthree people there that took good care of me.
When I came back to Kindred for surgery because of thebedsores, my doctor let me know that I was depressedbecause of the nursing home. When I was in the nursinghome, there were no phones in the rooms. You had totake what they gave you and be satisfied. I shucked andgrinned a lot. But what I really missed was access to myfamily and my friends.
I made real families at Methodist Hospital in NewOrleans, where I heard there was so much disaster. Iknew all the nurses. I knew the cafeteria workers, allthe doctors, the CEOs and the ancillaries. I knew every-one right down to the janitors and the gardeners.Theyd even come and speak with me. I really, really
miss New Orleans! There is no other place like NewOrleans. My community, my neighborhood, and mycity are gone now.
I lost my computer in New Orleans. The state troopershad a one-time deal where they allotted me and a lot ofother quadriplegics a grant where we were able to getequipment, and be able to get our equipment fixed. I lostmy Dragon Dictate, where it allowed me access to theinternet, to turn on and off a television, my radio. It wasall voice activated. It answered my phone and raised myhead on my bed. It enabled me to turn the lights off andon, and even to answer my front door, even though itwas always unlocked. I could be left alone. I was con-nected to the rest of the world with the internet. I reallymiss that part of my independence.
One day not long after I arrived in Dallas, I called alocal mosque, and explained to them that I had losteverything. They understood that included the Koran.Before the day was over, the Imam made a deliverywith his son. For the record, Allah is the best Knowerof all things. There is no God but Allah. Jesus is theMessiah. My faith and my mother kept me strongthrough this ordeal.
It will be a while before Ill go back to New Orleans.My greatest hearts desire is if I go back, I would like togo back with a degree in something dealing with thebody, so that Ill always be in the loop knowing whatsavailable for people not very much unlike myself.
I look forward to new relationships. I feel that where Iam right now is where God wants me to be. I expect todiscover a lot about Dallas. I guess the only thing Imreally afraid of is disappointing God at this point. But Imiss my city.
I know going home to the new place my mom has fixedup will make a difference because there will be somenormalcy. Therell be a routine between home health,my girlfriend, and my new friends.
I know that shes struggling, trying to find work now,whereas she had her own business, and she was prettymuch on the road to being self sufficient and indepen-dent. I see my mother aging very gracefully, but I seethe worry in her eyes. I know for certain that my momworries about whats going to go on with me. Shouldanything happen to her, what would happen with me,because my family is so spread out. Whereas, if wewere in New Orleans, all of those answers were self evi-dent. I see her exhausted, and it saddens me once againbecause she doesnt deserve it.
If I had to explain to the president what displaced, dis-abled New Orleanians need, what I would say is this: Ithink they need as much assistance as possible, because,if they were at home, theyre probably in nursing homesnow. And I promise you, its hell!
Lack of artistic talent should not be a burden. Ihave absolutely no artistic talent, but since I dontattempt to create art, I feel quite unburdened.However, I do have opinions about those people whoclaim to be artists and produce their mediocre work forpublic consumption. I must state my prejudices aboutwhat some refer to as modern art. This is one of themost misapplied terms in the English language.
I admire the work of the late nineteenth century Impres-sionists and a few borderline Expressionists. If possible,I would fill my home with works by Monet, Chagall,and Matisse; but I have not recently been fired from aWall Street firm and thus left with a few hundred mil-lion to spare for art investment. I especially love paint-ings by Van Gogh. Although he is cited by some as anartist whose insanity and use of booze and drugsexcused a lack of talent, that is not true. His talent wasextraordinary. Yet among the so-called ModernArtists the Impressionist Period was the last one inwhich intellect is reflected in most examples of the art.
In the art world of today, the word minimal in the labelminimal artist refers to the talent of the individual aswell as to the work he or she produces. I was trying torecover from learning that in the 1990s, someone paid$185,000 for three inflated basketballs in an empty fishaquarium, when I soon discovered equally hideousexamples of excess and madness attempting to pass forart. Last year Damien Hirst, who calls himself an artist,sold a diamond encrusted skull for $100,000,000. InSeptember of 2008 he sold a dead calf in a tank offormaldehyde for over $18,000,000. He also sold a jarcontaining a pickled fetal pig with wings attached for$800,000. In addition, sales of his spin art and wingsripped from butterflies garnered $200,000,000. Hirstsexploitation of potential collectors has passed thebounds of decency.
I understand that he is collaborating with Levi Strauss tocreate his own line of jeans and t-shirts. He is attacking
the very fiber (usually cotton) of the American West.Can we look forward to seeing real cowboys wearingtwo-hundred dollar jeans adorned with skulls, brightspots of color and butterflies? Will our youth wear his$80 t-shirts with the same motif? Does this Americanmaster of gore consider himself on a level with FreddyKruger from the film Nightmare on Elm Street?
A successful artist friend of mine summed up the situa-tion: All are familiar with the idea that mad artists cre-ate art, but we must recognize that there are also madpatrons of art. Another artist friend commented, I canbe cynical about the art industry, but I take art seriously.I realize this is a New York thing, but I do admireDamien Hirst for being able to get away with such aheist! I found it a very neo-Dadaist concept playedagainst speculative investors. Sadly, we need only watchthe news to see what fools are out there gambling insuch speculative investment. Guess I need to raise theprices on some of my art.
For those that feel that I, a nearly blind person,should not be judging the visual arts, Ill have youknow that I once had a brush with a famous artist andone of his works in progress. Thirty years ago at theFirst International Very Special Arts Festival, I wasassigned to photograph Andrew Wyeths less famousson Jamie. As I was doing my photographer moveswith my state-of-the-art 35mm camera blazing away,I backed into a work of art nearing completion. Thewet watercolor left an abstract pattern from the shoul-der to the elbow of my corduroy jacket. I quicklyturned to apologize to the artist and Andy Warholresponded, No problem, in his droll Andy Warholvoice. This encounter with a man whose approach tohis art I have always admired is a pleasant memory,but my close contact with Andy and his work wasbrief, and it ended when I took my corduroy coat can-vas to my dry cleaners.
by George Covington
Ahigh-achieving, take-charge mortgage banker forthree decades, Sandy Oliver today finds herbody, her speech, her stamina all struggling tokeep pace with a mind that is still more agile than most.You either accept it, she says slowly, her speechslurred and labored, or you become bitter.
For Sandy, the articulation of those eight words is clear-ly a chore, a physical exercise capped in the small victo-ry of realizing I understand her. But Sandy is nostranger to small victories these daysits been fiveyears since she was diagnosed with amyotrophic lateralsclerosis (ALS), more commonly known as LouGehrigs disease.
Even arriving a