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Rehabilitation Gazette (Vol. 23, 1980) - Polio Place

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I<br />

. .Rehabilitut ion <strong>Gazette</strong>/&o' -$<br />

-.<br />

International Joumal of dependknt Livlng for the Disabled


$g Wlth ths .7w,. sra "4 send all seal *I<br />

liso-arrmmlnS~~mdaddexnbldinllos<br />

me: &r~ tha lntonwdonal madurn. Wled PwW<br />

In!mlahd that


<strong>Vol</strong>vmeXXlll<br />

<strong>Rehabilitation</strong> <strong>Gazette</strong><br />

International Journal oflndependent Liuing for the Disabled<br />

~~h~bibt~ti~~<br />

-~{fomodyihe~aomeyj<br />

Greetiel has been p~bli~hedonceayrarince<br />

2 International Conference on Re~pl~tt'y Rehhbilitttionand<br />

PortPollo Agngboblems. October 1%1&17,1981<br />

1958 by avolunfeerruii iuaim ir to r-ch.<br />

toinfom, andfodlgnifydirabladm~li<br />

throughout theworld.<br />

Editom: Gini&Jce Laone lM?iouni<br />

Book Reul=wer: Joyce KniHan' iTe-I<br />

3 RpspiratoryRehabllltatiii i d Poet-Pollo Asins<br />

Problems. A spec8alfeature. Edited by GiniLoune. Comrnenb by<br />

lour Physicians *Her NBCls Pnma Time. Thore PassingYeur-I1 by<br />

Lany Schneider Age andthe Old<strong>Polio</strong>. Do the Vimiour FadeFiM?<br />

by Alice Maiihot. Ctisis: The Decisive Moment Turning Point by<br />

Thedo Carle. Themimsy of the Gads by Richard Jmkeia. Suruiv-<br />

Graphi-D-ipner:TedSmiih IMIiouril ing & Ii~ng ~ lPollo h by BWBanon. Advice foiPeopie With <strong>Polio</strong><br />

or Other Neuromuscular Dirorderr by Augusla Aiba, MDand Alce<br />

LLra3an: Mlrkie Marnn IMhau"1<br />

Nolan. R.N.<br />

P~o~ow~P~~:<br />

J O P L ~ U ~ ~ ~ M ~ ~ U ~ n ~ J PO~-P-IIO ~...tionnaiii<br />

PmoheademlConsultanII: Gay11 & A*<br />

HoHman, envLawton lMrrouril 13 Winnlngthe Real Wv by Womn W Friedmon<br />

Accauntmt: Doris Jon-* lMiii""1<br />

14 Do theDisabledHave theRighttt Adopt C h l l d m<br />

Denire J. Welsenbam. J.D.<br />

Legal Counarl: hllchaol Font IMurou~l 16 Independent Living: A3peciaI fefturhl<br />

Advisen: DonsBrennan'IOhioi.<br />

APhilorophical Faundamn far the independent Living Movement<br />

DI RonaldH. Donas lindiunal, Marion<br />

byJustinDan, Jr, YoshikoDart andPegNosek.<br />

Green= 1CailiomioI. KernMahan. Mic*i~<br />

Independence isan Amtude by WdDtio Coniey.<br />

MrGraw*. Judy RaymondiOhd<br />

comspondent.: Swan Armbrecht' IOhiol<br />

Nancy Cole'lHsaun). BobHib* 1OhioI.<br />

Carole Ann Parsom* iwtwonsini. Jsan<br />

Shnge' llliinoisl<br />

Independent Lifest~les A mecial feature<br />

Living Alone by RobenE. Hie We Balance Each Other by Dorothy<br />

Erich. College After 18 Working Years by JoanneL. Shirey The<br />

Dance GoeiOn by Elizabeth Tmistington Hisgins independence-<br />

On My OunTermr by MarJ Slarkiolf Skills far OtherThinss by<br />

Kent coswea Independence inaNursing Home by JimHaoper<br />

Intemanonal: Ronald J. Dch. irosonl.<br />

PiemeGan~py'lConadoI. Etich bell.<br />

liiushubul, DL Maao Nagai* 1JapanI. MadoNascimentoRro'<br />

(Bmnil. Josandiford<br />

(En~land). EileenVanAlbo**lMedroJ<br />

LDlmbled - ~<br />

COY-: E. Twistinson Higginr BO&h baUet<br />

teacher ~ifi.sthspolloiwhoivilliharethdr<br />

experisniesof 251 yeanoilMngMth mgmtorr<br />

at an intmanonalconiermcefo be held<br />

October 15~16~17 See pagej 2 and <strong>23</strong>.<br />

Donation per annual copy:<br />

$3.50 lrom dirabiedindividuals<br />

$6.00 horn ail nondiabled persons.<br />

profesnonali, and inrtihitionr. Exba<br />

conmbutionrare laxdeductible.<br />

PosfagoiHandlin~: Pleareadd75~ in<br />

the USA $1 outsade the USA.<br />

<strong>Rehabilitation</strong> Gazstttt<br />

Housing andHomeSeruicea- <strong>1980</strong> Supplement<br />

Rellgon. Religion and Rehabaitation by Reu. Roben J.<br />

Ronald. S.J.<br />

Disabled Peaples'lntemational<br />

<strong>1980</strong><br />

The <strong>Gazette</strong> Edlton' <strong>1980</strong> StudyTou.of Indepeodent<br />

Living I" €,,rape. Random Obremtionr and lrnpltcatians for the<br />

il S bu Gin! ondJaeLaurie.<br />

ARMS-SelfHelp MovementforMS People In Britain by<br />

John Sirnpkins<br />

Friends Amundtho World<br />

Booka byJwKniHen<br />

~qulpment by Jae Laurie. Handcycling AlenSy~terns. Meella<br />

neour Readers' [dear. Raplmtors. Shoes. Wheelchainand<br />

Accerror?es. Recent Pvbllcationr.<br />

Pamourn. U.S. PeriodlcalsuldNmlelizm.<br />

Watch Our Word.<br />

IYDP-AfRmation ofHum.nRlghb<br />

Available Bask lsruer<br />

ISSN #0361.4166


International Conference on Respiratory<br />

<strong>Rehabilitation</strong> and Post-<strong>Polio</strong> Aging Problems<br />

An historic synthesis of the ideas and experiences of<br />

poi10 survivors and other individuals with respiratory<br />

disability and their past and present caretakers<br />

Time & <strong>Place</strong>: The ihreo~day international conference<br />

will be held on October 15-16-17 at the Holiday Inn near<br />

the <strong>Rehabilitation</strong> institute of Chicago in Chicago. Ulinob<br />

remote conhoir, and other ieiated lhdurmes: 81 govem~<br />

ment ofScials: 91 third paw payers - eg. insurance:<br />

101 pmferrianai organktionr; 11) omanirationr of dlabied:<br />

121 quality aassurance omanl2ations: 131 Veterans<br />

Puxpwe: To better undasirmd PAST practices. which are Administation: 141 organizations providing dtematiuer to<br />

appropriate to PRESENT planning in order to permif home care: 151 independent living centers: 161 religious<br />

FUNRE danning. interests: 17) legal infer&: 181 iamuer.<br />

Planning Commltte: Don A. Olson. PhD. Director of<br />

Education and Training. RehabIItatian brtituto of Chicago<br />

and Associate Profwor Depamnents of Neuroiomi and<br />

<strong>Rehabilitation</strong> Medicine, Noithweitern Univerny Medical<br />

School. Allen I. Goldberg, M.D.. Med~cai Director. Divib<br />

rion of Respiratory Care. The Children's Memorial Horpi~<br />

tal. Eveline A.M. Faure. M.D., Depariment of hestheria.<br />

- -<br />

Laurie, editors. Rehabilitothn Gazelte.<br />

Partlcioants: A workha conference for 100~150. Evew<br />

one wiiibe expected to &nfnbufe acnvely - both invited<br />

guest pamcipana and tuition~paying obselven pai6cipation<br />

of the follow in^ . indivlduali and muor . will be rouaht<br />

~<br />

and welcomed: 11 medical team componenti hom the for<br />

mer polio centerr here and abroad: 2) medical team component$<br />

of the pieaont era hom rehabiiifation. ihtenslve<br />

care jpulmanolagira. anesthesioi~tr. PMRI. RN5. OTr,<br />

PTs. RTs. 5pe5pech therapists andnutAtimise, 3) rospIrabni<br />

olio wads who have been adve canfnbuion b rociehi<br />

;ince the epidemics of the 1950's: 41 rerpiratar-users with<br />

other disabilities such as muwuiar dyihophy, spinal cord<br />

Inium. . ,. amuotro~hic . iateral scleroiis. and children and adult<br />

survivam of inkve<br />

care; 51 po*~plior who are now<br />

experiencing problems ar the result o! aging: 61 voluntary<br />

organizations with concemr for the disabled<br />

71 manufacturers and dishlbubr, ai respiratory devices.<br />

2<br />

air with respimtow Insufficiency; 21 analyze and evaluate a<br />

major health care crisis and effectively ~ian actions to meet<br />

it 31 derig" a mulM~~"90nai a~mach to a healhh ore<br />

issue, utiiizing aU human terhnological and envlronmentai<br />

resources.<br />

~<br />

Alrn.: The coenfrc aims of the conference axe to demon-<br />

~ ~~~~~. ~<br />

shale: 11 the human bendik and cost eifectivenesr 01 han~<br />

sitionai and home care forrespiratoruserr: 21 the eflective~<br />

nesr of the medlinVrehabilitation team and the importance<br />

of includino the disabled individual a6 a member af the<br />

team: 31 the lifelong value of a cnting and monitoring re^<br />

@ma1 medical center; 41 ways of e!!ecting hanritian ham<br />

hospital to home either drectly or through a b-anritional<br />

fadiy: 51 ways of effecting adequate ruppoil for disableddirected<br />

anendant remcer: 61 the importance of inihict~<br />

inn - reinimtar-users . Ln eoui-nt . . owradon and maintznance:<br />

71 the value of a travelling equipment mrntenance<br />

program to ufe and economical home care: 81 roluhons to<br />

post-poao pr~b~em~<br />

Every individual. profesrional and disabled, and euery in-<br />

ILUtiO". organi2ation. agency or mmpany. both in the<br />

U.S. and abroad, interested in attending or sharing expoti~<br />

encer or conhlbuting a paper is invited to write for funher<br />

detaiir to Don A. Okon. Ph.D.. Director, Education and<br />

Training, Rehabllifation InstiNte of Chicago, 345 East<br />

Supetior Street. Chiago, illinois 60611. Phone: 13121<br />

649~6000.<br />

REHAB1LLTR710N GUEi7T


A Special Feature<br />

Respirato y <strong>Rehabilitation</strong><br />

and Post-<strong>Polio</strong> Aging Problems<br />

Edited by Gini Laurie<br />

In the last few years there ha been a growing awareneu who was on the program, &mated that more than<br />

by some of the medicai profession and people who are 250.000 people who are port-polio are approaching 40<br />

poit~alio that, when ~orr~ollo lioo~le amroach 40. they and should watch for anv alteration of muscle fundon.<br />

smck a responsive chord with many athen who are pmt~<br />

polio expe"encing similar physical limitations that are<br />

increasing with age.<br />

The problem received national 'N coverage by NBC on<br />

the "%me Time Saturday" program of July 5.<strong>1980</strong>. The<br />

pogram recalled the old days of polio epidomicr when<br />

polio struck 132.000 duling the pe& yew d 1952-54,<br />

paralyang half of them. it described the latent that<br />

are now showing up in about 50% of those who are now<br />

over 40. DL E.B. Dunlap. JE of W m Springs. Geo~a.<br />

- -<br />

, - C<br />

4 conference Planning Commiaee fI to rl Mamomr mmmer.<br />

Eurlrne AM Faurn M.D.. Akn I. Gddbem M D. Ghi Laune,<br />

Joe La"+. Don A Olson. Ph D.<br />

selves from imn lungs. As a rC$u1t, many have been under<br />

ventilated far yearn. yei they cannot bnng themselves to<br />

use a reioirator asain. Theu were condieanedto think of a<br />

respirator as a symbol of weaherr instead of a way to<br />

strength and good health.<br />

What are the solutions? They vary with each individual.<br />

Some have needed only h add rerting time to their sched~<br />

ule. Othen have changed hom clutches to wheelchairs<br />

Others have exchanged manual chairs for moioriled<br />

chairs Others have reumed using respiratoy aid or i"~<br />

creased the hours of their present aid.<br />

If you have doubts about the advantages of returningto<br />

or increaing rerDirafoty aid. iirten to w.3 Gaaerre readers<br />

share their positive experience3 and to the words of an<br />

English anaerthetirt who is Consuitant in Charge of a rerpiratoy<br />

unit and study carefully DZ ~ugurta ~iba's amcle<br />

that condudes this special feahrre.<br />

Sewmi yeom ago you ume in mpom lo my idterthm it<br />

miqhi be advirabfe la "bibs? iurther msoimtoni . . eauioment ..<br />

thereby increasing my energy lipuei Houeuer fmniinuedto<br />

push myreyondpmteried utii~ngfulther mspimmw m.tance<br />

it was o thmt m my independence. perhap 111 had<br />

YOleed mare c%%5wo"ce, such as o chat rerpirator I W"ld<br />

not have beomem derpe~l~phyrlmlly exhomted lhot I<br />

had to spend the summers 01 '78 and '79 m an intenrive<br />

mre unit in an imn l"nu!iluassoo",oIbmolhlmuM hod!"<br />

speak. I am no lonqer Mng the iron lung bur i find 1 rtilj<br />

needlhe chprt rwlmior msuwiementihr mrlino bedand


hemmeieoeiol~~nioioryeoyeoyeo~o. .CamieA.Pomns,<br />

5206 Tmjoigor Piam. Modtson. Wwcon9tn 53714.<br />

ease or anterior horn cell deienoration and that it ir<br />

frequently mistaken lor amyo%ophic lateral rcluoris. "A<br />

general pradtioner might leap to a dismal condusion and<br />

inou"~oBirdMork intemlMnUY doYsince<br />

my pneumonh *=re in 1971 it enables me to so longer<br />

lodh0"l yemng tired: at time* when i am tired I keepkeep me<br />

I,Dm our , , ", MD,<br />

put the part-polio through a lot of expensue anxlrty if not<br />

defied to tho pas&gity fhir mildu<br />

Theda bring up the important fact that rehabilitation ur<br />

D , , Nuciear ~ ~ ~ Medfc,ne, ~ Prerb,letio,~u n ,w<br />

pi ,i, OeSofa O.Ham nee, Pi&humh, Perm ryi<br />

uonb 152U.<br />

an ongotng process and people who were once rehabilitated<br />

need to be re~evaiuated and Iem new techniques to<br />

replace thore that no longer work Lam/ Schneider's<br />

thoughb parallel Thoda's. "As I have expnienced in my<br />

Eue,,,bdyi unzs defenomle he Qels<br />

in y0u,40sw~c0nm0t breothem .a, you in your<br />

205 11 you houe impaimenr 01 the muscb. the nomot<br />

41 years of polio, 31 is important that we go through a<br />

constant learning process of learning hest how lo apply<br />

oumeiver, keeping up~to~date on latat developments and<br />

rhonyer due to my* sure muhie.<br />

Thais uhu ,. thouoh - the numberoloeoole ,. . houino -. ooiio k<br />

new gadgets and appliancer that might arriit us."<br />

Thio roecial feature should not alarm uou but encouraoe<br />

901R4down,althemmetim.then"mbern~edlngbreathing you to ;eek adrnce and arnrtance if yau think you have<br />

oid ni niohl. *jno<br />

YO" can rraue ofthe neca,w o/-.!dng arri*nre with<br />

bnothi"~ d night by u ".new ojbicir The mod urebl b<br />

jmg breathing Ocher scmpie me,urer are not lo negien<br />

coughs and colds and ii you mn', 1rog brearh.. to use<br />

Dmiau. preuure . . .. G~O~BY r spencer MB. FFARCS.<br />

Cowui~nt. St Thomas' Horpild PhrppsRez~irntoni On*.<br />

South W&em Horpitoi London. SW 9<br />

Three post-polio people. Alice Mailhot Theda Carla,<br />

and Lam, Schneider emlared the ~rablem unth their<br />

Comments by Four Physicians<br />

After NBC's Prime Time<br />

Ann A. Bailey, M.D. ondE.R. Dunlap. Jr.,M.D.<br />

Rooseaen-Warm Springs Rehobilltation Center<br />

Worm Springs. Geolglo 31830:<br />

It has become apparent that rome preuious polio<br />

pdem iwe do not !",ow the penentqqe olIeded1 {ore<br />

strengfh rapidly dunng middie oge The muscles mast<br />

commonly offeded ore those that recavered well jmm the<br />

initid aaack and haue been used strenuously since. The<br />

majority of those letem receiued haue indimfed thfs<br />

"mysterious"presentaaon ojsymptom~ 111 pm-iue<br />

weoknes luifhiuifhoul . ooin ... 121 involvement of areor not<br />

premature aging symptoms. Go to your own docfor and<br />

show him this feature. He may wish to check some of the<br />

referenca given by Ake Mailhot or check your care with<br />

on. of the doctors who discuss the problem in ,hi3 leahire.<br />

If you want fhe name of a doctor in your area who has<br />

had expetience with polio or of a nearby iehabiittation<br />

center. send a stamped and ieiFaddiewed burinersnre<br />

envelope to the Rehobiiitotbn Gozette and requet enher<br />

the list of Ule area offices of Lliecare (each area oifice has<br />

one or two physicians on call. keeps a minimum of one<br />

iron iuno and one mckno bed in stock and is on call<br />

urged lo ouoid overuse Pain or o sense of muscle jdgue<br />

are indicdonr 01 ouewse and exercise should be drconlinued<br />

when eitherappeors. we haue aduisedon odequore<br />

but limited exercise regimen designed to mointoin thol<br />

rmngth in previously involved murcier and ouoid ouerlooding<br />

louerwercisej those muscles which previov.1y<br />

were not recognfzed as hauing been ojfeded Ponicipollon<br />

I" competitiue spo*, jogging and *nuour mlistheniw<br />

should be avoided.<br />

It is recommended that potientr who ore erperiencing<br />

sympmmr of increasing ,"eok,,e%S or musc1.z pain be ex omined to determine degree of impairment and have prescribed<br />

for them an lndiuiduailxed progmm oj actiuiU.<br />

Br~angorother~uppo* shouid be orcepkded asndedfo<br />

mointoln findion. We have recured o list 01 rehobiirtotion<br />

fac1fities where these services might be obtained. and sugqest<br />

Lhot one in "our uicinXu be contoded if need orises.<br />

previously recognized or being affected. The qqe ot which We will beglad toree os many potientr ot Worn, Springs ed<br />

was contmded seem3 to haue no relofhnrhlp with possible, but our stqff is rmaR ond the number which con<br />

* . . .<br />

time of onset ofsecandorv jars or with deoree oidimbilihr be served wili necerzariiv be llmited livou wbh lo be seen<br />

AllhauqhsVmplomr moyrerembiemoreseriou" disorden, here, please ask your iocai physicion to r*r you fo our<br />

rc.cn nc toe lo,. C.,nrl d he rr~J,cs do nc r re. 1-8, hr i.<br />

rr DIO~ inp ru rhc ~n.orro pn..


contan youforaddaionol informdon to obtain onsue- to<br />

future questions onceming the expected coume of the<br />

polio patient qneeded, ond will keep you informed ofdato<br />

obtained,<br />

D. Armln Flscher. MI). Chlrl. Pulmonary Servicr<br />

Honct," Lus Am,gas Horpitol<br />

6501 C. ImpedalHlua). Dnunry, Colif#~mlo90202:<br />

FollowingNBC'sPrime Time broodcast on July 5.<strong>1980</strong>,<br />

1 have receiued o onsrdemble number of leaem exprw~<br />

become prog-iuely disabled later in life TI seem. thol<br />

some patients have misinterpreted this os o posrible recur<br />

rence of pmgrmiue poiiomyeiitis infenion; others feared<br />

their increased murculo-rkeletol symptoms of pain and<br />

ureoknerr were same newly dlrrouend diseose pmcw. 1<br />

hope we con remure these people tho1 the pmgrerrion of<br />

disability is not due to o recunence of the poilo infedion.<br />

nor irpmgTession airnays to be expected<br />

The iong~term prognosis of polio survivan has been<br />

generony good, euen in thore pahen* requiring mechoni~<br />

cal breathingequipment. Howeuer, o declfne off"ndi0nol<br />

reserve due to oging or camplimting pmbiemr (such as<br />

ureight gain) may result in increareddkzbiiity luifh a 10s of<br />

some functions that were previously posibie. Thir is m e<br />

with oil chmnic disobiliN whether it be due to ~aiiomyeli"I<br />

or n L,L e. .kcl.!, , us J I en,* tll,lll,V(. 1, ,I (,!ICr


makethe pragiam "as mild ar possible" u, as not tooverly<br />

alarm any post-poiior. but as Mlh mart N we only listen<br />

with half an oar so there war some undue mxieQ.<br />

Of course we are all different, both in our polio involve^<br />

ment and personality ai weu as in our range d actidtier.<br />

Tho then medical director of Warm Spnngr told me about<br />

twenhl years ago, when I war working five or six days a<br />

week, that I should plan on spending every other Sunday<br />

in bed keeping very quiet and not even exert enough to<br />

tab to my family. Frankly, 1 never followed his advice but I<br />

can certainly see now haw important it is that we carefully<br />

pace ourielver and strike a happy medium in our daily<br />

lives. A sign I have now when I Oy to do taa much a that I<br />

begin to itutter - neither the doctor nor I can explain it.<br />

Address: Law Schneider. 811 Nonh LongfeUaw Ave~<br />

nur. Tucson. hona 85711<br />

Age and the Old <strong>Polio</strong><br />

Do the Virtuous Fade First?<br />

Alice Mrnilh~f<br />

Mlddle~aged old polior who feel that their ibength is declining<br />

even more precipitously than that of "normal" con^<br />

temp0ra"er may be righi.<br />

And it isn't their vices that are catching up with them. it's<br />

their vinuer. good oid~farhioned rehabilihti~e vimei:<br />

exercise, elfoil, and physical ach~evement<br />

Their condition - late-onset weaknesr from antenor<br />

hom ceil deteriomtion. wrtwlio weakneu rmdrome.<br />

p,,, 1" ""O,orrz.,,lrl.i.*~-,,:,l , ,,e ,~. tirid<br />

T.. lii,i.,"l1,i.11"1 \ >*I. p,,-,0


As Dr Maynard describer the cycle. "Peapin who have<br />

struggled to get back on their feet may have overdevel-<br />

oped and iheiied remaining normal muscle Losses of<br />

strength normal to aging can easily tip the balance Sterr<br />

caused by ovemse of remaining murcies aggmvater there<br />

changes."<br />

In Vle 40's and 50'3, when today's middle-aged post-<br />

polior were iccave.ng hom acute polio, rehabilitation<br />

rpeciaiirts - and %ends, relatives, inspirational miters.<br />

and everyone else in the worid - wgently advised he-<br />

quent and shenuow exercise.<br />

Penisfence in shenuour activity war the great rehabttl<br />

tive vinue and the pursuit of ambuiation seond oniy tothe<br />

quest for the Holy Graii. Anyone who daubled it could<br />

turn to the pager of such inqirational iiteiature as Rise UP<br />

ond Walk far resolution.<br />

Vigorous exerclre may 5611 be considered a rehahillktiue<br />

viriue by fnendr, relatives. and Vle rest of the world.<br />

<strong>Rehabilitation</strong> specialists have changed their minds.<br />

WHAT ARETHECHANCES7 DL Maynard rays that no one has<br />

done a good study of the frequency of Vlir problem. Now<br />

hat polio in preventable, he douhb that one dl bedone.<br />

He is interested in hearing hom persons who have this<br />

problem. however Mail rhouid he addrwred to him ar<br />

follows: Frederick Maynard, M.D.. kriitant Pmfe.ror of<br />

Physical Medicine and <strong>Rehabilitation</strong>. E31211 Universiy<br />

Hospital, Ann Arbor Michigan 48109.<br />

Copyright, Aitce Moiihol. <strong>1980</strong><br />

Alice Mailhot. 1632 Dvinth~ Ypsjtonll. Mfchlgan 4819197 "i hod<br />

polio in 1950. iuoFma"de~thertaafomighi~dddIIs,othfu,to<br />

enme inihr strenvouserer6on that would haueparne backon<br />

my leet Instead. f m~%sdjaur chtfdren. finkhed cotles. mt oi.<br />

mmter's in bummiism. and work as an odminamliue analyst in<br />

Drtmlt ntmg down "<br />

Ubliegrs~hy<br />

Mutder, D. W. Rarenbaurn. R.A.. Loylon. D 0.: LoBpmgwian<br />

01 pollorn~el~s or lome W e ALS. Mayo Ciin Pror 47: 756-<br />

761. 1972.<br />

CarnpbeR A, d oi me motor neuron degenembon fo,towmg<br />

p~Iiomyeliils Neurol 19 1101~1106. 1969<br />

MrComos Alan J: Momneurone degenemllon. Neurornu.cuiar<br />

Fundon and Dirordea Bunenuonh. 1977<br />

CRISIS: The Decisive Moment;<br />

Turning Point<br />

crisis under canto1 and quickly learned two leisons. You<br />

need ruppollive help, and it war out there waiting for me<br />

to fan the lire under it<br />

Several things happened at that time. I moved inlo a<br />

brand-new htgh-hse hw-cost housing for the senior citi~<br />

lens and disabled. There were 12 uniti for dinbied and 88<br />

for senior ci6renr. I soon dircov~red ihat it war not an<br />

aparhnent for a disabled. but it uros a diabling apartment<br />

Far six months I spent my time just ming to sulvive. but<br />

the following year brought much change. we have be lea^<br />

guered the ownerr to change some thing 1" the apart-<br />

WHAT CAN ONE DO FOR TP "I encourage there patients to ment; wme, I have simply done myseif. and some thing<br />

give in lo weakneis." Dr Maynard rays "A paran with are yet to be done. A more exciting facfai made me think<br />

this problem. lafe~onret weakness, should not do vigorour ihat I couid runnue, and that war that the inrtihite on<br />

exercise. He must protect hi5 murc1er horn ovem:' Aging. Unwersiy of Washinglo". received a rereach gmnt<br />

in concrete terms. this can mean an adjhent in iff=- to work in two buiidngr and their runoundfng neighborr*.<br />

A penan who has been ambulatan/ may need to use hoods. One war a ten-year old low-cost housing with 225<br />

a wheeich.4r A wheeich.r vrer may need to rely on bar apartments and our ~ix~month old budding.<br />

tev pawei A power chair user may need furlher adaptive Mort of the people in the dinbled apamnentr were<br />

equipment.<br />

close to, or over. 40. 1 quickly asked the lnstituh on Aging<br />

if they were aware that we were aging f.*er than the<br />

normal peopie were and could we be inciuded unth the<br />

over 65 in their project and the answer came back yes.<br />

Same of their conceL3tr are interntins and helnful. How<br />

is: a pubkc health n&, a sock1 worker, and ='health<br />

cansulhnt. i insist that they need an occupational therapist<br />

to heln bnns w . ihe oua1ihi . of life and mak chhanqer.<br />

irn ..ill.:~r~i.~-~~~ ,I . I.,.>WJ I I .I." ~i . . ~ r .!<br />

cur NorL , ,ti C I , i . i , . A*.<br />

r.' , 3-1. w r '"9 ~ .r#,?, 0 . r 1 > 'J" #., # w " J ! < .<br />

, . " J I . . . , 2 , . 5 i.:o.nr ,I, .. .n.,rr<br />

be.. . I. .,.,... ,I,. . r , : i < ..,..I. .,. i ,: I 1. 4, , g.<br />

',l".Jhin,?r,:1I1 1). 18.. i.2 e.." l.,, h,"r.,,


panel and what I said to open ths dbcussim was that the<br />

OT'S role har been to teach w skills which enable ur to The Whimsy of the Gods<br />

survive to the bat of our abiliw in daily liinng. What they<br />

don't do as well is to eanrlate those skills so that they will Richard Joekero<br />

work in the constantly changing and challenging world Old Sophocler knew about the relentless, sick humor of<br />

outride the Rehab Center<br />

As one gmws older it is natural that physical limitations<br />

the gads And lest we forget the gods keep remnding us.<br />

The double shoe. lifelong lake (we call it polio] has<br />

increase. With poiios. that proceir is weeded up. Far the lately been revealed to us. The first shoe killed or crippled<br />

medical proiewons, the care of the increased populationr us. Oh, but we who survived. erre eve red: we mihed our<br />

ated dehabilitatio; is an ongatng piocosr. Also if is difficult believing we had defeated the gods. Van?&. Vanity<br />

for people to understand that while some dour problemr Then the spititrhaneting remnd shoe dropped. graphi~<br />

are similar to those of the eldedv. ... oivchoiaslcaiiv . . we are<br />

younger My inter& and iferyle wdt be the same as<br />

call" remindinn ur mortals of our imwtence in the absurd<br />

schkme of things. I mge against the Lhimry of the gods. I<br />

those of someone twenty years older. even if our physical see the gods laughing riotously ar we d-ver that polio<br />

circumstancer are the same. has this comic residual effect. ra~ld detenoiation of muscle<br />

habtlaation. New electronic devices, new rehab fonceph<br />

and the changing 01 penona1 circumrtancer and capacities<br />

require conitant re~eaiuation d the porribllitier<br />

Dr Marcslle Dvnn~ng and Nora Wwd, who were the<br />

doctor and the occupational thempist at the Nonhwat<br />

Res~irator Center at the time of itr existence here, have<br />

of us. and she became aware that somethingwar amiss . . .<br />

poriibiy premature aging. She ii now ImMng at ur in a<br />

different light. Nora, as a dear inend and because we have<br />

beieagvered her so. is Oying to help. She has spent days<br />

soivinq some of our oioblemr, and she edited thir aficie.<br />

DL Dunning is locating other doctom in the area who are<br />

also concerned about these questions and ir gemng fed back from hem.<br />

It r an ongoing fight both wrth onereif to readjust. and<br />

the public to readjust we know we aie the guinea pig5 ar<br />

the first generation of polior to ~"M"M. iu* ar the senior<br />

ci&ens realin. they are guinea pigs as the fint large elderly<br />

population. I'm wing to look at this as a challenge. not a<br />

sadness.<br />

-~<br />

Thedo A. Carle. 2615 4th Auanue. Apt #602 Sde. Washington<br />

89121 ~n an ether hed do bur been o rrpimtow polto<br />

quad srince 1964 uhen she wos 24. She rpni 10 years in a<br />

hoiplmi in on inn lung then mouedintoihecommun~ with her<br />

,loo son3 Ale. they Fnlshed college she mmed heredurndon.<br />

chondngjmm fine arts m commercinl.rt ''Cm~ui~," she rays,<br />

"has mode ljfe roiemble "<br />

-<br />

been teaching for five yean and catching two a* three<br />

colds evev year Then I discovered the curative and p m~<br />

ventative oowers of Vitamin C. This revelation heed me<br />

, .<br />

cold or the flu in six years. I have only mised two days<br />

work because oi illness in there last nx yeam Tho exWn~<br />

ence onvinced me ihat I could ha".? more conho1 over mu<br />

health than I had ever dreamed. that 1 did not have to<br />

leave iiln-. life and death to be tallied by the hands of the<br />

fates.<br />

Then. about four years ago. I began to feel physically<br />

drained with each Unie effort to do anything. I thought that<br />

my days were limited. The winten were esponally difficult.<br />

I pondered over my Vitamin C experience and decided<br />

that if vitamin C could keep me hom catching colds, per<br />

haps other vitamins could help me with my fatigue problems<br />

So I began to rerearch and study numbon. I dir~<br />

covered that our faad supply rr woefviiy inadequate in<br />

vitamins and minerals due to depleted soiir and chemical<br />

fertili2ers So I put myself on. high nuhition program. Finf<br />

I cut out all the rugan I could hom my diet. stopped wing<br />

salt, avoided ar6ficial colo.ngs. additives, white flour otc. I<br />

also cut my meat consumption drastically and beganto eat<br />

more raw veyetabler and hits At the same time I began<br />

to take vitamins, minerals, and brewer's yeart My health<br />

and enersv . im~roved . dramaticallv. I lolled the fate for<br />

three years.<br />

I beieve that I have proionged my phrical *en* hr<br />

three years, that I have held back the ravager oi polids<br />

second anack for thir petiod. And it hlly gives one a positive<br />

feefino about oneself to know that one is doino what<br />

one can to stave off the rneultable.<br />

But it seem. ihat the fate have regrouped and have<br />

initiated a counterathck, far the fatigue has returned. I am<br />

WMILRAnON G iVmE


having rome difficulty plychologically accepting the n=w<br />

limitatianr beino imoo5ed an me.<br />

- .<br />

RichordJoskelo. who wos featuredon the cover ofthe 1974bue<br />

1 . 1. 1 11.. , , ra ' l. ,: .,r*,O..'S<br />

~e.8 .nor.?<br />

Surviving & Living With <strong>Polio</strong><br />

Bill Born"<br />

Born in 1939. 1 had a normal. active. happy childhood. I<br />

had the love of my mom, dad and nrter and I WK blessed<br />

with the deiire and drive to learn about myself and tho<br />

world around me. Approaching adolescence. I war begin^<br />

ning to know myrelf and to understand my world with<br />

clarity and confidence.<br />

Then in 1951, my being war smashed by polio. Within<br />

two days I war in an iron lung unth only a minor m a<br />

mange world. Numb with fear, I watched the nu- and<br />

doctors make their anempt to keep me alive and salvage<br />

all they could from the disease and aU I could move was<br />

my neck to him my head.<br />

Sunnving the sicknerr. I war moved from LC5 Angeler<br />

Countv General to Rancho Los Amioor for rehabilitation.<br />

~.<br />

progress. MY prychoiogist'theie described me ii one re^<br />

port as a "hightened, terrified child." Maybe K a result of<br />

thir ieai I managed to get hee of the rewiraior and I<br />

regained rome movement in my arms and leg. Although<br />

doomed to remain a quadnp1emc in a wheelchair and<br />

backbmce the reit of my liie, I war sent home in a year<br />

coming home, I war totally dependent on my family for<br />

runnval. Their devotion ha3 made it porrible far me to<br />

have a relatively good life over the yearn. Far a few years I<br />

received physical therapy hom my sister, a pmferrlanal<br />

therapin who came to the house, and a rhon stay at the<br />

Kabot~Kaiser lnstih~te. A relatively active life has also<br />

helued me reqain rame movement Homo teachern helped<br />

.- ~<br />

own determination, on the undying devotion oi my par^<br />

en*, on a power wheelchdr on rome dwndable young<br />

men and women at rchoal. on fundins horn the state and<br />

Mom took her o m life. Dad retired hom work ar a ma^<br />

chinist and continued to devote his life to helping me. I<br />

learned to drive a car very weU wilh special foot controls.<br />

About 1973 my business showed a net profit af around<br />

$2000 for tho you, and I lost all of my welfare. racial<br />

security and Medicare benefit2 a3 a resuit. seeing a need<br />

for more income. I became a realtor in 1975. I then in-<br />

. , h "<br />

5,,'',52 8,. > ,,, I ' #.",I<br />

< d , . , , , ,,


Advice for People with <strong>Polio</strong> or Ither Neuromuscular Disorders<br />

Au~".,. Alha. MI,. .,,dl\liro N.lla.. W.Y.<br />

,, . ,. ', ,,%, .I, ,KT... ?,,,<br />

\. . .L .P 8 . I... ,.: l.... ".a, 8, .,.. i... r 1111 811.1<br />

10<br />

mere "our remiration and should not be taken. espenaliy<br />

at orduring the night.<br />

Far many people, the hrit changes may be difficulty<br />

raising secretions and feeling congerted with frequent<br />

colds. Difficulty rairing recrenanr leads to a sealing off of<br />

lung tisue hom the aiwayr ialelecfasisi. or to infections ol<br />

the I""* tisue iwi4rnwi4ii!. Th% wwo rk! bresthing be^<br />

~~ ~ ~~ ~ -<br />

If you have any of the dgnr and rymptam desccibed<br />

above, you rhould make an appolnrment to see your doc^<br />

tor Your breathing can be evaluated by simple t&. One<br />

. ~<br />

carer they are rubfle. You can easily recognize weakness if<br />

of there is measuring your uitd rapacity iihe maximum<br />

of air that can be moved into the iungr and then<br />

forcibly exhaled). If your vital capanty ir reduced but is rbli<br />

you cannot pick your head up of1 tho bed, mire your 3"s above 50% of a predicted "due for your age and sex if is<br />

above your shoulden, tum over In bed by yoursell. come unlikely that your symptoms are related to your diminished<br />

to a ~itdng position or ilt independently without a back breathing capaciu except in throe situationi: marked obesuppan.<br />

However. it 15 di!hcult to recagnile when the mur~ sity, pad ob&%n of lhie throat during the night I"<br />

cler of respiration (the murcier and rib rage that expand sleep, and the presence of an inhinslc lung direare ruch ar<br />

and canxact your iungr) are nnl working adeiluahly, an old tuberculosis or emphysema. If your docmr cannd-<br />

When these muscles are impdred . reshictive respiratory en it necesray he we1 refer you to a p"hon3y rpecialirt<br />

problem resulk. This k different from obrfivctive pulmo~ The pulmonary speclabit unll do screening pulmana~<br />

nary problems or disorders ol the always.<br />

function terb. mare omprehonrive pulmonary hnc6on<br />

111 (1. - ,~\.,oi -I I.,, 8;m g, 1h.r ILI~;,~. Jcn.%' *ill tests if he hndz them ne-ary, and arterial blood gases.<br />

h


WINNING THE REAL WAR<br />

It is a war about whether there is any value. any dignihi.<br />

any rand* to human life.<br />

Of all the wars chat have plagued this planef Lhk 13 ihe<br />

only real war And it has been going on re1entler.1y in he<br />

minds and heark of men and women, generation after<br />

generation.<br />

It has never been reiolved.<br />

All othe, wan waged between people5 and nations over<br />

ideolo51. teniton/. conhn1 of the mean5 of pmdudon or<br />

wealth - even the wan fought over relL@on, heedom.<br />

tyranny - are but reflections and shadows of this real war<br />

There a no peace an earth because there is no univerral<br />

goad will toward human life.<br />

once, we had a larger world and time to avoid or ipore<br />

the fundamental irrue. of the real war But dirtance and<br />

time are no longer with ur. Our wienre and technologier<br />

have neubalized our old auies. NOW. ulih the ap of a<br />

switch or the push of a bunon, we can lniult and rage at<br />

each other at the speed of light; now our clenched kts can<br />

reach auois continents. delivering Aw~megafan wallops.<br />

Now we confront each other and thur we now rnnfront<br />

by Warren W Friedman<br />

But on the other hand, to man" . other oeaoleandtome ..<br />

David was a liKle bay -a little boy who certainly suffered<br />

severe disabilitier, but neverihelw a liftle boy who<br />

had a happy disposition. an almost magical smk, a delightful<br />

laugh a little boy who felt win and ~harure. who<br />

and more ofrrmggle. to use a rpmn. to play the gamer of<br />

"peek-a-bw" and "paw-cake." To the people and to<br />

me, David war not lust a congenib1 rrabrtic - he war also<br />

his fatheir ion. a member of the human race. a chlld of<br />

God. and David's life - his LIFE - deierved reipec~ng<br />

and presDwing and enhancing.<br />

Haw could one little boy's lik be viewed so differenfly?<br />

Why did some people recoil from David in honor, or ra<br />

tionalize their neglect or indifference toward him, oi aban-<br />

don interest in him on the ground that he warrevereiy and<br />

permanently disabled? Why did other people keep on m~<br />

ing and caring for him, and devote rubrtantiai time and<br />

offon and energy to help him m spite of and because d his<br />

dirabiiities?<br />

O.F.~.!.: I.8."~1" maic , en,< ?.. :, i ,pr,, . i ,K-5 ,d! , v",*,.\ ,,ci,, ,r\* ,,#,?')V". r , 8 I i 1 . , , 2 , T1,,>1l 1..411 n. 1,111. I,,. L, ?, Jez,, J


LoaWny back now, I see that ham the vey beginning, then attempt to focus rationality upon iheli and see the<br />

David was like a minor: he reflected you back at yourseit result. The result is a circular epiriemological, metaphysical<br />

Thot is what made the meat difierence in the way peapie mer.<br />

reacted and related to him. onlu if vou first beiieued in the ~ecaurewe foioet thatwemurtfim beiteve in rationalik<br />

-.<br />

It ir pan of the human condition that belief in the value, applications. And thur we continue to make the colorial<br />

dipityand ranctiu of human life must be learned by us. It mistake we humans have been m&ng for thousands of<br />

h not bam or built Into our minds and bee*, nor does it yoair. rue iotionolize and obiedify eoch orher's iiues.<br />

spring magically into existence lor us when and ii we need If ure *re to win the real war on tho slde of<br />

it. Such belief mud be taught to ur by our feuow human human life, we must finally reconcile ow belief in mbonal-<br />

beings and. in this sense alone. we are inexorably bound ity unth a belief in the sand* of human life We must<br />

to each other, inevitably inferde~endsnr We wlil 6nd no iecomize that our tendencv to obiectih, each other onlv<br />

-.<br />

sa"ctity of human life. must come first - without that pmmay belief, all other<br />

Unfonunately. it is moil farhlonabie today to ndicule beliefs become meanlnylw or derhuctive.<br />

belief as being irrational or emotional. Belief doer not admit<br />

to scientific proof. The blumph of rationaliv is so per<br />

In a world of increasing rahanahtionr and 50-called<br />

'~bjeduity' - a world of aholdon for convenience. lack oi<br />

varlve in our modem world that we have a tendencytoday senritivityto human iufledng, indifferenceto renselers uo~ to deem our rational relve as more "human" than our hence. fafalism in the face of loornino mass desrmction -<br />

$ 8 o.,<br />

h.."..', n,nir. Irn?... I . .I,. I ,118 .1,5..*1-,..> ..I' ha ..I,, ,I,.. , l,,, l,, I.,,, I,,., If, -I,. i ,,,,.,( 4.. 5,"<br />

\l>~k#n. 'I * !. ,? .i 3. ,. ;* ,v,> ~, : ih.l, ,b.< :! Jt.7 .,08!\.< .,. .h<br />

. t 2 . i h .14


III..I., 111 ,I,, ,I. I... r.\n,,r .1,r.. r


Independent Living: A Special Feature<br />

A Philosophical Foundation for the<br />

lndependent Living Movement<br />

by Justin Dart, Jr, Yashiko Dart ond Peg Nosek<br />

A considerable amount of time and money is cumenfly Unlike most other minotitier which enjoy geo~<br />

being invested in independent living prole&. This logical graphical. cultural, racial, physical and communicative<br />

out~rowth of the dirabilihi doh* movement holds the bonds that dve them oreater oatenbal to obtain a share<br />

",.... ,< "I ,#C.,,!, v.. 8.t. "3 . c 8. N.. !""kc. ,rc. IPW~.. '.v".:" !W!"..>7,%1 '8 J. the r,.<br />

1.: "I i.r.0, n n m,,. 0, in.', oL.a, i llri 1..,cin 3, c *< a,< ('8 . >I.\ . r ~IL..,: n. en~<br />

which convey "belonging." power and prerdge. dent Illling piogmJnr drinrly the summer 0,<strong>1980</strong>


onment and the social conhal mechanisms in society-at- for an inflexible adherence to cerbin nymhlr. mathads.<br />

large,'" reflectr, in our opinion. a step forward, a normal deenfti~ni and atuations that may far prerent<br />

development in an increasingly rophiiticatod awareness of<br />

environment, a soit of adolescent protest in fhe pioces of<br />

a humanity rmggling toward aduithaod. Thisamhide isan<br />

understandable reaction to certain aspects of the social<br />

system and ib physical piaducr, which had previously<br />

a facade of lhving independendy Th. dogmatic thrusting<br />

oi oxoenrive. oorriblv . . unra&hiino and often unreachable<br />

goair on ,I i, mi. .I" in. 1 . I.,... u ..'i . .(. .<br />

,r dortitnn.~nt~~r.~ I:,. .k, 3s, '. 88 .!c . ?.rSoJ%!.o tn.,<br />

. , , . . I I! 2, " 1 :I .>I. I ,I( 2: i I I : m.. ..<br />

been accepted as natural conditions, hut which are now hinod, or cannot be maintained without the maians of<br />

perceived ar ~niurticer. We feel thaf a more mature mow self~defeating racnfices, the" waste, iruroation and unnecment,<br />

one capable of effecting the changes net- to essary sub,ugation to authoriw, and perccptlons of a lower<br />

the achievement of its bener malr. will forus on the reaiity<br />

that the Individual is in one vital sense (in terms of his own<br />

perceptions1 the whole of his environment and, at the<br />

overall quality of life reult Instead of becomins lncrearsame<br />

time, an intqal pall of an immense cause and effect<br />

unity involving the self, society and the universe. which he<br />

. .<br />

tiveiy tuifilling and recure "primitive" culhire in order to<br />

can control only rkghtly. It would then be understood that acquire certain material andprychorocial ~ymbals of modit<br />

is more ~ractical for the ~ndRndual to view himself as emirm which are trequenfiy beyond his or her grasp, and<br />

being the lwus of both the problem and the rolution - are allen impractical andlor unratlbing when acquired.<br />

became he is, within the reality of hi% own conrclour universe,<br />

the onl" one who can initiate chanqe . or wrceivo ie The ~Ianninq and weration of mectfic. effective inde~<br />

~<br />

reiu1ts.<br />

Therefore. the ultimate ma1 01 indenendent livinq - and<br />

.. .<br />

physical and rocioeconamic independence: he or she will<br />

become, in a very real senre. "independent"<br />

In pursuing this goal. If will be essential Lo loam to measure<br />

success in independent living in terms that are relevant to<br />

the ~ar6culai sualihi af life rihla6on ai each individual No<br />

- -<br />

desirable ifate of "independenci ar "quality of life."<br />

Surely the achievement of ruch goals constituter an im-<br />

provement over the reality of iablessness and institutional<br />

or homebound living ior many perronr. However, ior<br />

some individuair. an imtitutional or familycare semngwith<br />

a significanny increased ability to conhol hi5 or her own<br />

existence and perceptionr can be conrldeied a ruccessful<br />

result of independent livi"9 haining and sewices Helping<br />

ce*ain people develop an expanded concept of self and<br />

the assenivenerr and confidence to make new derisions<br />

within the limitr of their given supponsyrtem can be con-<br />

sidered a more succeslul reruit than placing them in a<br />

more "independent' remng. We must not<br />

make the mistake of racnflcing control and qua1iw of life<br />

'Gerben Dalong, 73. Mouemenl jor independent iiuing<br />

Ongins. Ideology ondlm~l~monrforDisabr!~q R-rch IEM<br />

Lamring: The Univerriy Centerr lorlntsmationai R~habiliiation.<br />

Michigan Sbte UniuenW, March 1. 19791, p. 60M1.<br />

achieved by Lhe doliven/ of conain solvices in pattlcular<br />

ways. fine. But we must maintain an open mindednerr and<br />

a flexibility which will allow us to make conmbuhons whlch<br />

are he most appropriate in view of changing circum-<br />

stances and the needs of diiierent indivldualr. And we<br />

must take swcial pains to ensure that we do not succumb<br />

10 the traditional maladies of reformen who have enjoyed<br />

initial ruccesr. If we yield to the temptation to simply place<br />

our leaderr in position5 of power and prenge previously<br />

held by able~bodied persons, to replace one pat~mallitic<br />

rehabilitation bureaucracy with another which will set up<br />

inrbtutianalized forms to oiovide housins. iabr, atlendan*<br />

. . . .<br />

magnificent potential. and we will have conmbuted not<br />

much that ir profoundly new<br />

Funding and adminlrhatiue probiemr present another<br />

challenge to the Srmness of our philorophical foundations.<br />

Mort indeoendent livino oroaram manaoen suooe* a ool-<br />

recommend devoting a ruhrfantial Pmpoionof resources<br />

personal and financial - to the conrmction dthe me<br />

of broad. stable multi~rouice funding base which would<br />

aiiow maxima1 philorophlcal and adminirtrative lndepen~<br />

dence. We agree, and would add that a program should be<br />

sturnred and budgeted in ruch a way thaf it is not nocer~<br />

sary to dedicate excessive amountr of psr;onne1 time and<br />

money to the direct and indirect requiremenir of outside<br />

funding. and that it can SuMve almost any perid of cur^<br />

tailed or terminated hmding. pubhc andior governmental<br />

I7


disapproval, operating on a minimum bar13 dth donations<br />

of time, material and fund! by staff persons. ciientr and<br />

advocacy group members The currently farhionable ar-<br />

rumption that a project which doe not receive outside<br />

funding cannot be nnrted oi maintained is devastating. It<br />

parses efiective cone01 of the pramam and the movement<br />

to outride. generally establishment rourcer. We feel that<br />

it ia naive to expect the ehbiirhment to uoiunteer per<br />

manent financing for rlgniiicanl arrau1ll on concepe and<br />

6huchlres which are foundational to its power and per<br />

ceptions of preshye - and that funding cuts would be<br />

especially tempting if it seemed probable that such actions<br />

would cause the termination of pamcuiady threatening<br />

pmmams or fhe dissolution of certain activist giaups.<br />

We also recommend that the independent iiving or advo-<br />

cacy program reserve its vely mode* r-urcer for inveit-<br />

ment in actiuitie which conmbute maximally to the rur<br />

viva1 of the movement. such ar advocacy, information and<br />

referral and. perhaps mort impo*nt the delively of<br />

indeprndenf living sewices - eipecially independent liu<br />

ing skills ualniny - to those who have the potential to<br />

become membem of an effective leadership core, which<br />

wouid form the foundation afa rhonger movement able to<br />

take advanlage of the apporhrnities fhat probably dl<br />

come.<br />

People today are faced with dangers reru1tiny from eco~<br />

logical. technological and psychosocial mismanagement<br />

which threaten a new dark age of starvation, sickness, pov<br />

e* and technology powered barbarity, or even the im-<br />

mediate extinction of life on the planet. We are, on the<br />

other hand, challenged by an wportuniw, an apparent<br />

potential to use the bert modem conceWonr of moralify.<br />

philorophy and science to iulfill, even to exceed our fond^<br />

ert dreams of an earthly existence chsractenaed by democ~<br />

racy. jurtlce and physical and psychological quality of life.<br />

Now in the iart yean of the hventieth centuw we, the<br />

disabled. perhapi the wadd'r largest and mart severely<br />

disadvantaged "minotiw," have the godlike opporhrniv<br />

not only to take effective conhnl of our own liver. hut to<br />

arrirt In the birth of a new phase 01 humanihl: life~ouaii~<br />

sponsible for life. to max+nke qualify of bfe for theseliand<br />

society<br />

Note: This artlcie is a sy"opri3 ai a iarwruork by ha authon on<br />

independant living phiimophy and rrmflipr oi indeoenden~ lime<br />

centers whlch will be published dunng the comb9 year by he<br />

independent Uving Rrxarch UdKiUon Pmisrt, Houron, Texar.<br />

The research reiened lo abovowar sponsored by MIGM! 51, hr<br />

dirabiiini nghb advocacy olganliatinn in Austin. Texas<br />

Independence is an Attitude<br />

I once wrote an artid< lor the Rehobifitdon Goeeite<br />

119771 on women and dirabiitier. In the amcie i talked<br />

about my disabiliv being only a part of me and that I am<br />

many things to many people. I want to~ursue thaithouqht<br />

and expioie rt a little iurther<br />

Today, independence ii the goal to shive for for many<br />

people with disabilities. Indo~endence in thouqht and in<br />

action. I maiize now that it ir ramefhing I have been sinv<br />

in9 for all my life and am continuing to shive for I am in a<br />

wheelchair and there are things I cannot do for myreli<br />

Thls is hue of many, many people Yet we all can be<br />

independent because it is an atiltude we pmres lnde~<br />

pendence ir not doing for yourself nec-nly but having<br />

IS<br />

the abilih/ to conmi your life by choosing the options that<br />

are available to ail of us.<br />

happens we can cope if we remember to explore the op~ tione auailable.<br />

Being disabled ir only a pan of us. There are other sides<br />

of us to develop: ar there rides mow they on be ured in<br />

our shiving for independence. Let me use an example<br />

Suppose you are in a nursing home. Your day may consin<br />

of gemng up in the morning, eating breakfast, watching<br />

N, eating lunch. doing some a* and crafts. eating dinner<br />

REWBILlrAnON G MmE


and watching more 'N until it is time for bed. Along with risk-taivng side, your ahiii~ to relats to others to amain<br />

thin are intermiwant visits to the doctor or rehab fadlitv , "our . ooal. - Then vou can look back and see what vou did.<br />

How can we make this a more inferertinq and indepen- and if there war anything you would do differently, and<br />

.ll.il ,.,.n. (4, 1. .:..,,,.. I,,, r , ,, 1.". ,I' Il >dl grn* 5o*, r ,I,<br />

%iVI~,IJ ~??;.,,IB ,t.r ,z ,rr.t8As .( ,,..ihm, j.8 ... I,<br />

Cr'nGricr 1I.r ,r. 11 11, r o lo ~ ;..I 'I.I.., u. ...lnj L ,(I 8. is .I rr~n ..uo~c ,( , d ,,D . : +


That condition wastheresult of Matie-SrmmpeUarthrW<br />

and the rwere pain of that disease diminished when complete<br />

rigidity had developed.<br />

Later, rheumatoid arthdB developed and caused much<br />

deformation in shoulder girdle and feet x, that th~re is<br />

debilitatinq . ~ain . if the veidcal ori it ion ir mdntained for too<br />

long a time.<br />

That definer the problem. Let's sit down and think<br />

about it noilr. can't do that YO" d have to lie down.<br />

my need.<br />

During my fatheir rho13 illness the MD urged me to<br />

have a home health aide helo me with run care M ce a<br />

week x, that problem was solved before I was compietely<br />

0" my awn.<br />

Lakewood has an Office on Adnq that doer wonderful<br />

, .<br />

group. They bting a hot meal In a three~divislon aluminum<br />

hay at noon five days a week. At the same time they leave<br />

a old supper that may consist of a sandwich or other cold<br />

main coune with ,ello. huit or a home baked goodie hr<br />

derren.<br />

Nutritional balance is carefuUy planned but I like to add<br />

exha vegetable or hit as the whim and my digextion dictate<br />

Weekends I have a chance ta cook the old favorites<br />

that I miss otherunre.<br />

That is a good time to ark someone to oaf with me but I<br />

can put the planned meal on wheels aside and go into my<br />

short order cooking routine dunng the week if someone<br />

seems willing LO join me.<br />

My next&door neighbor is retired and he har been meat<br />

about coming in early ea~h morning to help me dress. take<br />

out garbage or any ather task that needs affention before<br />

we have coffee and whatwer together If Gur can't set<br />

here, hir ran. 801, substitutes. They keep my yard neat too.<br />

Without Mends. my problems would be greatiy in^<br />

creased. Very often I ask someone to pick up &a item<br />

fiom the rtore or to reach mmefhing that has been stored<br />

where I can't reach it or romething that ha5 been dropped.<br />

A wire man once fold me that the best way to make a<br />

Mend is to ark a favor He must betight because I have lots<br />

of friends.<br />

My church hiends see that a lot of us who cannot anend<br />

seMce. get o%tte taper of the whole thing duting the<br />

20<br />

following week. We not only hear the sermon and music<br />

but the announcement. and tho babies wing at baptism.<br />

etc. Of course this is more personal and more ratisbing<br />

than a radio or N program.<br />

Among my friends I must mention my barber, dentist,<br />

internist and podiahist who routinely work on me at home<br />

at considerable inconvenience to them. Each ofthers men<br />

makes me feel that he ii happy to help me and that it is no<br />

trouble at all.<br />

My inend and oral surgeon warned about my falling<br />

when I was alone so we put our heads hgether and came<br />

"D with a ratatin4 bem riL?na1 . li~ht . mounted on the hont<br />

of my houre and aduated by a Genie garage dwr opener<br />

switch which 1 caw with me. and the signal receiver and<br />

a hanrfomrei mounted on the hont wall af the uorirn<br />

bedroom.<br />

One touch of the budon in my pocket will turn on the<br />

red lioht and dart the beam rotatino to amact anention.<br />

~ ~ ~ of t the ~ light ~ i war ~ t i ~ ~ n has a p~pe<br />

thread fildng in ib bare by which it k alkched to the<br />

conduit thramh whlch the wire hue1 to tho hant wall of<br />

the houre. The uies enter the house through awatemrmf<br />

work box and enter a transformer which reducex the 110~<br />

volt houre current to the 24 valtr necersaw , to owmie . the<br />

light. Also mounted on that wall ir the advator unit oi the<br />

Gerue gamge door opener When my portable activator<br />

switch is touched a radio iional is emiiied. This rimal is<br />

rr..ll.cL I,. ,I,Cu; L7: ub:nr.. ,rr.r iiir all.. I A*<br />

,,",,. ,or, r l ~ uceo e aicndJ. ,Ir nc...,~~ q o! ~nc<br />

I 11, 2, .J A


Nothing i. perfect I am thinking about wayr to make<br />

storage facilities more accesible to me. I hope to make<br />

rooms more comfomble and useful to me, too.<br />

I am thinking hard of wayr to reanange a very small<br />

kitchen. To wre the iehigerator a foot above the Bmr to<br />

make all shelves more accesible is an easy change but<br />

finding space for an eye level oven has me stuck for the<br />

moment I haven't slven . up .. vet because I iik La bake.<br />

I ldld I: L "in c rmr,


home to give me treatments as well as exercige my legs<br />

until I war able to walk. I was also able to team to ua an<br />

am to feed. clothe, and bathe myreif.<br />

I war taught hom grades one through SIX by ham=^<br />

bound teacheri. I war never inside a public shoo1 until<br />

feel worthwhile.<br />

m e n there writs rmpped becaure of the teachex's rud~<br />

den death. it war not until my junior year of high school<br />

that homebound inshuaor took me into a public<br />

school ciarrrnom. By that time, classes were connected to<br />

an intercom. a system made possible by the iocai school<br />

dirhict. Each of my four classes ham Reading Htgh School<br />

was unred by the telephone mmpany from the ciariroom<br />

to my room at home.<br />

During my senior year in 1960. my homebound inrhuc~<br />

tor raw to it that I gat toreo my high school faotbaii team<br />

in adon in addition to ths. he stopped far me very early<br />

one morning, loaded my wheelchair in his car and off I<br />

went to school lor an entire day. The whole purpose of thir<br />

day war to meet my lour teacherr ar well as pan of my<br />

senior class with whom I wr to maduaie in June. 1961.<br />

was hauing too much fun.<br />

On the day that John Glenn orbited the earth lorthe Bm<br />

time. the Bureau of Vocational Rehabditanan IBVRI sent<br />

me to the Univerrity of Pcnnrylvania to be evaiualed lor<br />

higher education. AHer an extensive day of ter~ determining<br />

what I could and ould not do. then going through a<br />

prychological examination, the results became very dear<br />

- no colleges were accessible enough lor me. Further<br />

more. 1 wasn't able e get on and ofl a bus myreif and. in<br />

the eyes of BVR. thir completeiy disquaiffied me I had<br />

looked forward to going to college so much that this wm a<br />

tenibie blow<br />

My mother wanted to go into the card and gift shop<br />

businerr and she $It celvlin that there would he enough<br />

work fo keen me occuoied. The thouoht of becomino a<br />

. -<br />

there war nothing ieH to do but help my moth^<br />

er So for eighteen years I ran a carh register, stocked<br />

meetino cards and did same of the baokkaeoin~ for mv<br />

l thought that l c<br />

huriness ~~~ ~ when<br />

discontented and there was hiction bemen my mother<br />

and me. There war a rrmggle going on inside of me because<br />

i truly wanted to be a writer A quest lor more in^<br />

dependence grew and in 1976. 1 had brain rurgely to<br />

improve my coordination. It failed. My recovery took an<br />

entire year, efter which I went back to the card and gift<br />

22<br />

shop. The lack a1 part-opeiative care led to hequent hard<br />

falls an my left hip. ArthriLret in in my hlp. also affecting<br />

the sciatir nerve. Ths cauzed so rrluch pa,,, that , now<br />

muit wear a nelve stimulator to conhoi the inteniiQ oi the<br />

pain.<br />

Finally, after hearing about the Handicapped SOMC~O<br />

Oifice at Reading Area Community College. I itartled my<br />

mother one day by saying, "Mom. I'm going hack to<br />

rchoai." Her firit concern war lor my health because lor a<br />

long time my health war vely unpredictabie. I assured her<br />

that I undemtood her feelings Neverthsleri, I had iiiile to<br />

lore by hylng.<br />

College war now posible to anend becaure of vans<br />

equipped for whorlchain. These are prodded by the local<br />

bus company. I recall one maming when it was mowing.<br />

cauang winard ~h~ bus company<br />

called me to make cemin I war going. To their rumnre<br />

I said. "YES." It war the lad dav oi the term and I had<br />

an exam.<br />

Many changer have been made for the good of all dir~<br />

abled Derroni. No lon~or ihauld anv vocational rehabiittation<br />

bureau stop a dGbied person tram going to huher<br />

education or bener ~abs A disabled person can be exsctiy<br />

the person that heirhe wants to be. Linw are now made to<br />

prevent discrimination again* the disabled person. no<br />

obligation ller not with the parents nor wlih ~ubiic omcialr.<br />

but with the disabled penon. It taker time, work. determination<br />

and a faith that disabled perions were put here for a<br />

ream". peopie have a pU-s or goal in hie. 1 hmb<br />

believe that it is a murtio make the m-called "able~badied"<br />

people aware that disabled persons eve,yhere have<br />

obligationr to live liver hrii of dignity and wholenes far the<br />

good of ail creation.<br />

Address: Joanne L. Shirey, 173 West Oley Street. read^<br />

ing, Pennsylvania 19601.<br />

The Dance Goes On<br />

Elikabeth Twirtlngton Higgins. England's most illusfnour<br />

disabled person. is a talented amrt ballet teacher and cho~<br />

reagiapher. She psintr with the brush held behveen her<br />

teeth and a breath~ope~aied eaal. She dances through her<br />

pupilj. The Chelmrhrd Dancerr. who have performed li~<br />

fuglcal ballet at St Paulr Cathedral and Weshninrter<br />

Cathedral. She teaches bailer unUi help from a remote^<br />

~~~troiied tape recoider and a portable voice ampiiher<br />

Before pdo in 1953 left her a rerrpimmni quad. she<br />

war hained in ballet at the Sadlen Wells Theah-e School<br />

and parred her teaching exam at the Royal Academy of<br />

Dancino.<br />

After many yearr of being shunted fiom harpitd to hor<br />

pital, with short stays at heiparents' home or in a rendential<br />

home, she achieved a rewlai income ar a member of


clrcan brother who was a ~aiainfer He had heaid of a hbh<br />

painted and studied for elghhf or nine yisn and had averal<br />

ruccerrfui one-man rhawr In St Louis, hut did not gen~<br />

erate much income.<br />

Peopie were condescending. men they found out that<br />

I painted by holding the brush hemeen my teeth. they<br />

would ray. "It is wonderful that you have something to<br />

do." Few took me ietiaurly. They were more interested<br />

in the method than whether I was good or not I avoided<br />

the mouth and foot painting organlrations and sought out<br />

foendships with non~dmbled artlrb. I did eveqthmgpoisi~<br />

hle to avoid any contact with disabled people oi with any<br />

diiahiiiiy-related issues.<br />

The public attitude toward me because of my dirabil~<br />

iiy bothered me so much that in 1968 1 coniacted some<br />

inends to see if they could guide me in voicing my feelings<br />

about being panonlred and the general problem of people<br />

not taking me renousiy. I wanted the appormniw fa state<br />

publicly my feelings and be given a chance for my work to<br />

be accepted on metit alone, iater that year I met a younq ~.<br />

lady who came to work at the nuring home Far nine<br />

yeam I avoided any romantic relationships hecam of the<br />

fear of being reiected. but this ladv war quite aqmerriue<br />

and gave me no excure for backulg out. She mide me<br />

realize that my Chahility need not get in my way,<br />

This reiationrhip started my thinking about my iuiwe<br />

and wh&a I wanted to mend the ret of my life in a<br />

nursing home. I had joined the Manner after high xhool<br />

and did not begin college until I war out of the service.<br />

When I had my accident I had completed only one year of<br />

college. At this time in my life I had very litile work ewe,+<br />

ence. I viewed this lack of experience and education ar a<br />

I talked to proferrionai people, a congressman, and<br />

some friends and hom tho= converutioni, we developed<br />

an exceilent and well-rounded board of diiecton to cany<br />

out my plans. We incornorated ar Paraquad. Inc. At the<br />

same lime we rtarted a local chapter of the National Par*<br />

plegia Foundation, so that I could begin to understand<br />

other disabled people, how they live and what I could<br />

leam from each of them.<br />

in 1973. when I war in California for a mcatian. i wm<br />

abied penon who war so knowledgeable about d~rahiliiy<br />

isrues around the country I talkedto John about my pians.<br />

He war polite but said they did not do things that way in<br />

Calihmia. The CU concept is one oiintegration and "tilil<br />

21<br />

ins existing renice. in the communih/ CfL rtayed in the<br />

hack of my mind hut 1 rhl1 wanted to punue mu danr<br />

~ ~<br />

the nursing home. She became exrremely inkrated and<br />

involved in me and in what I war doing and we started<br />

dating almoit immediately. Aft- a IilUe over a year we<br />

began talking about gefting manied, but were not Rnan~<br />

cially able to do so.<br />

Meanwhile. Paraquad applied to foundations and to<br />

vmationai rehabstdon for funding Finally, some loun~<br />

dation monies came through for a direchr's salary and<br />

we became engaged on the Fourth of July, 1975, on the<br />

Lautiel' "lucky lovexat" We wao married in October of<br />

that year Along with meeting Colleen and visiting CiL in<br />

1973, 1 alro started attending national meetings and had<br />

the opportuni~ to meet nationally lolo- leaden with<br />

oncepe diffeting hom mine. Some penonr who had an<br />

impan on me were - Fred Fay, Eunice Fiorifo. Jim<br />

Jeifen. Ed Rabelu and others. My original plans<br />

irom segregated to integrated houing and i naturally<br />

nowed into the ~hilosoohu . .. of the Center for fndeoendent<br />

Living,<br />

I realld that iiving in the communiiy with the arrirrance<br />

of indellendent livinq services war the wav . to om - Mu . feelings<br />

wire confirmed-when I nitended rev em^ meetings on<br />

independent living in different ares of the caun~. Another<br />

major hrce in my change of thinking came from my<br />

mendship mth Gini butis and Metening to her philarophy.<br />

The years 1977 to 1979 were traumatic and enlghtenin-<br />

for me. I had rumew for decuhiti and i broke mu leo so<br />

. .<br />

I ,i*!l,, I,.,.:,,


1979. 1 war very lortunate fa be picked to bea chairperson<br />

of the workshop on funding at the Arlington meeting It<br />

war reasrutino - to rii and talk with ~aoole to haw what ~ ~ ~~ ~ . ~~. ~.<br />

others around the counhy were doing. if built my confi<br />

to purchase reMcer bom the centers. Andher is to de~<br />

velop ptivate business venturas which are needed in the<br />

communiW and can Bnancbllv benefit the center As the<br />

philanthropic dollar becomer tougher and tougher to .r<br />

dence to know that we wen on the tight hack with the<br />

develooment of an indeoendent ~.~ ljvino service rvrtem in ~<br />

St. Louis.<br />

Because I had helped with he Wting of the wlatians,<br />

I had an advaniaae - with our state vocational rehabilitation<br />

agency when they were awarded a Tile VII grant in 1979.<br />

quire. it becomer mare important to develop a board that<br />

will be able to raise moneu and to oenerate hinds to at least<br />

meet the general operating budget<br />

Paraquad offers about <strong>23</strong> core rervlcei thmugh our<br />

indeoendent livino -. oromam. - Mort are the haditional<br />

independent Lving non~reridential reMcer which have de~<br />

We were relened a$ a rub-conaador by Missoun Vocs- wloped horn the Berkeley concept of independent living.<br />

tianal ~ehabilitation, which enabled us to b-me one of in many rerpeca the population we serve is not what we<br />

the original ten RSAh~nded indeoondenf ilvins center.. had exoeded. We serve those who have cerebral ndrv.<br />

We received approval for a threeyear grant in Gpfember who are deaf. spinal cord injured, thore with head


Borbom Roehm. C5~6 quod since 1964 ol oge 20, luok ar<br />

o mmpuiei pmmnmme./ona1yli for Fomland 1"d"dndn. She<br />

dnma lih~equfpr~d mn and liver alone, luith herrhieeuuoeten-<br />

Slomere block cot Tahlbo. Shedings in her rhunzh chojr and b<br />

0d"S 0" nslona1 rommi- for rehobtrodon ond accenible<br />

~rnnspomjon. Alter hitid hentment mthe U. of ~<br />

p~foirhe ~hirnedto herporene'home infndependenn.<br />

i H-- ~<br />

, . , , ,<br />

I , :,: . - llmihIormyselfbecau~iddddt bbI~wjn them . . ihow lokeep<br />

Skills for Other Things<br />

by Kent Caswell<br />

Oi"4 to mahe thi"~ beer I'm the go-get~'em, deuiitakr-,hehindmort<br />

luire." Address <strong>23</strong>11 Smndh Drive K~lll. Kanm<br />

when a little cerebmi palsy child r in school for eighteen<br />

vears he thinks that school ir his life place When he getr<br />

~oi~owing ichaoi. ind~vidua~r can<br />

getwen/ goad jobs. Some woikaf workhoprwhirh are hr<br />

outofrchool. hemyhtgotocollegewithoutreally iearning the disabled and retarded people. Not all cerebrd palsy<br />

about the outslde world. He might feel ar though he needs induidualr, including me. poseass skills far that work, but<br />

somothinq mare &an iurt an education: he mav hide hom we have rinlls far other thinor.<br />

hc- hiend; because hi feels such l~elingrolreif doubt are One thing that CP'S fami;= find drihcult to 8%<br />

not for men. So, he holdithere feelingrinride undl he gets when two CP'r think about gemng mamed. Families may<br />

sick. feel that it lwkr bad to their friends andreiativer. ud Ihoro<br />

or week or can be purchased.<br />

At one point in the movie, "Some of the Time." I a y<br />

that education in college kn't everything in the wodd. A<br />

man may think that he should work all his lhfe until he can't<br />

keep on going any more because his health can', take tt.<br />

but I think if ir time for both young and old to take it easy.<br />

Our bodies and minds can't keep going forever ike they<br />

did when we were younger So take it eary. like in "Good<br />

Life." We can talk, walk with somebody, relax and enjoy<br />

,ifo<br />

When I rtaned whooi. I didn't know how to read, write.<br />

use the word board or use the typewriter but aner one<br />

year of reai hard work with the teachers. I could use the<br />

ward boaid by summer vacation.<br />

26<br />

. .<br />

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.~',I ..n,!i 2 I -


Independence in a Nursing Home<br />

Jim Hoopei war feahlred in the 1975 <strong>Gazette</strong> when he<br />

and three &ends engineered an eleclric typewriter and<br />

push button rwich his is a bulb which is also piaced in bed<br />

at "ight berhde h ~ foot. i It work. For N, he must be<br />

assorted remotely conhalied items that he could owraie hrrned around to owrate all the huaonr with his foot lor<br />

with his nghr foot. Jim. who is disabled by cerebral pal%<br />

was then able to communicate unfh the hnen word for<br />

the remote control of hi new Zenith.<br />

"Hi ready rm1le and laugh keep him in good graces of<br />

the nnt time in his 37 yea. Afkr his mother died, Jim and<br />

his father moved into a mobile home which they equipped<br />

with a lie. Recently. Jlm'r father wrote that he now writfor<br />

Jim because he cannot hrpe any more ar hir "foot<br />

misbehaves" and hli R~mich sfnp plinfer is not sutted for<br />

lehe-bng.<br />

the aides and nurses. They all like him. Hls care is so<br />

different hom that of the usual reiidenli of the home.<br />

I,:-.: ...I.... ri.. .I J IIL,.., ,,I. ,..:,I.., ,or:, "I,,.<br />

I - , 'W....".? .>,.ipn.,:., ,


Tha Fedeni lax crethtol $25.WO lor mmanngarrh~te~hml and<br />

tranrpo*tion barnem horn busin- 1aciwe lvar ~nended to<br />

J~~~~~ I, 1983 FOT deudi, one* your local IRS oihce<br />

Asseuibilihl. Sbnda.de<br />

?he ANSI 5mdard. A1171<strong>1980</strong> Amenmn Notional smn~<br />

dm, Spenfi,*~n, fD'Malons Buildings and F~~ilitier Accessible<br />

toandusable byPhyiimfl~Hondim~pedPeople, iravaliable ina<br />

va*,.,o< WYS ,I/ singlo C* hce - wt,k bh-y i* - born<br />

Residenfr comrninee an Employment of rho Handimppd.<br />

1111 20th Street. NW Warhingmn. DC 20036 121 Bngls copies<br />

lor $2 from non~rofit gmup organbtions, drvlbled pemni and<br />

moupr hom National Center far a Barnerrre= Endmnmenl<br />

Suite 1006. 1140 Connechcut Auenua. NW Washington. DC<br />

20036: 131 ringle copies for $5 plus 52 rhippmg hom American<br />

A Gulde lo Derlgnfng Ar-lble Ouldoor Renw6on Focilitb.<br />

Amadivelu , aressnfed . and UrnIratad 58 oanes. . " Exlenrivr hlblim ~u<br />

nphv includes h'vmric nter w wan ar awlde u-"i of recmtian<br />

iacaties s!ngip copies free from H S ~ ~ conssmtion<br />

W and<br />

N.~o~.I standard. Inmbie. IQ?~I B~o.~w~Y. N ~ YO*. W NY<br />

Inn18 - ~ ~ ~ -<br />

0-ip ~O,ACC-~~~W, a ~ a v e ~ i intern,& ~ ~ ~ thanw h ~ , ANSI<br />

Recreation SeMce. MO G Street. NW Washington, DC 20243. standard, sxplaini fodml law, and 5- the nead for unilar<br />

mil!, in coder and wdad0"r. 1,- king rhounat convsntionr 01<br />

GuidetaSp~~mtio~olDoorContmlsfaiB~m'm'm'Fre~Enu~on- bade araciationr, rehabilitation alganhtionr, etc. For dataih<br />

F R ~ ~ ~ ~ R ~ ~ ~ ~ ~ to ~xia ~ M C D ~ U ~ Q N ~ ~ ~ O . I -sa~ ~ B~ I c sociew ~ zon ~ , R<br />

~ylvania 1756% Wart Ogden Avenue. Chicago. Illinois 60612.<br />

Housing AdombioW Guidelines. A roncapf m make d housing Mnimum Guideliner ond RequiremenLs far Ac-lble Dengn.<br />

accaible. Peopier Houung. Inc. 1424 Old Tom% Caoy~ 52 parps. Osuded -!hcs propmod !or oikdeml commcSm or<br />

Road. Topan*. C~ilifomia 90290, prows that 1004, 01 all rehabilitation. Free ham Charles Gdman. Ganenl Counwl.<br />

multi~lamily unit be earlly acrmsrible in terms of enmi and circu- Archilectunl and Tranwrt*hon Barnerr Compliance Board.<br />

latian and beadaptable lhrnughrninormn~vationiandaddin~~~ Wwhingtan. DC 20202<br />

The 21~ge booUel ii available horn Peo~lopl. Houring. We rerommend<br />

this concoptrnth enthusiasm! Barnmoms<br />

Making Public Buildlngr Ac-ible m the Handtaped More<br />

Borhmom Deignsfarthe Disahiedand AbleBodjed. By Hanne<br />

Rarmurwn, dslger lor the Danish 6m. Danrk P-alt AiS.<br />

Can Be Done The 43-mg~ rewn by the General Accounting Aurmrlenbolggade 11~13. PO. Box 188. DKBll Aarhus C. la<br />

O~ceisalollw~upoIa1975rludykhcl~-m~on% praduchinrludeadj~&%harharharharhh~~~ndddt.,wt.h~<br />

to avoid confurion among fedaial agenclrr F~ce ringie mpie. and raised toilet =ah. Available in the US. horn Jrclo. Inc.. 162<br />

horn U.S. Genenl Accounting Olhm DlrmbutionS~ction. Roam<br />

1518,441 G Sheet NW Whrhmg+on. DC20548. Ask lor Repn<br />

No FPCD-80-51. June 6. <strong>1980</strong><br />

Carlton Avenue. BrooWyn. Nwi Yoth liZ05.<br />

Horns C.re Suonort<br />

~ - - --.- ~ ~<br />

The PaloSwluorr Founda6on. 8913 La Enhada Auenuz. W%R-<br />

Tho Nation4 Center In. Banieni Frae Environment ha. inswed<br />

a tou-free honine m make a~llabk information on arresribili~<br />

and bamer-hee deiqn. The Accerr Information Lino number s<br />

1~8W-42&2RW.<br />

der, Calilomla 90605, rrivorUngunth stakand ounu olfltiakta<br />

set up a caiiiornia ~ealth care TN~ lorsu~~von of s.vcro and<br />

CatarVoohic . Phvrlml . lmmlnnent to administer direct smB La<br />

aHected eAm.%," ?, (',>1?.3 a, l...n, I..,<br />

man 5,. '1.0.. ., id. u.. I. .'.


Oher sour- of inlomation on indopendent umg whichshould<br />

be checked for their latest publicationr.<br />

.LeMnwn Pollq Ihnituk. Bmnde. Unlvelri* Walham,<br />

M.ss.churetk 021%.<br />

.Independent UMng PIO,DC&. Room 3216. Mary E. Swikai<br />

Building, <strong>Rehabilitation</strong> SennrerAdmlnblra"on, Oflice of Eduiation<br />

and Rehabilitative Semi-. Washingion. DC 20202<br />

.Office of lndepcndeni Llvlng lor the Dkabled. R m 9106,<br />

U.S. Depalbment alHou.ng<br />

ton, DC 2M10.<br />

and Urban D~velopmeni. Waihing~<br />

era c. I* t, 81.. ta..~. 1 ll..l,, n.' nq . u J L* I<br />

T. .I u ..' N.C;..L ir .I I 8.r < b.?.,, Cnrmw?n..<br />

I4c:u.l .~,~R.II." r...,C-rnnaol r,. i! ..,<br />

2 I .r a I... .. Yrr..!. 11).1,311 LIIv~. -41 dl II<br />

lhl .". I,. ,<br />

hnd- and Atlendan* A Guidebuok of Heinfil Hina By<br />

Alhed H. De GmK This rompreheMue 38-pge guidabmk b'<br />

umnen by a C-5 who sham hi3 awn expe,iEncu and t hm 01<br />

oihen whom he has know through h. work ar diractor 01 D.~<br />

abled Student SeMce! at Boston UnlvrmiQ. $4horn ths Collage<br />

and Uniwolty P.rn0nn.i Asdalion. suile 120. 11 Dupont<br />

Circle. Washington, DC 20036.<br />

The Awndant Manogemem Manual. By hueily Junm a rtaH<br />

member of tho Wahfnston Coallbon ol Clbrenr Ulh Diiabilitier<br />

- . .- ~.<br />

ing postage ham Tho Washingion Cmlihon of Cltilem vrith D>rabllihoi.<br />

<strong>23</strong>66 Easdaka venue h i Room 206 seanls. wash^<br />

. .<br />

atakr uhkh expand the range 01 home-based and rommun,ry<br />

allematiua, such ar home health ieMcoi and adult care centem.<br />

S 2809. The Nonmmbhltional Care for the Elderly and D'lrabled<br />

Ad, known as Tilie XVI, would pro*de a fixed numbprof hami<br />

health. molte, or adulf dav rare wits to benaflnatier of Mad#care.<br />

~dditi0"~1 ul.* would be rublecl Lo an income-related co~ payment Theseudnareo~tianal, and the recglanawould haus<br />

a chaic. of ladlitier - home-based care or nurring homer. Tho<br />

lairlation would also provide asxrsmant of tha rcripient and a<br />

$100 tax credit for lamilier who carelordep=ndanLelderly in ,hair<br />

homer.<br />

HR 3990. <strong>1980</strong> Medicare hendmenb Bill indude uanous<br />

home careprovmonr, including unlimifmd home health-8b wih<br />

a fhrer~dw pnar hospllalvabon requiremsnt.<br />

Tnnsllional Trends<br />

The adaphtion of a few eursng apamene or homer for hanri~<br />

aon to independent 1ivlngir anewnamk.1 .ndsnnbleapproarh<br />

that should br watched and rbldlad FoUounng ue a law exam^<br />

&5, We wmld w ehe defarlr m more for publication in the<br />

ne* irrue.<br />

The Adulf Independent. Dwelopment Center 2275 South<br />

Basom Avenue. Campbell. Caiifomia 95WR. war a-ded<br />

$100.000 in Community Block Grant hvelopment Fun* to<br />

purchase kuo borne! lor use as mniitional lhving cantor% The<br />

llnt home. whrh opened in Sopternher <strong>1980</strong>. acrommdale!rix<br />

lndmdualr<br />

Tha English Chehire midentiad home concept is being med in a<br />

lew 1mtioni in Calihmja. The adaptad vpnion is a rmal, rented<br />

home, Mth redcar, for no more than h e veaople Information<br />

lrom Cheshire Home!. P 0. Box 1334. Santa Cm. California<br />

95061.<br />

The ind~~endent 1ilnng centor in Nebraska. Whuhrh "as funded in<br />

October <strong>1980</strong>. plans to leare four to sk acamnentr and maim<br />

,..,.,.,.- 8, .,"A-..,,.., ,Y'A.,,... V..,' ,. ,,., ,,,,,,,, ,<br />

I.," ....I., . L' 1. .' .. ,1 . br. \., , e. * ,, '.. 0.8<br />

A , :,.rii,, I,><br />

c . " : , , . " I . . .<br />

I 8, > \.,...,,,.. 1.<br />

Lautie horn the wntings 01 readen who are quad"p1wc. dial, or<br />

blind. this ir a vniqup diihllanon spanning 30 yean ol expenence<br />

It li dellghtluUy illurmteduilh mnmnr by a quadclpls@r.<br />

Accessible Space. Inc. a non-pmUt olgankation, has built fiuz<br />

Bob Tanmn. t $4.95 including pa*ge. Rehoblltohon Gue*.<br />

4502 Maniiand Avenue, St LOU^. Miyoun 63108.<br />

Eualudon Repon on fhe Sfask Indewdent Liuing Censn<br />

- - . ~<br />

milker rewlca. A iypical noor plan has lhmr reriden, hadraomr.<br />

a rarml" room-dmmq room. fachen and (bath on each sTda ofthe<br />

Funded by ABZ04: Flnoi Repon By Suran Staldard. Fran Kat unit. plur an atbndant bedroom, laundN sea bath and sn~ rumnii. Llnda Tow and Dan Fmnwn. March <strong>1980</strong>. IndMdud lar red caun ~eueiopmentand consrmction are ~ ~ by . ~<br />

rmlei ol the report are available horn Re!earch section. Callfoi a loan hom HUD undn itr Smcllm 202 ~mgram. Mare mlama<br />

nia ~ s~mnent of ~ehabditation. 830 K Snsnb~~. ~ ~ Bon framSteve ~ Wlgginr. ~ HealkhCenml. ~ Inc. ~ 281057th Ruenu.. ~ t<br />

Califomia 95814.<br />

<strong>1980</strong>NOLUME XXlll<br />

Nonh. Minnra~alar. Minnriota 55430


Religion and <strong>Rehabilitation</strong><br />

As a Christian I believe that God made the Bible a nch<br />

treasury of advice and canrolation for the rick and the<br />

disabled. The pumore of this paper, however, is not to<br />

present this matend, but to extol the role in rehabstahon<br />

of religious faith and practice regardless of creed. 1 rhail ty<br />

to do so in a way that also includes the non-Christian<br />

tradition$.<br />

ME ROLE N REHABILITRT1ON OF PERSONAL RELlGlOUS<br />

BELiEF From my experience both ar a diabied pemn and<br />

as a rehabiiitator I have observed several indispenrible<br />

conditions for rehabstation ruccerr. that is. for the sur<br />

cessfd reurn of a disabled person ia useful, meaningful.<br />

satisfying life within the ~ommunity<br />

1. An effective level of iundon and rhength with skills<br />

or the ability to acquire skills.<br />

2. The availability of medical keaimenl and wen/ Wnd<br />

of necesray service and equipment.<br />

3. An accessible environment.<br />

4. Oppa?tunities for mobiiiN and woik<br />

5. The disabled oerson'i own determination and<br />

by Rev. Robert J. Ronald, S.J.<br />

forcemenh One's irfe & reem suddenly out of reach,<br />

There seems nothing ahead but hushation and kiiure. na<br />

positive ielnforcemenb to oncowage one. nothing of value<br />

to cling h. Mental as well as physical rehabilitation k<br />

needed. Before one can commit oneself to rehabilitation.<br />

one needs a meanmgtul goal in life with the expectation<br />

that it is mainable. othonvire there is to live for<br />

no reason to ty io move ar improve. Releaus belids aro<br />

shon~ incenhves at such times of crirb.<br />

. . - ..<br />

adjurment beliefs can restore to a disabled person the renre of per<br />

sonal worth. No maner how others may laugh at my plod^<br />

The flrrt four conditions for the most "art are bevond a dino offom. I am not afraid to out mv hand m God's and<br />

drrabied peison.r immediate cunho~, I& gmd un~i<br />

cannot restore permanent deficiencie. and gwd intentions<br />

can be thwarted by lack of ieources and sociew'r u nd~<br />

ingnesr to accepl or accommodate. Still by far the most<br />

impomnt factor is the Bfkh condition. Really determined<br />

iand capable) wrronr sometimes compensate in remaik~<br />

able ways lor even the severest limitations while noUling<br />

can help a penon who has given up. The main rnneibn-<br />

tion of personal religious belid ir here in the area of<br />

acceptance and adjusrment<br />

1 will divurs the role of faith in the context of several<br />

conceots rherred bv DI Julia" Ronei who in his Saial<br />

hold my head high and to ihabihte mysell.<br />

Expectofians: Life is wonh lid= becaus~ God dues it<br />

even with all its difficulties and will reward it Faith offers<br />

not just a denouement of peace and ultimate heedom<br />

horn pain and effort, it promirer help and canrolation in<br />

the prerent. For rome perions life may indeed hold the<br />

hope of divine intervention to cute or I-n infirmitier. For<br />

all who belieue. there Is fhe pomii of n~ Wing aban-<br />

doned, of being glven help to penevere and the hope of<br />

daily peace of heart and coniolation. Accepting dirabilily<br />

doer not mean liking it. It MU always be trouble. Acceptance<br />

is the determination tom on livin~ with it in rolte of<br />

levels of value or desirabsy, some having pwtity over<br />

others. One shives towacd a gooal only to the extentthere u<br />

a reasonable expectation a can be reached. Satisfaction to<br />

~hn;tianshave iheaddedconmlation oiarunenny Chnst<br />

and the hope that ondi oum heti tins are somehow in<br />

union with the cras ar reflected inthore mystenour wards<br />

be had at the end of a coum of adan or at least rome of St. Paul. "I rejoice now in the ruffenngi I bear for your<br />

ratiriyiny reward while an adon is in process reinforcer sake; and what Is lacking of the suflenngs d Chnit I fill up<br />

the penon's offom. while unpleasant rerulti tend to bnng in my ilerh for his body which is the Church:' [Col 1,241<br />

those effom to a halt.<br />

Diabllik erpecially sudden unexpected diiabiliy, drr~<br />

And again, "Gladly thetehre I uill glow in my lnfirmiaes<br />

. . . for when I am weak, fh=n I am 3-." ill Car. 12,<br />

rup~ the balance of needs. value, expectationr and rein- 9-10]<br />

30 REW8ILTIAIION W E -


Not theSubsrilulian ojHeouenjoiEarth: A life d Faith is<br />

not just the gmng 01 one's teeth and beating whatever<br />

comer or lying backto wait for heaven to come. This eanh<br />

is where God expects us to prove ourseiver. We are ex<br />

pectsd not merely to believe. but to live a life of faith, to<br />

go on rtnving to do good no maaer what the circum-<br />

stances. I have to rehabilitate myself and do my beri to<br />

serve God. do good to others and develop my Gad~given<br />

talents Religious beliefs ranctiiy and support ail the goals<br />

of rehabilitation.<br />

Not Futulism: RoRer alin talks about the concepts of<br />

. .<br />

eflortr required to change their environment or adapt to it<br />

so they can reach the goals they re! for themselves. Eaer-<br />

nallv controlled neoole, on the other hand, believe lhev<br />

drawing near the goals they stnve far whereas for the<br />

externally conholled it. in tho possesing or enjoying of<br />

things which brings reilef R-ea~rh has shown that many<br />

alcohalicr and drug addicts feel exfemaliy conholled. Re<br />

search has also shorn hat the internally mnholled m/<br />

harder and mare succesfully in rehabilitation.<br />

There appears sometimer an apparent conOict betwen<br />

reltgiour belief and internal conhai. if dirabiiiw is taken ar<br />

predestined fate or ar punishment for sin, then one should<br />

neither oppose it nor mi to remove it. Thus in some mental<br />

religons rehabilitation has initially been met unth ~ndif~<br />

ference or frowned upon as interienng in Go#r plans.<br />

I for one. however do not believe such Fatalism is an<br />

accurate itemretation of divine will. The word of God<br />

mu* be peridnai~y accepted, thus belief is an act of inter^<br />

nal contiol. Faith may provide the meaning and direction<br />

to iile. even set down the oath to lollow. but the individual<br />

has the responribility io a& and co~ply. Even if one's<br />

religious ideal in withdrawal hom the world and contemolahon<br />

of the rublime, it takes revere dirnoline and self-<br />

- . . .<br />

does not excuse hom the duy ol doing good. Srmggls is<br />

often a palt of moving toward God who does not demand<br />

what we have not bur lvllu exoecb enan with what we<br />

<strong>1980</strong>NOLM WUll<br />

aspect.. Thore is no jumping up and down with joy<br />

"Look. Ma, I can still use one hmdl" There ir oniy the<br />

derpainng, "GO away. I can't waikllny more. vm ureleir.<br />

r1l never do asaln what I did before. Nobodv can love me<br />

I, .in I . ,< . 1" 8 I ... I,, ,<br />

.<br />

,<br />

. . i, ,I I, "i ., ,.b,<br />

c , . L .<br />

mention away lrom self.<br />

I.,. I<br />

I<br />

,.to,.<br />

A < 1.11 .n,, rr, ,I,, '.<br />

. \ . . 8.' - ,'I. L li .:<br />

A person who prays. oven if it is only a plea for death.<br />

Is lakina a Rist sten toward rehabilitation. A ~erson who<br />

,..I..'., in.. .,a,.. .I n >sr. .I .r. ; I.,..:.,, r .",h<br />

8 8 3, ',t..#> ...r.-ll,od\\#clt# III~.<br />

ti.. .,?-..I I,.,, ,1. 0.r


Ounng the World Congress of <strong>Rehabilitation</strong> intemationai<br />

in Winnipeg, Canada. m June <strong>1980</strong>, abd 3W dsabied<br />

delegates and a lew nondiiabied coniretier from amund<br />

the world met and took steps h form a warldude caalbtioflon<br />

of persons with all types of diabilltier. (The Rehobflitation<br />

Gozetle editmi. Gini and Joe Lautie, were enthuriartic<br />

oalticioantr.1 . .<br />

The meetings of the disabled dologates were oichesmit~<br />

ed by an diance of Canadian organizatians d tho dic<br />

abled. the Coalition of Provincial Olganizationr of tha<br />

Handicapped ICOPOHI. The fin! meeting appOnfed a<br />

revenmember committee of delegates from canada.<br />

Costa Rica. India, Japan. Sweden and Zimbabwe, chaired<br />

by Henw Ennr oi Winnipeg. The committee drafted a<br />

proposal which war unanimou.iy accepted at the recand<br />

meeting. The delegates then elected a lourteen-member<br />

steering Cammiitee with hvo repr=entativer each hom<br />

Asia. Europe, Latin Ametica. Afdca. Nollh America. Middle<br />

East and Oceania.<br />

MEMBERSHlP The coalition is open to all organi2ationr OF<br />

disabled people. that Is, organizations in which a maionhi<br />

of the governing board or council as well ar general mom^<br />

henhip is dkabled. either physically or mentai1y. in the<br />

case of the deveiopmentaily diiabled, it would alra include<br />

parents or other advocates.<br />

The words "disabled" and "handicappe#' are "S4d i"~<br />

terchangeably though each har a different empharir. "Dir-<br />

abled" refers to the physical or mental limitation. while<br />

"handicapped referr to the Interpretation and limibtionr<br />

put on by society and "handicap" inomorates the com-<br />

ponent of equalization as in a horse race.<br />

PHILOSOPHY AND PURPOSE The aroani2ation is bared on<br />

. .<br />

and accerr~b~~ to an ~~~i~~~ in the community, SUC~<br />

t~anrportation, housing, employment. education and recreation,<br />

as a matter of nghi: on he ptincip1e that disabled<br />

people have an equal reiponsibilihiwith the rest of society:<br />

and on the ptincipie that dlrabled people sre their own<br />

best spokerperronr.<br />

GOaS AND OWECTIVES. 111 To provide a forum of ex-<br />

change of Infarmation and perronne1 intarnatianally, par^<br />

titularly qualified dirabled advlron In program deuei-<br />

opment such as emp1oymmt. kanrpollation. education.<br />

housing and technlcai aids etc: 121 to be a voice for<br />

persons with disabilities at the international hvel, par-<br />

32<br />

Ihr Sreenng Corliil>iirr of Dirnblcii Peoplir' inrmmiinnnl lDPIl me; la<br />

World Congress vjllPi in No~ie,,lbur oiDecemher l'J8i Plctirrrii with i<br />

Mql"'". fiebnd Henly Ennr. Choirperno". C"""dY. Jmo Femeim. CO<br />

Bebels. AuamIia, Bengi Lindqulsi. l4ceChaimemn. Sueden, Lord Ma,<br />

pore ond Jurh". T M0fl"go. Z!mbobiue. fJucqu.ii"e carmm. Awnh<br />

Argentines that uhelchoiiu~rr must my thelare of an ercon. ThLLrhc<br />

ticularfy keeping In mind the developing caunider: 131 to<br />

monitor and evaluate eating legislation, programs and<br />

services affedng disabled people and to work for changer<br />

in a conrmctive manner, clearly pinpointing weaknerrer<br />

and gaps and providing altemativer: 141 to rtimvlafe tho<br />

creation of organizations OF dirabled people all over the<br />

wond, pamcuiady in the deuel0ping counbles: 151 to pro-<br />

mote solidatity on a wodd-ude scale: 161 to be pallnerr in<br />

planning and decision-making in all sewices affecting the<br />

lives of dirablad penonr; 171 lo pmvidea vehicle for public<br />

education concerning disabled people at an international<br />

level: I81 to be a vehicle for self-help for disabled people.<br />

MANDATE W SIEEmG COMDmTEE The Steering Commit-<br />

tee war directed to 11) drafi a consdh~tion: 121 pian and<br />

organize a World Conference in 1981: 131 make contact<br />

with other organbtionr of dirabled penonr on bath n a~<br />

tional and international levels: 141 explore aU porribie<br />

rourcer of funding and other resources: 151 rerearch and


hh!n ni 0croD.r i'ii0 lirld ciivsr Slr:blpole for ille alte of ,I?? /fi\i<br />

lilhim's Lord Movvrorr fFiun8 row I to O Ed Robe*. US A. Lrom<br />

to Rlra, and Tombo Cnmom. Mountanie, iRork mu, I to rl Gurruu<br />

,,of Dubim. AMennon Fewr TD . Ron Chandrnn-Dudley Smngc~<br />

80, iua4 pienntedlmm mending by the iesuimment 01 Aemlinms<br />

rnfilud m do1<br />

the hrrt iniemational Wodd donmess of DPl for Singapore<br />

in November or December 1981. The congress wiii cvsi-<br />

"ate the imoact of the lntemationai Year of UTahled<br />

Persons and set policies and pliotitier for the future.<br />

The Disabled Peoples' Internahanal aHimr that people<br />

with dirabiiitier have consistently bean denied the right b<br />

full" .. Pallicioate . in rociem as hoe and eaual memberr. One<br />

quarter of thewori8r population is either d'sbled or inthe<br />

family of a dirabled person and. conrequentiy, k aflected.<br />

it is the intention of Disabled Peopior' International to use<br />

the voting power a1 this quaner of the ruaiid'r papulation<br />

to force govemmenk at iocai, nanonai, and international<br />

levels to le4irlate for and orovide for the needs of dirabied<br />

peopie.<br />

Delegates to the Singapore Wodd Congress wili be<br />

chosen bv national disabled or~animtionr accordin- to<br />

population. Each nation will be allowed one delegate per<br />

one million p~rsons to a maximum of 20 deiegater.<br />

d he steedng camminee chose singapore as the rite lor<br />

the conference to demonmate the emphasis on the needr<br />

of disabled pemnr in Third Warid counmer.<br />

ALL DISABLED INDlVlDURLS AND ORCAPIZnllONS -COME'<br />

DPI wili skive toward unity among dirabied people and<br />

their oraanizations worldwide and encoumae mutual r a~<br />

operation, assistance and undenlandlng among dl people.<br />

It is palticuiariy concemed with reaching disabled organi-<br />

zations in the develo~ins . . caunmer and in assirtin4 with<br />

their reltholp effartr.<br />

Ail organ bat ion^ OF the disabled in ail counmer<br />

are invited to oamcioate IUIV in a11 actiultier. put your<br />

- 2 11329,<br />

explore relationships to other international organmitianr;<br />

16) develop a working relationship and consultive status<br />

~ t ~ & Sweden. h ~ ~ ~ .<br />

- .<br />

with Rehabinfation lntemational and the Un~ted Nations.<br />

keeping in mind that ar an organbation of disabled people<br />

it adds a palticular perspective to the planning of rehabilitation<br />

rendces and that it ir concemed with a much<br />

broader range of reMcer than rehabilitation - re~cei<br />

such as hanrportation, employment, accerribllhi, educa-<br />

Other members oi the Steenng Camminee are: Tarnbo<br />

Camara. B.P. 583. Nouakchon Maulitanio: . Jamuehe .<br />

Cameras. Ertomha1650. 1430 Buenm Airer. Argentina:<br />

Ron Chandran-Dudley. 33 Wilkinran Road. Singapore<br />

1543: Joao Feneira. San Jose. Apartado 52W. Costa<br />

Rita: Gusts" Beheir. Eartern Creek PO., New South<br />

tion snd h0uring.<br />

Wales 2766. AurD-aiia: Hanan Kamal. PO. Box 753.<br />

Manama. Bahrain: Alice Maiouf. PO. Box 753 Manama<br />

W0RI.D CONGRESS OF DISABLED in October, <strong>1980</strong>. the Bahrain: Lsam Maguire. 1li~h'WheeIchal~ ~ssaciation:<br />

Steering Committee met in Dublin. If adopted a constitu- Ciontad Dublin 3. Ireland: Joshua T. Malinga. PO. Box<br />

tion based on that of the International Labour Omnib 7031. Mailikd, Bulawayo. Zimbabwe: and Ed Robens.<br />

Director. California Depanment of Rehabiiiration. Room<br />

322. 830 K Street Mail. Sacramento. California 95814.<br />

G L


The <strong>Gazette</strong> Editors'<br />

<strong>1980</strong> Study - Tour of<br />

Independent Living in ~ uro~<br />

,ioprollyh," < ,,,, fo,,"bc,-l?", li, ,Iii Ueo,lioiirgoiiilaue:ollier<br />

nlisrun~ and p~nrrhillu i:udird ler rvpii<br />

We did it We went b Europe during the spnng of <strong>1980</strong><br />

and met some of our G-ne hiend. with whom we have<br />

been comesoondins ior more than 20 wan.<br />

by Gini and Joe Laurie<br />

. .<br />

we could not be ro near to ra many of oui G-Ue Mends<br />

without seeing them. ro we added another month on our<br />

own, bought Euraiipaises and Bnbailparier, and visited<br />

six more counhles - France. Belgium. Switzerland,<br />

Sweden. Scotland, and Ireland.<br />

In this account we share the hiohliohk * of the . iav . of<br />

seeing our mends and we include hin& far G W ~<br />

travelen. especially respirator-uren, glimpses of living indeoendenilv<br />

- Eurooean . stvie. .. and some Eumwan ideas<br />

and programs that wn be adapted to the United Stater<br />

and others that should be avoided.<br />

To start off. we found a oackaoe . - tour that included an<br />

apament in Pans h three week. Gini's sister, Mickie<br />

Martin, the Gozene's libmnan, decided to go dong. Adear<br />

old inend, Manon Greene, who war a voiunteer with Gini Joe l'uns,n,t 'hore,,i ' 2hl>ildie Mono,?, nnd Gill, in honi 01 our<br />

back in Toomey Padan days, lo%ned us for the Pans and apvn,rlrrli an Plorr Ullar!es U~aiiin a iho hem 01 Montmnnre.<br />

34<br />

experiences hitch-hiking around Europe in a wheelchair A<br />

polio quad since childhood, she was bom in Sweden and<br />

lefl there 14 years ago "because it war rupenegregated."<br />

She is anending the Sorbonne. shldying Engteh, Russian,<br />

theology, and English literature and planning to be a Rursian<br />

Orthodox nun and live in a convent in Yuqasiavia.<br />

Despite exams. she found time to be graciovl and heiphil.<br />

she speakr and mtes nuantis A~~.~ss: I square<br />

de ia Brwe. 75016 Paris.<br />

We had lunch at a Chinese rmurant ivith Soiveig and<br />

Guy Papelard, a polio para, who is piannmg a reven~unit<br />

facili~ with attendant care in a new town for 30.000 being<br />

bull earl of Pair. He would like to promote the exchange<br />

of disabled penonr between France and the UnitedSiatt.<br />

If anyone would like to arrange an exchange, write to him<br />

(in French) at 2. Residence La Madelebe. 78460 Chev~<br />

REHRRILFATION GIVETTE


euse. (Also, see the letter ham his uile in Fdendr Around<br />

The World.)<br />

in a wild rain storm. we hacked down the headquanen<br />

of Groupemenf Pour L'inrertlon Der Hand


CI>,>rl?q !~>,>s,:#d,>. C W \ ~ # ~ # r~senrcl7 ~ c,>e,~>mt zn Su>!!aerim~d<br />

DENMARK Aiier tile foggy rains of Pans and Lucerne, itwas<br />

a joy to have a weeic of Scandinavian sunshine. Our over<br />

night trip on the hain ended vey eady in the morning in<br />

Copenhagen. We taxied to the Collecbve House. a 13-<br />

stow complex of 174 apartments br the disabled. At the<br />

moment we anived, a little veilow car meed around the<br />

. . .<br />

irh equivalent of smorgasbord1 Preben, who ir dirabied<br />

by cerebral pairy. had worked ar chief of public relations<br />

for the Society and Home for the Disabled lor 27 yeair<br />

Hannalire has dislocated hips and walk with canes. Their<br />

English is fluent and th*r knowiedge of dirabied affairs,<br />

music, literature and poiltivr encyctopedic. Their addreir is<br />

Vandtamrvei 19. DK 2860 S@on.<br />

Anofher fascinating Englirh~rpeaking perm" with whom<br />

A,Idl Rc#:zk cu,~c~,,f~#r~ 88, .S,. 0810 h5 7>t2!$j rrros>:<br />

we rpmt nnle u.aa Pee, Rerriiev, "ir~cfnr oi the Danish<br />

Paraplegia Aaroc~ahon A 5-6 quad, he is planning lo iludy<br />

medicine. He is vey interested in receiving copier of d<br />

typer of legiriation benehbng the d~rabled. His address<br />

is Landshrentngen a1 Vanwre. Lyngbyvej 32d. 2100<br />

Copenhagen.<br />

SWEDEN 0" Good Friday we went by ieq and hain to<br />

spend Easter weekend with another old Goleae Mod.<br />

Adolf Rahka, in Stockholm. His aade in the 1966 Game,<br />

"Odyssey of a Bavarian Scholar" told the stow of<br />

his German rchoiarship to the USA. He is now working<br />

an his doctorate hom the University of California-Lm<br />

Angeier in urban planning at the Unlversiw of Sweden.<br />

Another suoeib host, he made rwm for us in his anan<br />

ment. had a welcoming party. and to have ui<br />

h.anrported in a parade d differed vans to meet disabled<br />

D~=o~s. to the FO~US natr and other faciiitier. and to<br />

do a bit d sightseeing that included rome of Stockhoim'r<br />

enchanting iriandr. Adoif. who has been a rerplratoy


polio quad slnce 1961, has evolved aface marktouse with<br />

his night remirator sa he can be alone at night and put an<br />

and remove his own mark. His addre is Professonrlin~<br />

gan 39. 104 05 Stockholm.<br />

ENGLAND ~y overnight and bmt hinr, we made our way<br />

to London. Our fiend, Manon. had found us a very small<br />

and accessible hotel in the convenient location af the<br />

scotch House Mangle in Knightsbndge. (The Knightsbndge<br />

Green Hotel. 159 Knightibtidge. SWI. Phone 01~<br />

504-6274) That wekend we had a warm welcome fmm<br />

sir pamck and ~adu ~amilton at a lovelv dinner at then<br />

Our first long trek war by bur and raxi to a far pan of<br />

London to see Paul and Chdstina Ddver Paul, who has<br />

been a respiratory polio quad gnce 1955. is an active<br />

member of the international Mouth and Foot pvnting an^<br />

kt$. we conesponded with Paul far many yean when he<br />

was living in a nursing home It was a great joy to see 1hat<br />

he had recendy mamed a beautihi young lady homSwiU~<br />

erland and moved into a subsidired aparhmeni They haw<br />

two children, aaed one and Wo. Paul ddves his "invalid"<br />

hicycle with his feet and pain* with the brush held be^<br />

tween his teeth.<br />

We talked to so many people and went to ra many<br />

place in and around London that we shall have space to<br />

list only a feu Everyone war ro helphi and m gracious<br />

that we dream of returnins to see them and ali the other<br />

dear people whom we had hoped to find time to see. Paul<br />

Bates. a respiratory polb quad, provided ur with a long list<br />

of the other respirator-usen in England. Pat Orbom* gave<br />

US the details of her expenmeni in furnishing attendant<br />

care, the Crwraads Care Scheme. We had a del~ctable<br />

ten with FeliciN Lane Fax her maVler and Heather Jimenec.<br />

Feliciw, a rerpirafoy polio quad, har been active in<br />

politics and social welfare for many yean Lady Hamilton<br />

made anangementr for ur to have an extensive tour of the<br />

vey comprehensive information centei Disabled Living<br />

Foundation. We were vey impressed unth the scope of<br />

information and wilh the breadth ol ib dimination.<br />

We had a visit with Peter Deakin of Neath Hlll Pmfe<br />

sion.4 Workshop, learning of the plans for a few people<br />

with communication problems to live and work in the new<br />

town, Milton Keynes Clty We had helpfuladvice and widance<br />

from Peter Wade. one of the UK's lending disabled<br />

persons. John Keet of the Greater London Association for<br />

the Disabled, Vic Flmkelrtein of the Union of the PhyricalL<br />

ly Impaired Against Segregation, Jo Campling. author of<br />

Beer Liwrlor Disabled Women, Peter Large. a lobbyist<br />

for disabied causes. Ron Traven of he Cheshire Homer.<br />

Derek LancarterGaye of the Spartic Sockhi. Tony Nonh~<br />

more of the Mobiliiy Information and Demonmation Srr~<br />

vice and Roger Jefcoaie. a technical aids consultant.<br />

We rpont horn at the office 01 the Disablblemenf income<br />

~roup (DIG]. the leading ~rg~nir~ti~n<br />

I9(WOLUME XWO<br />

m ~ r ~ ~ t<br />

{l ,,,! I,,,, i h , I , il L,,.,,~I lil,! iild, lolls !I i011d111<br />

Brita,n We "#sited the Centre an Environment f"r the<br />

Handicapped and lho noted arcliiloct Solwyn Goidimifh.<br />

and Rosalie Wilkinr of "LinC N program rbpped by our<br />

hotel.<br />

Our visit to the new office of the Spinal lnjudes Associa-<br />

tion 15 Crowndale Road. LondonNW1 ITU1 led to many<br />

pleasant happenings. We had lunch in a nearby pub with<br />

the director Stephen Bradshaw, a paraple@c, and Robin<br />

and Joan Dawe, who are both haumatic quads. The<br />

Dawee asked un Lo via thew new hause and offered to<br />

d"ve us to ree Gmeae fnendr in the Oxford area. A<br />

few days later they met us at a bin station near Oxford.<br />

We raw their accessible and efficient home and garden.<br />

They drove us to lunchat thecharming old home of Diana<br />

and Robin Cavendish. Robin is still using the unique<br />

wheelchair cum respirator which was leatured in the 1966<br />

Gmtte. Then we went with them to Nufield Orthopaedic<br />

canhe to a rerphtey pollo quad. D~~~~ ~ta~l~..<br />

a psychologist, and over to Oxford to meet May Ramsbotham,<br />

a h-aumabc quad.<br />

.- ,<br />

- 4 v<br />

- 1


We had a delightful evening - ... """. ".""iC wc<br />

smuggled into our hotel rarmr - with Ken and Margaret<br />

Davis, who are both traumatic ouadi. Thew have dsvelb<br />

opedthe Gmve Road Housing scheme a;a solution to<br />

their housing and anendant needs. We spent a fascinating<br />

, . .<br />

eveninQ with Dr GeoihevT Soencer an anaerthstiri who<br />

has championed the came of inpintoy polior and set up<br />

a system of home care and equipment maintenance.<br />

Jo Sandiiord iDr Bnan Sandiiord's widow) and Philip<br />

Mason, a haumatic quad. made anangemenC, for ur to<br />

spend a weekend at Le cou* to visit old mend. at this<br />

Cheshire Hame in Hampihire. We went down by hain and<br />

we were met by one of the residenh. Nonnan Evans.<br />

whoe wife. Barbara. is a longtime Gozefte mend. If was a<br />

beautif" experience to see so many people whose name<br />

we've seen for so many yeam in the Le Coun newsletter<br />

and in The Cherhire Smile. Some of the ieridenh have<br />

been at Le Coun for 30 years. Le Coun rr called the<br />

"ebte" home because thee 1ong6me residents have faken<br />

over much of the management It war equally exciting to<br />

talk to some of the newer reride"& who are wng !a work<br />

out a system of funding attendant care sewices so they can<br />

qa out into the communi~ and live indwndenilv<br />

Paraplegic Asrociation war an annxenng ielvice all of the<br />

weekend we wore there. We had a very delightful virif urn<br />

Marjoy Corheld at the Thistle Foundatiodr horiel. Mar<br />

jory has been a polio quad since 1950. Her address is<br />

Thistie Foundation Hostel. Cnlgmilla~ Edinburgh ED16<br />

4EA. We changed "=ins many times and rode a few an<br />

our way from Edinburgh to Dublin and we stopped off<br />

in Dumfner to see Lhe home of Joe's ancestress. Annie<br />

Laune.<br />

ERELANO. Our wonderful mend, Ethna O'Dawd, made our<br />

week in Dublin memorabie. Ethna has lived at Chq Orchard Hospital for 21 years. She sleeps there in an iron<br />

lung but she is ambulato~ and she is irieraiiy a walking<br />

encyclopedia of Ireland. She and her mends drove ur all<br />

around Duhlln and the surrounding area, taking ur to the<br />

Abbey Theate, the Sacred Hean Convent, an lnrh music<br />

festival. Drogheda and many other places we wanted to<br />

see. Her address is Ward 7, Chew Orchard Hospital.<br />

Ballyfemot, Dublin 10.


1 . .! rib j<br />

"u'<br />

5<br />

.&<br />

< .<br />

Another hospitable group of friends. tho Irish Wheelchair<br />

Association. welcomed ir, and gave us the details 01<br />

heir contributions to rehabilltation in Ireland. Paddy Byrne<br />

drove ur around lo rehabilitation facilihei and heated us ta<br />

lunch in an old canie. The Asrouation has branches all<br />

over Ireland. We were dirappinted not to meel one 01 the<br />

founders of the Association, Lord Dunraven, but he muid<br />

not make it to Dublin while we were there. The address a<br />

Arar Chuchulain. Black Heath Dnve, Cionfaif, Dublin 3.<br />

The day belore we left. we raw a any ad in a weekly<br />

wide to Dublin that asked people who were interested in<br />

~- loining the Disabled People Action Group lo telephone.<br />

We called and arranged to meet the young men who rtari~<br />

" . ed the organization at lunch. Sean Richardson and Tom<br />

Gallagher They and their member5 are working on legi.ia-<br />

J~ o comne!! on,+ rrilno i)'r)ll~.r! .ilomlng h& in Duhlilr<br />

tion and would Ike to have inlormation on US. laws.<br />

Their address is 8 Charlemont Sheet, Dublin 2.<br />

Random Observations and implications for the United States<br />

.The probieror of the dilabled cannot b~ raiuad outside the need roeciai hourins and 98% ol the disabled can "re "mobilinr<br />

racial and economic conte* of each caunrm<br />

housing" - that is, houringuifh ac-ibte entrances and e%en~<br />

The energy cmru. un.mploymmt, and innstion affectail weliar< ti11 movement throughout<br />

program% ConrpquenUy. the US. independent living Wemr Europeans rend mare occupational therapkb into indlududs<br />

should pian the,. r.ntcm to opPmiih .conomica1iy and to b~come homer to teach technique and suggest adapbhonn. An OT<br />

self-ruooomns. .. .<br />

would be a valuabie addition to the ref! of each independent<br />

Many Euroman pr-mr andconcepts havpwatpatentiai lor 1,wng centor<br />

adaptation in the US. Hwsvar, programs cannot be banrplant~ . Govemmenls rune, from . "U"ivp~I Bureauiratic Ma""<br />

ad in (heir entirew but mud be brought as seedlings to evolve which ourei them to kee~ &bled and sidariy parsons in im6~<br />

naturaUy to fit Amencan fiieny1e.<br />

lutianr at Niice the cost of hmirhing mppa* iarvice in ,hair<br />

. lndepondent livingis a ceiative tern. fndependence lo one indi- homer.<br />

"dual may be dependence to anofha* and ulm vow.<br />

The mmt imoonant factor. lreedom to choaie the dean* 01<br />

inde~endencs or demndpncm mmt rvihibie to one's i"dlvldua1<br />

Many 3ovwly dii~bl~d ind,vldudr *rape horn i"d~ti0". by<br />

mawing - ,ha3 indwbng that th.9 "*ad anendant not initit".<br />

tiom care<br />

life*1hie and iocl paitem.<br />

Famliler are the anchm of home cam. Thw should be paid as<br />

Amludinal badsn are universal!<br />

they are in Denmark and Uley should be pmwded oppoduwtier<br />

The movement to ieil-debmination by the didlad Is world^<br />

"Ada Mort Eui0p.a" counbler -d irgiriation ilmilar to ihe<br />

lor regular respit..<br />

The government3 m iha smdhawan colmhl.. iind England<br />

Rehab Act 01 1973 dunnq the mid~l970'r~<br />

lumish Eommunihihain.d heloen b dimbled oenonr who ran<br />

the US. would be 1-d locations of squipmmnl and aids inlor per day and who do nd have family mistance or rulficxent in-<br />

maaon. The Engilrh mobile vans that b.ng equipment infama come h purchar help, mayiiva in romp ",mdreridc"hal home<br />

tion and8am~Ie1ound thecounlmwould beeasilvadaobblsto or nuoina hams.<br />

~ ~~ - ~ -<br />

cam<br />

.Mort Eumwan govemmen* prwide dtera#onr and adapiaeons<br />

b heip &hied .nd SI~~IY penon. remain in mir oun<br />

. -<br />

lundr lo individualr to hi,. and hain their nun adendanfsurll be<br />

more ~"jtabl~. . ~ot.i~~ accessibis D U ~ hanrporiation I ~ is monweni in<br />

homer.<br />

.I.. v.,. ..,I ,z,, ,,,I,,,,,, ). ,I,. rm


- -<br />

grating. ar~ionr 01 goup therapy and ogpo""n,tic ,or ramiiy<br />

respite<br />

w e met with some EuropPanr who wpre living in segregated<br />

residential hcilivar. Tha U.S. should noLcapy iheugsgation, but<br />

obiewe how the moio oromenu. . - omanvations are chan.ma . . to<br />

meetthecurrent bend lo indepndenliiving by pr&dingrupm"<br />

sewices in the home.<br />

w e met wth many Eurow." dirahied who ha- wmked out<br />

their om wnw of liuing independentiy within heir own govern.<br />

Travel<br />

European Travel Suggestions for Wheelchair- and<br />

Respirator-Users<br />

menbl nj*temr :The?. an no European count.w* of the<br />

uniquely Amencan disabled-dlrerled. "on-reridential, independen*<br />

iiwg r.nt- 1<br />

I n Europe. as in the US.. the way to independence ir a system<br />

of indlwdual aMr.r. not a building Tho admonition. "B.wara<br />

Editon. If you wouldiihe mom deloilron our tptoEump~, wrib<br />

lo Dione E. Woods Piow Cmrdinator Wodd Rehabrlftotfon<br />

Fund. inc. 4W E d 34th Street Neu Yuih, NY IW16 ond orh<br />

iora free moyofthe bmh iuhich GlniLaune andJoyce andLu<br />

Frieden houe ionnen on fheiiEumpeonleiiowrhip tours<br />

OIS~LED TRAWL GVIDEBOOW. Send lor the free lisii of can find adaptors for the mare obviou types of plugs<br />

guidebookrpubllrhed by theRoya1 Association IorDirab~J<br />

iv and <strong>Rehabilitation</strong> (RADAR]. 25 MortlmeiSkeet. London<br />

WIN 8AE and by Rehabilibtion International USA.<br />

20 West 40th Sheet. New York. NY 10018.<br />

at travel shops or F-ur Company, 353 Park Avenue<br />

South. New Ymk. NY 10010 or PacificKing, 1526 West<br />

7th Street, Los Angeies. California 90017 DL Spencer<br />

keeps a stack of bath the obvious and the odd ones.<br />

GUIDES m MEXPENSIYETRAVEL We enthusiastically rocom<br />

Although medical and hospital costs are free to resiL<br />

dents, they are high for tmveleri. :Blue Cross will reim~<br />

mend the paperbackguidesthat are regularly compiled by<br />

Hatvard rtudentc. We used three of them, one lor Europe.<br />

one for France, and one for the UK and lieland. You can<br />

find them at most book stores or write to Haward Student<br />

burse a percentage.) In England, if you need ememency<br />

we-eatment, both medical care and hmplbliration will be<br />

hee.<br />

There is a special wing of a holiday how at NeBey,<br />

Agencies. Inc. 4 Holyoke Street Cambtidge. Maaachurem<br />

02138. The one on Bntain and Ireland has a section<br />

on the disabled.<br />

Hampshire, an Southampton Wate~ that 1s equipped for<br />

four respirator-users. The wing has one large Oar. one<br />

smaller Bat, and two single raoms. The staff will give any<br />

cumeLmE FOR ResPmmnuSERS. If you plan to go to<br />

assistance needed or one may bring the whole family. ihe<br />

coif rr about $900 a week. or hfmation. write to a<br />

Europe with a respirator, start your hip plans many many<br />

months ahead. Write to Dr GeoMey T Spencer Phippr<br />

respirator-user. Gill Whitworth. who does the booking. Her<br />

address is Reh-esh. 7 Stackwell Park Crescent. London<br />

Respiratory Unit. South Western Hmpital. London. SW9.<br />

England. He will be very understanding and helpful. TeU<br />

him what counhiei you plan fa visit and exadly what type<br />

of respirator yo" will be btingng,<br />

Our US. mpirators are nol made lor w in Europe!<br />

England, for instance. uses 240 volts and 50 cycler Our<br />

Amencan rerpintorroperate on 110volts and 60 cycler so<br />

they will not work in Europewithoufab-anrianrimeri AkDr<br />

SW9 ODG.<br />

Eight-Month Study Trip<br />

Around Europe<br />

by Tetsuji Tornikoruo<br />

@<br />

Spencer If you may bonav one oi hlr or if you should<br />

bring one. (The Gmae plans to have a hanslolm~r that<br />

YOU may borrow. But let us know a long time ahead. We<br />

can also give you more name;- and addresser drerpirafor<br />

In the 1968 issue of the Rehobifitation Gmtte, Tehuji<br />

Tomikawa told the story of his life, his hopes and his pianr<br />

to help deaf people In Japan. (He lost hts heaingat the age<br />

of nine because of meningitis. ~e user japanere and<br />

US" in Europe.)<br />

Our American plw do not Bt Ewopean receptacles! A<br />

different hw of plug is used in almost every counw in<br />

Europe and aimort evew town in France and Italy You<br />

American rig" language1<br />

He has been a Goeeae reader for many yean. In Febiuay.<br />

<strong>1980</strong>. he visited the editors and wartheguesrd honor<br />

at a paw for the St Louis deaf community. The following


letter. dated Septembm 30. <strong>1980</strong>, dercriber his resaarch Laurie's. You see how small the world is!), 4 days in<br />

adyssey b study training and pmgramr which would be Munich. 2 days m Heidelberg, one day in Frankenthal.<br />

uselul to Japanese deaf people.<br />

2 days in Erren. 6 days in Oslo. 3 days in Bergen. 8 days<br />

"it was nice to become acquainted with you while 1 war in Stockholm (my sponsor in Stockholm was Mr. Adoif<br />

inst Louis. I havereturnedtoJapan. Itirnlce to be home Rabka). 37 days in Hamburg. 18 dayr in Copenhagen.<br />

.,in, aher six yean of hard study in the United one day in Hanover. 6 dayr in Berlin and 5 dayr in<br />

Stater and my elghthmonth rerearch tnp mnd the Eura Moscow.<br />

paan continent.<br />

"I boarded the Marcow-Khabarourk TransSiberia train<br />

"Aher st. Louis. I visited Washinson. DC ior 8 dayr, on September 9 in Moscow, amved in Khabarovrk at<br />

25 days in New York. 6 dayr in London, 12 days in Scot- 20:00 on September 17, took the airplane for Nugata<br />

land, 12 days in PMi, 6 days in Amsterdam, 3 days in (about 400 miles wet ol Tokyo] on September 18. than<br />

Madrid. 3 dayr in Barcelona. 2 days in Marseille. 8 dayr in took the train hom there fa Tokyo, and returned to my<br />

Rome. 9 days in Athens. 4 dayr in Uenna. 20 days in<br />

Swiherland (Geneva, Lausanne. Fnbourg. Bern. Lucerne.<br />

broiheis home on September 19."<br />

Add,-: Tehuji Tomikawa, cia Mr Kunko Tomibwa.<br />

and Zurich. My room and board sponson in Luceme were 2~1~12 Tsukushi-ra. Yatsukaido~cho. inba-gun. Chiba~ken.<br />

Mr. and Mrr. Charles Froelicher, Gorette friends of the Japan 284.<br />

Ten Days in Japan @ by JOJ," inbaa<br />

Last May, at the suggestion of DL Marao Nagai, the Japa- one city to the other: viilted a horpiid in Osaka to mat my<br />

"ere Red Cmss asked the Gazeiteediloir for the nameafa foot after breaking a chip off the bane: had a "en/ pleasdisabled<br />

lawyer In the US. who would like to come to ant dinner with Mr Maellma who ir a wheelchair member<br />

Japan lor a special project and who would be the counter-<br />

pan of the Japanese panelist. Mr Minom Mumia - age<br />

42, attorney, wheelchaired by polio during childhood.<br />

Since John Leiboid of Columbus. Ohio, came dore to<br />

meeting the rpecificationr - in his 40's. an attomey. and<br />

a polio quad since he was teenaged - he war called.<br />

Following is his acmunt of the 10-day hip.<br />

"About May I war contaaed by an old lriend hom<br />

St. Louir. Gini Laurie. who arked me if I would go to<br />

Japm, expenses paid I hesitated about 3 miliiiecandr.<br />

of the Diet who wanti to promote the cause of disabled<br />

throush . ledslation. .<br />

"I loved the counw and the people. I have never seen<br />

disabled persons an pubiic broadcasting in connection<br />

with the year 1981 being The Year of the Disabied. %is<br />

dual pumore is &wically Japanese. Americans look like<br />

casual poke~alongr rumpared La Japanese in many ways.<br />

and raid YES. The tno cme tweiher and I went for "In the cause of orornotino .!LC?, it. :.-l,L,r,i,< .:., -, ,,".,,,,., 1, .')\.,. ,L,L., , ? ,.~~~"c,<br />

,7 ..: I .* .If. (I.C * ,. t. .cLC~! . . , :.,;I., . TO< P.. *,. I,< r ;,, .td. .( ,. la,, L . ~<br />

(c,. :V< ,\T.,# :#.,# ~2~ Ih,#~~~.l?<br />

YO! ,A% .c ~mo?,e+ . . 8" ,i>od P,,rs ,#r<br />

lawyer in ~apan - they found it hard to believe that there<br />

.,n,PF, ?A~,,<br />

b.rw>I~ !!.,n.er I I ?nj~ r~c#.r~mnu -. .l.#.~.l,.- T,A ,I<br />

to chic&.<br />

four wheelchaired lawyen pramnng in coiumbus. "I could talk for hours about the tnp. ~t was much more<br />

"I did a long newspaper intennew, a radio intennew,<br />

a half-hour TV interview show, a 2% hour symposium. a<br />

interesting than a slghheeing mp and i made some great<br />

Mends. ML Maejima pmmired he'd see me again -either<br />

few rho* blkr I visited the new Nationai <strong>Rehabilitation</strong><br />

center, the Tokyo couits including the Japan Supreme<br />

in Japan or here."<br />

Coun building, the Osaka disabled spom center visited Addrerr: John Leibold, 300N High Sheet. Columbm,<br />

Tokyo and Osaka haveiling on the "bullet" hain from Ohio 43202.


ARMS - Self-Help Movement for<br />

MS People in Britain<br />

by John Simpkins<br />

letate. annoy or atherung di~amfil the'doctor who ha. i& will be applied ~;MS peopi~>multaneourly<br />

0, .,:. a,,< ... ./ ;I.. I . " i ~ , , . , . I I,., 8 : I.,.TS<br />

I


. must beunique -ce*inl~ it isso in Britain. The memben ~ , slmpkins h ~ penonne~ manose, by pm~mion her<br />

make policy and the deciriom, they aim do the chores of been chaiman O~ARMS~~,,~~ irr lncep~ion. H* hosliued ~ ith~s<br />

f~nd~~~iring and administration and through sheer deter forouer25yean. nbpamculorlnteirrtirin -rrh h~oddreu<br />

mination and outtmo . - their work where their mouths are, is 4. Pomonaoe Lone Blri~oosSIonford. . . Hem.. Enafaiand. ARMS<br />

they have created an entirely new and progressive arped Limied & lomied m 71 Gmys Inn Rmd, London WCIX 8TR<br />

in the British MS scene.<br />

Friends Around the World<br />

"Thank you far theGmtte 1975. It contains jut the infor<br />

mation some of "5 are reekins hereindellendent llvirn.<br />

I,. ..I ,> ,I, .I... nr.?r' ,.,. lie,~,.a~~@~,,n,< , ;,.,.I,<br />

1,-.,. 1. I... ,."h .:3, me c..~,<br />

:L ,..#,.. ,,,\k'SA I,wr.r d'l*<br />

,I. ..." I.',>, h.,,:> zz:,t., Iblc 3. I& 1':~ A,~P.~,<br />

, , .,A -1001, ," !<br />

l',l,,,$ ,. ,I.,., \" 8 ,Pi,,. .,< >",l,arG..,n, l,"-T><br />

I . 8 R r t 3 , . , .I<br />

".'.Il :. L',* I' 3nnr.r >,..+.,I ,I,"" hI' I .':..I.;<br />

~,<br />

Taylor and Mn. ~aGala V Nimbkar I have started a li~<br />

I980NOLUME XXIII 4.3


aw far portgmduate studenti and patients at Gouemment<br />

inriltute of Rehabiitation. do Dr S. Ramai. Taylor<br />

and Nimbkar Librani. Arhoke Piliar Road, K.K. Nagar,<br />

Madras 6000133. India. We shall be thankful for any boob<br />

or jaumalr." Dr Pmdip K. Mask Nilku~hidonga. P 0. Dst"d<br />

Puml,o, West Bengal 7<strong>23</strong>101, India<br />

would like to have ltiends hornall over the world LO mga~<br />

larly correspond with me. Moreover I like to maw a weet<br />

girl who help me overcoming my ioneiinesr. 1s there reaily<br />

any sweet one to respond me'>" Bimalendu Chokmboni.<br />

1/45 Asoke Nagor. Regent Pork CaIruna~700 040. Indio.<br />

I,,, ,,...I,, A ,I., 3r.n. ,,I .&7 ,?,,R..l>"l'. ,<br />

..t',, &.,


P,ir i'riai i t . Liliir I i.enlzli o lp0lnple411 in 1Y55<br />

h~nd~"adlil"l.~11m"ondii~rni,~o~po~,~"ildn"niny homer MY<br />

"My husband retired two yeam ago and we moved to<br />

T"cr0". We live near the univeoily . . . Wheelchair peopie<br />

do very much better if they become gmd anam and put<br />

on a cheey face. Gmng over fa the univeniw campus, I<br />

have experimented with diiferent a*hider. When I am<br />

looking good and put on a happy face, eveyne rays<br />

hello. On days when I am gloomy. vey law people speak<br />

The situation is diterent in a shopping center Nobody<br />

smiles at you, no matter how happy you are . . . Most<br />

people are a little unomfortable with disabled people. A<br />

cheertul word and a smile heip put people at ease- Mrs.<br />

Floyd E. Anderson. 1205 North Women Auenue. Tucson.<br />

Aaona 85719<br />

"I am off for a month ~Asiting revad caunnier in East<br />

Allica promoting muhla1 cooperative etorb and meeting<br />

with groups concerned mth the International Year of Dir~<br />

abled Persons . . . I am attaching a list of organktionr in<br />

Ahica which I think would be mterested in a coo" . , af the<br />

Rehabliifotion Ga~ate. It wiu be vev nice of you to send it<br />

to them." Jomer R. Bum. EdD. Executive Director.<br />

Peooie~to-Peoole Cornminee for the Handicaooed. 1522<br />

"I totallv amee with Lanv Schneida rooardlno rnsdlcal<br />

-. -<br />

my body demands. The manipuiation they proffer ir gwd<br />

for aches, pains, tighmerr. headache, etc" Jeon Sfange,<br />

11655 South Mo~leiuoadAuenue, Chicago. !liimoirM)655.<br />

"I became a paraplegic in an automobile accident in 1955<br />

and I graduated ham the Sf Louis Cavnly Special School<br />

Dirtm in 1963 . . . I was employed as a bookkeeper for<br />

the Earrer Seal Socioh, hom 1967 to Januam. . <strong>1980</strong>. . when<br />

I went h work lor Paraquad, 1nc . . . I enjoy playing the<br />

guitar and banjo and singing folk songs. Two of my lnends<br />

19SONOLUME XYIII<br />

and I have formed a moand we sing at pamer and numing<br />

homes. We have a lot of fun at thk and the oeoole in the<br />

made to the kitchen and bathroom:' P~;P~$, 4515<br />

Maryland Avenue. #409, St Lou. Mkoun 63108.<br />

"I want to have correspondence unfh dkbled persons<br />

[men and womenl. I am a reaaurant workei nandiiabled.


Books<br />

Anatomy of an Illness as Porcelved by the Patient<br />

Reflechons on Healing and Regenemtion. Norman<br />

Cousins. W. W Norton and Company, 500 Fifth Ave.<br />

New York 10036. 1979. 173 p. i$9.951 The outstanding<br />

statement of this bwh is hat each person ir rerponsible for<br />

the health of his own body andthatthe rare andheahoenf<br />

of that body rhauld occur in a partnemhip between doctor<br />

and patient. Although a doctor may be an oxpsn on cer~<br />

tain diseases, only the patient is an authotity on the feel-<br />

ings and reactions of his own body Courinr demanshaf~r<br />

this fact in his partnership with his dactor in overcam-<br />

ins ankyiosing rpondylitir, the anhritic-wpo direare that<br />

threatens his awn life. The favorable reaction oi three<br />

by Joyce Kniffen<br />

Tv wtiting with a felt pen. No pressure ir needed. Use a<br />

high utility chair or bar rtooi to rook or do dirher. Shetch<br />

rubber bands around a glarr to keep it ham siipgng. He<br />

giver many more no-nonsense, inexpensive hints that are<br />

urehi to anyone who 1s disabled.<br />

Throughouf his book he merrer watchwords, which are<br />

rlowiy, carefully, thoughhlly deliberately. He gives<br />

"concrete ideas an fighting and lhving with this mgmf<br />

disease."<br />

Reusewed byonolherlndiono lutitmwth MS..JemneCor, 1128<br />

Nonh Sim Nabiesuille, indtona 46060.<br />

The Habit of Boinq<br />

. .<br />

patient as a full partner in overcoming disease. This porn the South. lived uth lupus erythemamrur far thirteen<br />

biiihi is of particular interest to those who hive long term yeam. As well as wnting award~winning stories. ~iir<br />

dirabilitier and who are often bener informed about thefr O'Connar war a orolific lener wnter One of her Mendr.<br />

.I, , ,r. ."LILI!<br />

~ ! ~ ' ~ ~ ~ . h ~<br />

Il-.r.J63 $4:"<br />

% !>,#I .\+n c., r .# ., r, cb, I O C ! \I ~ ~ > w#cv a ,< 0 . t )I... 19-+ .>: i:?t,~~.,, , 3.3lc,> a .> ,: r,,,I<br />

' I


the role 01 the disabled in rouehi through a humanistic Elaine has served as wife, mother grandmother, androcid<br />

perspective. This book contrinr a literal hanrclipt of what worker in thls detailed story of the mals and triumph. 01<br />

occurred on thore three Saturdays. Although this method her life. Elaine and varlour members of herlamfly, mciud~<br />

of prerenting the material sometimes ioaves tho reader ing her husband Simon, her daughter and son. and her<br />

rather conhred. eipetia11y about what went on during<br />

some of the queition and annverpeliodi, the book ltrelf ir<br />

exciting reading. It give the reader the feeling of being<br />

daughter-in-law, reveal the factr and feelinas of this time of<br />

present at the achlal dircurrion.<br />

The seminars covered three different aspects of the<br />

disabled experience. The first discussed "Imager of the<br />

Handicapped" including the weamant of the disabled<br />

throughout history and in our literahlre. Alw, included in<br />

: , 7 , ', , , r, , , 9 i . , . " I,'. I.<br />

I. I.>>. r \ ,.I. I.. . .I I.. , .'I) .el. .111,..1 1 .*I,.,*<br />

'I~,,,,fi ,,v 5,,, . ,:. - ,,


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PIDI iamrni~ 6ew ei!aN Ag .(Xiols IammrH el!aN aqL1<br />

rms sylloj Su!y3saa<br />

'jaws psg ire3 OT 'moa plm 1a-H amog yuq 68<br />

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iq61a io uanas moqe lo1 sear= any a a~mrpuadxa 6u!<br />

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'4!!!qer!p lo ~malqaid aql 4 q~eoldde r,amag 'la $0 srau<br />

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aldoad A[lap!a pm pa(qm!p Aq alqesn pup oj ,,"ado,,<br />

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amapuadap Su!uuojaa :a!doad 6papla pue palqer~p<br />

6u!u!nq (cj :siaweq uope>!unmrum pue 'uopwodnueq<br />

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nluO papualui r! iooq s q .:~uiwAipe ~ lenx=<br />

e analq~e Aem ppw!pu! palqmp sq q,!qm Aq spaylaw<br />

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u uog=~jegm lenxs ana~qm a2 pa~emo>ua pup palarun02<br />

aq p~noqs pa~qeup qvzq q wbmnqd s!q 10 imql "!em<br />

aq! aiqepea~ fian su!ema~ pup rm6 s!q ranaqnp 614~1<br />

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uqrrn3sip aqt 10 POW 'alvm am pwnlu! pi02 pads an# $0


eceives aftention. Two separate chapters are devoted 10<br />

ouidelines for sexual counseiino and to a discussion of the<br />

Sexuslig and Nemomuscular Disease<br />

By Fiance Anderson. PhD.. Joan Bardach. PhD., and<br />

Joseph Goodgoid. M.D. Institute of <strong>Rehabilitation</strong> Medicine,<br />

New York Unive~siy Medical Cent* 400 Eart 34th<br />

Sheet. New York 10016. 52 p. The resulk of a midy<br />

invoivlng for& patient3 atthe Neuramuwuiar Direare con^<br />

ter at the lnstihite of Rehabdi,atian Medicine m New York<br />

and ~pomred by the Muscuiar Dyrhophy Assaiation<br />

are published in thls <strong>Rehabilitation</strong> Monograph No. 56.<br />

There patientr reprerent such neuromurcular diiarer<br />

as Ducheone'r type muscular dyshophy, spinal murcuiar<br />

ahophy Ftiedreich'r ataxla, and amyotrophic iaterai rcie~<br />

iorir. The baok is aimed at proferrionali involved with<br />

helping people with neuromuscuiar disease hut rhouid be<br />

helniui to anyone who &in my way involved with these<br />

~ ~<br />

diseases.<br />

The pumore of the pr0,ect. as stated in the inhoducthn.<br />

is to ~rouide infomation about tho rexuai Dmctices, problems<br />

and limitations of people with neuromurcular disem.<br />

"to make recommendations for wlutions to some of these<br />

~robiemr" and "to ~rovide quidolinei to facilitate the dii-<br />

I980NOLW XXm<br />

$15.95, hardcover) ThL is one of those book that evey<br />

newly dirabied person should have available lor reference<br />

as one ieams to adjust to living with one's disabiliw it aim<br />

contains iome new ideas for those who may have been<br />

dirabied for years although many of the suggestion. are<br />

things the long~term dirabied have probably learned by<br />

expenrive ma1 and error The baok is divided into eight<br />

iectianr inciudino inlormation on seif-heln aids "8.6cuiarly<br />

for communic~tion, integration into the oufide warld<br />

fhmugh education. hanrportatlon. rehabilitation and om^<br />

piayment, adapting a home, personal care. sexuaiihi.<br />

parenting and renetion. The ruggertians offered are<br />

by lype of disabiiitg ratherthan by cause. Nurner<br />

nu5 line drawinas uurlJate tho book A reoarate rection at<br />

~ ~ -"<br />

followed by an addrerr where it could be purchased. Also<br />

many of he alterations or adaptations suggested are exoeniive<br />

and far out oithe financial ranoeof man" &bled<br />

.<br />

h, ir: in,.. .ulr ,,"">,


EquipmentIReaders'<br />

- Ideas by Joe Laurie<br />

The <strong>Rehabilitation</strong> Gaze do= not accept any aduenwing The &ads ond deuice prerentid here wem sieoned by the editors from<br />

reoden'kmmond othersou-. Theyarep-n*ded ordeosjor the ieodemlopurrue on Lhelrown by sendingfor bmchuier andloterr<br />

pnce,. The Gareite dae. na rpecflc.iiy endam ony pmdun narortepr re3ponsibUityfora"y apDmnm*pnre i d .<br />

Hand Cycling<br />

Hand-wdaUed h-icvcier have been available for "ears, and<br />

stopping ior suppan For thore intmerted in this prabhlpe<br />

write to Doug Schwondt. RERonD imail stop 1531 VA<br />

Medical Center. 3801 Miranda Aoe, Palo Alto, Caiifornia<br />

94304. You can secure a copy ol Spa* 'N Spokes hom<br />

5201 N. 1Rh Aue., Suite Ill. Phoenk Anmno 85015.<br />

Community Pfqihing3, of Rifton, New York 12471.<br />

offer a hand~dtiven h-icycie. Thli orgaiurnaon ii also<br />

the Huttenan Society of Brothers [Bruderhof Community1<br />

which LILILILI itr history back to Jacob Hum. of the Xmi<br />

who was burned atthe stake in the 16th cent"/ Expelled<br />

hom Geman" an*. World War I in he Hitler era. the"<br />

Comrnunm Piouaylhingr' hand-dnuen cyclel lo roll age.<br />

M August Midiiels. Leuueospe Steenuieg 3.3711 OLU Tid. Bmbant. Beiaium.<br />

.$L.< .,., r,. L~~~~IT:v I, r: .1,.4 o).. .,,*,,: , ,I.s~ A, .nm, I, .< L, ,r \tar: ,..., v,,,,, ,.?'<br />

.'>Ill .?\ ' !nsdiS,\ 3N, *.>, ' b>~i:nl r r. , 1 ,:>$ ~~~.~l',.li~<br />

r, d.., r,:5A.,,.>L,,~,. I?, :j#ks,.C.,l<br />

., I... i I ,.I..,.) i r I 2 ' ,. I rrom l , LI, . I , 11,1 ,*' LI<br />

. .<br />

The educaSon of young children has been a primary<br />

concern of the Society of Brother; form year;. and the -<br />

rnanu1aaurr of play equipment, which .a means of livelihood<br />

in harmony "4th their way oliife. for over Wuenty~svkyears.<br />

The family v the imponant unit unthin the cornmunib,<br />

but each family belongs ptiman1y to the whole church<br />

cornmun~ty he ~mdeihaf ir not a remat hom the world:<br />

guest5 are asked to share in the work and life. Their reii.<br />

@on is that of the Mennonites, and their bciiefr are quite<br />

similar.<br />

Their catalogue offen many items of sturdy excellence<br />

for children for play Alra there ir the hand-due" hicycle<br />

with ih allLwelded steel frame, as shown in the acmrnpanyhg<br />

photasraph. There is a oneyear guarantee an all<br />

items offered in this booklet.<br />

Other hand cycles are available from Janssen USA,<br />

2885 S. Sonto Fe Dtiw, Engiewood, Caiomdo 80110.<br />

Write for their brachua ad ptia list Oithopedic<br />

Systems (Unicycle). Rt. 1, Box 138A. Nelsonuille. Ohio<br />

45764, manufacture an attachment which converb a<br />

wheelchair into a hicycle. In Europe, an attachment con^<br />

"ens the Onopedfa Wheelchoir a hand cycle. Write<br />

50<br />

of special work performed by thie people. ~hbabiy there<br />

are ather snlerp+ring bike-shop folk who would be inhlgued<br />

with such an addition to their normal burinmr.<br />

Alert Systems<br />

TELEPHONE WARNING %TEM Boston Universiiy School<br />

of Medicine. under a three~year grant irom HEW. devei-<br />

aped a system which h e been tested in the Boston area.<br />

Subscribers pay a monthly renhlofaboutll0. User; push<br />

a bunon on a unit clipped to a bet or warn around the<br />

neck, An elec&onic merrage is sent automatically via iele-<br />

phone lines to a receiving unit in the horpibl's emergency<br />

room, li the subscriber doer not anriver when called, the<br />

emergency room pnrormel contact a prearranged llrt of<br />

relatives and ftiends. The emergency room also has a 610<br />

on the rubn-tibeis medical histow and phyricianr. The<br />

system ha3 been inrslled in many hospisir across the<br />

counhy.<br />

m+murmoN G-E


etween 9 and 11 each moming. Those who do not call<br />

receive calls lmm volunreen. 11 there is no answer the<br />

~oiunteer caur relatives, hiendr, or the police.<br />

POSWS WATCH In many areas, members of the p-1<br />

local union of ~ le ~ntional ~etter Camerr ~ao-<br />

cantack racml agencies whkh take steps to delemine if<br />

help $5 needed.<br />

1 CU . 1110\1. IV'lllll ?$,TI" Ih. ..l..p.>:r<br />

.,,. l.l:l, - 3, '~..,,.,,. ,.; r'.".:. ,., , I.:,.I<br />

1. , . ,111. ,,"V ki .AI., ,.I., ,:,,?,..A, I, -. "9 . .<br />

, TI<br />

ryrhm measure5 inactiviy and rendre warning to a con^<br />

ha1 monltoting station when the customer fa& to perform<br />

routine achcnu recorded by sensors in Lh* bath-. rehiserator<br />

bedside table, and TVret. If there is no activity, a<br />

pre~alam signal ir rounded. The customer har five mm~<br />

utes to sound an OK. Othewire, a nearby neighbor is<br />

called and asked to check up.<br />

MOllM-OPERATED NIGHT CRWS In Texas, a rerpiratoy<br />

pollo quad sleeps with a length ofrhlng in his mouth. The<br />

other end is altached to a call-bell. If he needs asrisrance,<br />

he chews in the rhing until it sounds the bell. In Cdfomk,<br />

a call system has been developed by Bib Prentice. RN<br />

Rancho Lor Amisas Hospitoi 7601 Eost lmpenoi Htgh-<br />

voy. Daurney. Colifomia 90242. It has a baffey~powered<br />

bell, mounted on an adlustable gooseneck and amched to<br />

the bed kame. It 15 mggered by the tongue. Any Rancho<br />

outpatient may be supplied with one d these.<br />

Miscellaneous Readers' Ideas<br />

IURCONTROU4D SWTTCH. "Jean Stuart Company, Pleasantvilie.<br />

New Jeneu 08<strong>23</strong>2. carder in their monlhlv cata~<br />

logs. a wy handy inle dev/ce. I use it instead of reaching<br />

acroa a hot stave to plugiunplug skillet%, etc. and in other<br />

areas where switches are taa hioh !or me to reach. The unit<br />

consists of a plug. 18' plastic wire, and a bulb thci when<br />

3 lbr. pressure are exerted, will turn anid N, radio.<br />

lights. etc. The catalog number is XdR594 and the ptice is<br />

59.99 + 51.75 shipping and handling." Moiy Stoecklin.<br />

342 McKean Avenue. St Louis. Misoufl63108.<br />

BATHSEAT "For 24 years1 have been using a bath seat that<br />

my hubandand a neighbor made out of aboat seat -the<br />

kind you cany. with a iolddown back. They cut a horre-<br />

shoe-shaped hale in the reat and added "mnnen" made<br />

out oi 2x4'3 at the nght and lekildes of theseat. wmllel<br />

h the sides of the ,"b. The exha height of +5" ham the<br />

bottom 01 the tub shining the back of the person<br />

doing the bmng, room to reach under and wash the<br />

iower parts of the bdy and maker sitting more comhh<br />

able." Jean Stonge. 11655 Sooth Maplewood Auenue.<br />

Chicago. Iilinols 60655.<br />

CHOKMG REMEDY "if YOU are choking due to fluids or<br />

other matter clogging your windpipe, throat. nose, breath-<br />

ing passages. w havlng your arms raised above your head<br />

ar high as you are able. This lini the diaphmgm and forcer<br />

out exh-aneour matter. Advim those around you of this<br />

method before it may be needed ro even if you can't<br />

speak you will be able to sign to Vlem what. needed."<br />

Jean Stange. 11655 South Mopleiuood Auenue. Chicqqo.<br />

Illinois 6ffi55.<br />

COLD COMROLSl if Vle control box on your motod2ed<br />

wheelchair is tm cold an im daus. send a relfhddresed<br />

Troch. 44 Tollrack Lane, Nowe4 M-rhuse& 020661.<br />

CONCWLE HRMFi FOR SEWREPRONE WWlDUAL5<br />

James L. Mueller, Reieaich Arraciote. Jab Deuefopment<br />

Labamtoy. The George Woshinmon UniveiriY Medical<br />

Center Suite 420,<strong>23</strong>00 Eye S M. NU! Washington, DC<br />

20037, hardweloped a method for-produ6ninga hehetd<br />

Peiite, a ran foam plastic, which can be concealed beneath<br />

a cap, ung, turban, or hat WiVl the dirertiani available<br />

irom Mr Mucller, the process can be reproduced by local<br />

itation of buadtipleqio in the USA. It war rpcnally made<br />

for Tern/ it conmdie Hospital and rent to Harmawiile<br />

<strong>Rehabilitation</strong> Center Subreouentiu an orthoticr firm.<br />

. .<br />

menr ofihe Quodtiplegic upper odremity by Malick and<br />

Meyer: available kom he Harmawille Rehnbilibtion Cen-<br />

ter, Box 11460. Pittsburgh. Pennqilvania 15<strong>23</strong>2." Mis<br />

C.M.H. Meyer. OTR, Diredor. Occupotiond Thempy,<br />

Conmdie Hospital. PO. Howard Ploce. Pinelondr, C.P<br />

740.5. South Afnco.<br />

RBERGLASS PORTABLE RAMPS AND SPORTS CRUTCH are k~<br />

the process of being rnanuiactllctlled by a company started<br />

by two iirten who are disabled by multiple rclemsir. Free<br />

51


ochure from MiPort. fnc. 8442 Geomiona Lane. Indi-<br />

onopolis. lndiono 46226. Eventually. the company will of-<br />

fer tax rerrices. insurance, and bullding and remodelling.<br />

GARDEN TOOL HAMILES ''Auxiliay handles for spades.<br />

raker, etc. were developed by my husband to relieve the<br />

stain of working in the garden . ..They are now made by<br />

Marco PioducL.. 1259 El Comino Reoi, Suite 202, Menio<br />

Pork. Colifomio 94025."<br />

INCONTINEm PADS. ENGUSH. Geluiose Gel nadr are said to<br />

refain 300% more fluid than standard pads far women.<br />

Laminated in cotton wml and backed with plythene. lnfor<br />

mation from Gelui- Incontinence Products Ltd. 910<br />

King Street, Southport, Lancashire, Memy~ide, England.<br />

HOMEREMEDY FOR BLADDER PROBLEMS. "We make a tea of<br />

one teaspoonful of elderbeny blmromr to one mp bodng<br />

water Two or three cups per day roive mod kidney or<br />

bladder problems for me. Galhei the wid blowmr in<br />

mldiummer Pick over them carefully, discarding rtemr<br />

and leaves. Wash the blorromr in cold water and shake off<br />

excern moirture. Lay out to dty lor about a week on newe~<br />

papers or bravn paper bags They ,"ill keep for yeam in<br />

closed onrainor;. They can also be pvrchased at health<br />

food starer and some pharmacies." Jean Sfonge. 11655<br />

South Maplewood Awnue. Chicago. Illinois 60655.<br />

LEG BAG FORQUADS "In your interertingarllcle In the 1979<br />

Gozeffe on leg bags for quads, you omitted the Uiacare.<br />

which is the best he lound in 15 "ears. In man" carer it is<br />

an Ideal new style and appears to be quite univenai. The<br />

drain clamp is lanrartically eary to operate. Send for thek<br />

brochure. Urocare Praducti, Inc. 10031 Eart Rush Sheet,<br />

South El Monte. California 91733." Gmnf W Jones, Hifl~<br />

side Hmpitai Wonen, Ohio 44484.<br />

MASSACHUSETTS VAh MODFICAnONS Elmer C. Borkfelr.<br />

Massachusetts <strong>Rehabilitation</strong> Commissioner, Sfotier Omce<br />

Building, 20 Pmuidence Sect, Boston. Mossochusem<br />

02116, hiis initiated a van modification conrumer adviroy<br />

moup made up ol clients and ex-ciienk for whom the<br />

Cammiiiion has puchared van modificahoni. Th. group<br />

has made recommendationr relating to nfdy and perf or^<br />

mance standards.<br />

ONE TO ONE COMMLMiCATOR. A micronhone and an am^<br />

plihed speaker el8m1nates outs~de noises and laud tallung<br />

and, with a 20' cord, amplifies radio and TV Brachure<br />

from One to One Camrnunicotions. 678 West Cedar Box<br />

SWIWG FOR WLlO QUADS. "I have some motion in all<br />

f .,'",,,, I Ir'lo, p8.R.v an. *.,$ .: nn or<br />

o,nti~ I .rc


less rebuildable hom the ground up ' Le,o,r W Gumer<br />

man. MD.. Dimdoc Nucleor Medzrine, Poibytedan~<br />

Univerrity Hospital DeSala at O'Haro Srreeir. Pi8sbulgh.<br />

Pennsylvania 15213.<br />

Shoes<br />

CLAWSON ROCKER SHOE. lie result of 10 yem of study<br />

2nd develooment the otimar" , , work war conducted under<br />

iunding fro& the VA by DL ~ Peny ~ of ~~~~h~ ~ Lor ~<br />

Amigoi Hospital. According to Bert Goralnb oi the VA<br />

Pralheticr Center ?n New York. "It war found that the<br />

rocker rhoe, after certain modifications, can rubidhlte for<br />

the loss of loot and ankle rocker action but the patient<br />

must have retained rufflcienf strength of hip and knee extensors<br />

and ankle plantar flexors to pravlde the required<br />

limb riabillhi" It has been effective far individualr unth<br />

spastic calf muscles fmm multiple wieioris. shoke, arthritic<br />

conditionr or brain bauma. If murt be fitted by a proies~<br />

rional shoe Mter hained in gate analwir It costs about<br />

$100. Details homNew Freedom, lnr.. Box472. Rexburg,<br />

Idaho 83440.<br />

~ ~ i i ~<br />

CNGLISH SHOE DIRECTORY Foofweor Diredory a wide to<br />

types of special shoes and murces of supply $3.50 hom<br />

~isobied iiving~aundatioion, 346 en sing ton ~ igh street<br />

London W14 8NS. En~land.<br />

SHOE 51ZEZX E EWED! "I have had abioluteiy no luck at<br />

ail in buying rho- hom the 8 rhoe companies whose<br />

name you sent me. The houble is that they have double E<br />

IWNOLUME 1(XIII<br />

and wideroniy on luger rho- irlre 6 and up1 and nwer<br />

on my sire 2%'' Lucille Wedge, P 0. Box 164. Hill City,<br />

South Dakom 57745.<br />

SHOES W M IRREGUWY? "Do you find the tops of your<br />

shoes weanna out faster than the banom? In ourhlno the<br />

years to 'break in' abair oi rhoes and by that time the<br />

leather tops are badly cut no matter how oilen they are<br />

shined. Doer anyone know a perran or company who can<br />

refinish the tops of leather shoes7 1 would greatly appre~<br />

ciate hearing from you." Law Schneider 811 Nonh<br />

Long/ellow Avenue. Tucson. A-no 85711.<br />

Wheelchairs and Accessories<br />

CmER Mounk on ,ear 01 foreign or domenc automobiles.<br />

Winch lik chair into carrier Locks securely.<br />

Brochure from Chair Coder Pmdur~ Inc. Box 434.<br />

Goinesuille, Florida 32602.<br />

.&:;:lr,l i\%.r.HI A n.qg.,~l viblu ueh cle dnvqlal lklr<br />

",.,doom ,,.,,,"'! )h ode *. 8, ran p*s ,:>r , .s. .,rr.>.<br />

~o.>ru l>.6 r!.rn. ~*vl.,<br />

'1, !qru~..rt,


Travels 12 miles before recharging hanenes is necerrq Helpins the Hondicopped A id^ to M& D-IO~~ by the<br />

Single-handed steering m. Waterproof canopy is an op- Telc~hone Plonperi of Amenra. About 15nrho- derc.bing aidr<br />

eons1 extra. Monvfocrured by A&B Vehicle, ird,<br />

103 Sfourbndge ROO^, ~ ~ west MI~I~,,~s i 863 ~<br />

3UB. England.<br />

and device developed by vanour chapters of TPA Aids are de~<br />

5:s"ed for ~ ail twr of ~ dirabilloer ~ F~~~ from the ~ T ~ pio- I<br />

neea of Amenra. 22 Cordand, Sheat. NSW york. NY 10007<br />

Recent Publications<br />

id^ & ~ d ~ ~ BY uliula i ~ bbie t i HO~E ~ ~ ~<br />

ajdr. publrihrd by ~ ~ dprev f650hom f ~ ~ ~ ~ d<br />

Independence Through Enwmnmenlnl Conhol syrtemr BY<br />

DA Syminmon. Bd. O'Shea. J. Batelaan. DA. Whilp. 83pager.<br />

<strong>1980</strong> Types, urr, and ieleroon ol conhol ryrtpm. cart<br />

tiurnerr. lntereong rall~rtian oi rare r ~dle. $550 hom cana~<br />

dian ~ Rehabillhhon ~ d ~ Councml ~ ~ lor ~ the ~ Disabl~d. ~ one yonge ~ sueec d<br />

& Evans. ErLouer Rwd. Plymouth PL6 7PZ. England. Suite 2110. Toronto. Oniano MSE IW. Canada.<br />

Aids To Mob YOU Abk. A Canadian View of SeftHrlp Dovicer A ~roparal/o~~e~hnolagy ~mmsnt mnd Tmnrler io ~~h~b:~<br />

br Disabled Perronr By Wendy Davlr. Om. Include dlrecbom toflon. A fawinaong rolleciion of pmblemr rolved by WARi is<br />

lor conibuchng deuce w well ar tho= commerciall~ available included in this 247~page publication. a continuation prow3<br />

Spiml cover pwrback 114page. $6.95 lmm FredSammonr, prepared in July <strong>1980</strong>. Roquert fmm John Maair IMPART<br />

Inc . 421 Maple Avenue. Downen Gmue. Illino& 6Dh15. Project. 2203 Babcork Rmd. San Antonio. T~xw 78229.<br />

The Appl#ca~on 01 Techniml DemIo~menk to Physiiall~ Da Rehobllil*on Engtnee.ng: A Covnwinis Gulde A rnonogrsph<br />

abledPeopie By J-h La Rmra and Jew S. Turem Ways in deigned for munalon to demomuate me enertivener 01<br />

which Wr. bpewiimn, telephonw. otc. haw been adapted br orm5needng fochniquer in bmadening the rehabililation porribli~<br />

deaf and blind prrronr, problemi 01 mmufarmnns and market- tie olreusielydisab~d pe~ni. Aumlabh hom the ueioiirch and<br />

ing new equipment lnnovahve rids 117 Paw 1978 $3 50 Tmining Center, Stout Vocntional Rehabiliiation Insbhlt~. U~~MF<br />

from Urban Institute. 2lW M Sir& NW Washington. DC riry ol Wmin-Stout Menomoms, W~rronrin 54751<br />

?Om7<br />

Rerource Guide Rehabilimiion Engine** and Pradud Inlor-<br />

Bell Conodo Dlmtoly of Telemmmunicotion Aids for Dirabled motion. Derigned lor engmeonngand rehabilitahm pmierrivnaii.<br />

People Information an aids for all mrs of d'uabilitiei. $50 irom 49 page. Fme. Mth a reli-addressed lakl, hom Cleannghoure<br />

Bell Canada Cenm. 393 UnivewN Auenus. F1g. Toronto. on the ~andira~wd. ~cwmnont of ~durabon. R~~ 3030<br />

Oniana MSG 1W9. Canada SwBr Building, Warhlngton. DC 20202.<br />

~~&l~<br />

~embitur UICBC 408 N.E. A I ~ ~ hach. F I O ~<br />

The Couerup. Neckware lor the LanjngeMnlee ond Other 33457. It Is also available m slide and rarrrne teiormr. A sri ior<br />

Neck-Bieoiherr By Dan H. Kelly PhU and Pew Welbom. home carp is in prepamtion. For pnce of the and<br />

Excellent 98-page mource guide indude patterns, drrunngr,<br />

and direrhonr. Available hom Cailego~Hill Pr-. PO Bor<br />

publ!~~ti~~~, write to ma cenbr<br />

35728. Houston. Toar 77035. TAD Neuu A birnonmly publietion ol a goup duoiunteerr -<br />

p'of.rslonal engmeer;. Lechnic$n. and manufa*uren w h o<br />

Equemenlfor rheDlsobld ren.8 has iidded -era1 new bob.<br />

Far the liee la of the books (which ort about $12 50 each PIpollagel<br />

wnte to Equgment lorthe Disabled. 2 Foredourn DWe,<br />

Ponilade. Bnghton BN4 288. England<br />

piovide inlormanan and technid a.naancr Available horn<br />

T~chnral Ald to he Duabled, Rwal Ryde Rehabilsabon n-5~<br />

ial. 600 Vidoti~ Road. P 0. Box 108. Ryde. New South Wales<br />

2112. Au*aiia.


A*. WTherapy<br />

A,tThem~yv!ewwinbl Edited by Elinor<br />

Uiman and ClaimA Lev A lucinabng<br />

collecnan 01 outitanding a*cler from tho<br />

Amencan JaumalaiAnihsr~~u . . Of<br />

valueas .text andas a wurceoigeneral<br />

inlormatlon. 424pagrr. 200illurhanonr.<br />

$29.50. <strong>1980</strong> SchackenBaokr. 200<br />

Madison Avenue. NrwYork. NY 10016.<br />

VemoniCollegeolNowrh Univenily<br />

Mnnlpeiv~ Vermont05602 announrrr<br />

the mnrloi hom Gvddnrd Collpge of tha<br />

1S~monlhM.A. program in arttherapy.<br />

A Resoure Guide lo Hondiippsd<br />

Anlrlr. Thediieclov, basedona 1978<br />

Banias, Atti,"*,".,<br />

inads Out By Debmcomelilli. Another<br />

olfhe rupnbratiesol boakl~h on a$$<br />

bdinal bmf~n. Thlr muenthe hidden<br />

disahilides-ancer. diabefer, heart<br />

lung, Wrticfibr~ir, epi1ew. hemophilia.<br />

kidney, ormmr 50~ hom George Warh~<br />

ingion U.. RRR-ALLBPuhlicationr.<br />

182RLSheei. NW Suite 704. Wmhing~<br />

ton, DC 20036. Sendlortheheelutd<br />

publ?cahonr. hey arevaluable booil~Lr<br />

at small pncer.<br />

Anotheremli.ntsur~ofpublicationi<br />

at oldfmhionedpncesiiths heiPublh<br />

cations Ca(alogpuioutby Information<br />

Center National Easter Seal Sons&<br />

20<strong>23</strong> Wert0gd.n Avenue. Chicago.<br />

lllinaii 60612<br />

by Gini Laurie<br />

Edibon-1979. Box6. Depl885. Minnr Eart2lrtSveet, NewYorX.NY lOO1D. All<br />

aooiis. Minne.afa 55460 diiabiliner am c0"er.d and It iniludrr<br />

camernianning, eduabn, employmenf<br />

US Re-ntaw Fo"~, H. Stark<br />

and<br />

lram Calilomia proposed logirlation IH '-' lighir<br />

R.<br />

60271 ihalwauld havermenofcur~<br />

rencymmmedinvanourwayira thatthe<br />

ilmounicould beidentified by touching clothp.<br />

theramen<br />

PmdueforPeopie vlth Virion hobfern&<br />

Frsecablog homAmrnanFoundati0n<br />

la theB!ind. Consumer Pmductr Dppan~<br />

mtnf. 15Wcst 1687 Sheet. New Yolk, NY<br />

10011<br />

ORCHADASH which inEnglish means<br />

ANEWLIGHT iianewmss4n~magaan*<br />

in the~ebreu language. wteto~hs<br />

Jmsh Biallle InititubolAmetica, hr.<br />

110Ean30lhStreot.NowYork. NY<br />

Optianr. SpinalCodlmjuryondihe<br />

Future By BaqCoht. FREEhom he<br />

NabonalSp~nslCodln~unFoundatian.<br />

369ElliotStrerl. Nivfon Upper Falli.<br />

Maraihuiee 02164.152-page wppr<br />

b3ck An invaluable rollamon ofthe liC<br />

andunrkexpnencer ol50U.S. SCI lndi-<br />

vldualr. A uemure lor ruenone!<br />

T~I.IRehilbilitoli~" By G~0rgcNel.o"<br />

Wnghl PhD $32 IromLittle. Brown &<br />

. ,<br />

Giiedman. Ph a, and WdlamRuth.<br />

PhD This fmal reM"a1,hr camogle<br />

Council onChildren conrludesthaid>r<br />

~racdcalexamplcrol~-mloarer.rtc. ablsd Ametimnrarethetarrjef ofuncon~<br />

34pagrr 1979. Free (ram lnrhtukfor xiour rainland polltiraloppremionfhat<br />

in~orms~~nsfudi~~. 200~irn~~~u~ irol,.nmoredamagingta heir liver ha"<br />

Stmot. Suite 104. Falls Chunh. Vl@nia lheirphyiicaldliabilioe.. Anafhorhorrur.<br />

2204h.<br />

lor ovzryom' 525 pages. <strong>1980</strong> $17 95<br />

Imm HarcounBrare Jauanavich. 757<br />

ThirdAuonue.NeuYork.NY 10017.<br />

YourFutum. A GuideiorlheHondm~<br />

coppedTeenager By S. Norman Faingold<br />

andNormaR Miller 177pag.r. 1981.<br />

$857 1rornRrh.rdiRorenPxeri. Inc.. 29<br />

, ..I.', i... ,.,,


~ ~ ~~~ ~~~~<br />

Ganno~ Director GaUaudelColiego.<br />

Kendclll Green. Washingfon. DC20W2<br />

unlliupply thcaddr-eof the iollounng<br />

RehabB"e1: Con~bvtionsofT~hn0I~<br />

ow 0 De~f~ndHeonng~Imp~fred 11dlndi~<br />

"lduals. Exc~llenlsummay of b~oadca*<br />

teleuiiion, home leleuinol. tciephanr<br />

assistance deuirer, andwuiprnm~. ~ree.<br />

Ark lor <strong>Vol</strong> m. No n. A"li"1t211. <strong>1980</strong>.<br />

Rehabilltation Resrrch Indtutr. College<br />

olHealfh RelatedProI~#onr. U ofnor.<br />

ida. Gainmlie. Flonda32610<br />

The WodAmundYou NwrmagrvinP<br />

for hearing-impired henagam. Free<br />

homPre~CollogeProgmmr. Gallaudel<br />

College. Waihingfon. DC 2m2 Also<br />

free from Gilaudet: ThaDenfStvdentin<br />

CoIl~seandA G"!d* to Coflegdcccc<br />

Pmgm,nsloiDem15luden~1. Ibquarteriy<br />

magarlne. Goiloudet Todov cost $3<br />

per year<br />

NoaonolSuluevofCommunav~eri<br />

dentiolFodl*er AProlieolFar,lr.nd<br />

Raidenbm 1977 By RH. Bminmlcr.<br />

FA Hauber, andMJ. Kudla. 152 pages.<br />

IoriheMonnIly Retarded. 13rue Farat<br />

$ere, B-1050 8-1s. &Issm.<br />

ano~nrationwhichuoll xnd freeinfar<br />

manon upon recziptafartamp.d, rell~<br />

addrcrxd. lonoaovelooe W"t~t0Ah~<br />

Dncrrlnloma#on ssruic. T0U~h.n<br />

number: 800638~6694 hrall of US.<br />

axaptMayland 1800-492-66001and<br />

Almband Hauii 11~800~638~60701. In<br />

hmaaon on cancer, Rnanial aid, medical<br />

faiil~ber.nreuon6ananddelection.<br />

LouminsTwiher:A GuddfmForn~f~es<br />

ullh GendkDiromlem Organking parent<br />

mups, activities, helplulorganlrabonr.<br />

Free fmm NationalCloa"ngh0uio br<br />

Human Genetic Dl-. 1775 EaddeK<br />

eon Sweet. Rakulle Mayland 20852.<br />

Hunbngion" DjaS0~. Adj"jR jn<br />

Neumfw<strong>Vol</strong>vme<strong>23</strong>. By TN. Chm.<br />

N.S. Wexle~ AndrdBarheav. 848pager.<br />

Manone Guthnet~mslt "Anwentiairelerenc~uark<br />

iorphyilclana." 1979. $35<br />

IromRavenPreri. 1140Av~nueol (he<br />

Ama~ras.N~wYork,NY 10M6 Sendfor<br />

the 1ree bmh"r.and~witmyour<br />

phyr$cian'<br />

SomeFace, NeuSaund. ByC Rlchard<br />

Dean. Ph.0 and Barbara1 Maidel.<br />

C1~~rlywn~na"d~"ffffhh bbbkl~dt<br />

for lanjngeclomee. Fme 1mm Naoonai<br />

EasterSeal Socioiy 20<strong>23</strong> Wert Ogden<br />

Avmue. Chi- lUinoli60612.<br />

LawnpctomeeRehob~fitot~on. Edkd by<br />

Roban L. Keh. MS. and Fredenc L<br />

Dariey Ph 0 Proread>ngr oftheF8fih<br />

Layng~ctomee <strong>Rehabilitation</strong> Seminar,<br />

June 10~15, 1979, at MayoClinir m<br />

Rochater Minnesota. Aua!lable ham<br />

CoIlep~H111 Prerr, lnc.. P 0. 60x35728,<br />

Houston. Texas 77035~<br />

Re~oltl.Nationa1 lninhlierof Health.<br />

Bu#lding21. Room 8Affi. 9000Rock~4lle<br />

Pike. Betherda. Maryland 211205. Ull<br />

send ~PPCO~IOI of (heir prooared repa*<br />

onM5. SCI. ALS. $hoke. Huntington's.<br />

MD. Parkinson's, rpina biflda, epdepiy<br />

speech, healingandlanwagc drabikbei.<br />

SlC.<br />

I1 you hawmlgraine headaches, request<br />

bookletsand allrrofphyiinansuhoaie<br />

headacherpensl* homtheNatiand<br />

Mlgraine Foundation. 5214Nonh W ai~<br />

em Ave. Chlrago, Illinhi50625<br />

ThePre$ld~nt'sCommine~an Emplqmen,<br />

of the Handicapped. Warhingfon.<br />

DC20210. has three <strong>1980</strong>oublirahonr<br />

bimeilerandlorthreeof their loweek<br />

behueenclaiia. they workatthecolleg.<br />

in one of 65 diHeieniwrkaiem.<br />

Employm.nt<br />

If you would Ilk b be an anendant in<br />

Englandfor.ixmanlhr, withroam and<br />

board hmiihedand$17r woakpocht<br />

money Udte to steve Bunon. Sh.ltrnd<br />

inlamanon on ra1ay rang. and carerr<br />

ob)ecbue<br />

InieragenniM~o~gandFemds<br />

Recruit.<br />

err Arranation IMFRA,, Carear his.<br />

tance Center Box <strong>23</strong>962. L'EnlantPlas


Sstian. Washmgtan. DC20024. in lor ma^<br />

6on and r~lonalsewicethatunlilocate<br />

,ncermm, aqualtarlyn-le(h.rof prai<br />

B~airalutionsfor the rahabcou-lor<br />

Fro, ham Job Development Laboratow.<br />

Rehabllmtaoon Rerearch andTmraining<br />

Center <strong>23</strong>W Eyr Sweet, NW. #420.<br />

Warhinmn. DCZ0037<br />

InuesYpt~s~forn YO" I""@ word3 of<br />

varningaboutmaa oderichrmr. F~.S<br />

booklet hornConrumirlniomaeonCen~<br />

ter Dcpurment 5'X. Pueblo, Colondo<br />

81009.<br />

TheJobHuntofthr Dirob!ed:An<br />

~bmhySLudy By L. Medveneand<br />

5 H Akabar. Smdv buColumblaU.<br />

TODCOW a computer programming<br />

program, l>aioxpand.dibpmgram tom<br />

rlud~indeprndentlivingrkilllirainlng<br />

Bmchuroilvail~blshamTODCOMP, Rt<br />

4 Box 199. Columbia, Mmoun 65201.<br />

Anor~lry li'!lltrl%lil~iloi~!i hli,l>he:<br />

Olhlo Bar GrrdulIod n iuppi,r i3'.,il<br />

clarr fmm ldiv iil~vulm <strong>1980</strong>. ritmrna<br />

cum laudr lmm undi


the exchangeafrehabl!mtianinbmabon<br />

$loannual dues Memk~hlpinloma-<br />

bonfromHelgaRoih. 3107KoniSheeL<br />

Washingion. DC 20795<br />

Tschn~dlnfomation Newrk. 1725<br />

1Smei. NW Warhin-n. DC 2M72 Thr<br />

Psderal Emslgenw Managamen, Agency<br />

aperater this newoiksndisues hvllehnl<br />

ondertcdwbjeia, rurhaiSt Helen's<br />

uulrank eruptionand heatwaue/draught<br />

Free<br />

Intrm.tlon.l<br />

mrte new miormadon directoner fmm<br />

Canadian RehabilifationCounc#lforihe<br />

Disabled. Suite2110. One YongeSbeet<br />

Ibronto. CanadaM5E 1E5, areall priced<br />

a112 each, induding,m*age:<br />

Hauslns omdSupponSern8esfofo<br />

Phy.lcol1~ DisabledPewnr in Conado<br />

LlS~aged~rertorylisll aboul400organiladonsthalcollsclinfomation<br />

on houring<br />

and rpMres. ,979<br />

Rehobilltation Tnatment Cenesloi<br />

Phyrico!!yDiubledPenonr in Canodo<br />

73-page diieclory of about60 cenoer<br />

includes information onp~omamr and<br />

bcibhrs <strong>1980</strong>.<br />

fncomr Maintenanrr."dOiheiBenefit.<br />

forPhynra~~~DxobledPemons in<br />

Conedo. 115~pagr dirocfaryafrocirl<br />

rerun" and oth~rasisbnie mrmr <strong>1980</strong>.<br />

D~~bil~R~ghhHondbaokfoioI9BO.<br />

Guide to Income ben~fik. a!&, andrer<br />

~cerlordmbledolaila~. £1 ($250<br />

h0rnU.S )The DirrblliRi Alliance, 1<br />

CambndaeTenare. London NWLX I,,..',,'


arrpplacement equipment?" Jarkl<br />

Yoihikaua. 2700AtioAuenue. 5W<br />

S~ale. Waihmgton98ll6.<br />

Mentally Ill<br />

iniemmionolPsychimti~R~hhb~~ii66n<br />

Newiletfr,. New Free BiGmonthl". . Malor .<br />

emphasis on prevention and rehnblhb~<br />

tion. Publehed by the WoddRehabilita~<br />

60" ~ oc~ati~" lorthe Pnjcho~SaaUy<br />

Disabled. P 0. Box898. Anranis Station.<br />

New Yo*. NY 100<strong>23</strong>.<br />

;980:$4 lrom Nchonill ~ehabilitation<br />

A~~OU~DO~. 1522 ~ s~eer NW wa.h<br />

mgton. DC200O5.<br />

Mtocallaneous<br />

DeprmnenloiPragmmi. 94-mge rum-<br />

may ofcurrent HUDprogmrnr Augurt<br />

<strong>1980</strong> 1RerniedEditianI. Free from U S.<br />

Deplheniof Housing and urban<br />

Development 451 SeventhSeeel SW<br />

Washmyton, DC20410<br />

GuldeioPrrjcnplionDmsCcciS has<br />

been dirmbuted by the Depax+nentof<br />

Health and Human SeMce to 420.000<br />

ohvrioanr . . sndohamatis*. It .also hee<br />

toconillmeriwhorrquerf it from Pnnr<br />

inqand Publkation Bmnch. Health Care<br />

Hond~cappedFundhgDirecm'y <strong>1980</strong>-<br />

1981. Lists 400 hundatianr, araoatianr<br />

mdgovermentagenrlethalpmvide<br />

funds lor dr*bl.dpPogmmr ."dSprrnCer.<br />

$16.50. Rerearch Grant Guide. PO.<br />

Box357 Oceaniidm. New York 11572.<br />

Milo and Margaret Perrall, prolesslonal<br />

dog L.ainerr. Trainingmethodr foimak~<br />

ingday urelul9peopIe~lh~are wheel<br />

shiired, deaf and crutch~useo. $11 95<br />

lrom Alpine Publcationr 1901-FSoulh<br />

GarheldSDmet. Loucknd. Colorado<br />

80537.<br />

N"'xlS3on<br />

Mero~Numtion: TheNemPrammmmioio<br />

MonmumHeallh. EnemondLongeuity<br />

ByRlchardA Kunrn. MD. pwidontof<br />

the OnhomolaculaiMedlal saiew<br />

320 pa-% <strong>1980</strong> $12 95 lmm McGrav~<br />

Hill Boat Company. I221 Au~nueofthe<br />

Amonwr. NauYorX. NY 10020.<br />

Nunihonal con o/lh.Ph~sicarl~Dii-<br />

obi&. 50pa-r $6 SOImmPubliiationr<br />

ofirz. Research and Educ.tionDepa*-<br />

men1 Stiter Konny Inlbtute. 299 Chicago<br />

Avenua at 271hSVeel. Minnoapolir.<br />

Minnesota55407 Areourre lor health<br />

p'olasionak<br />

TheLeft Hand, lnc.. 140Wrrt22nd<br />

Smot. New York NY 10011.30-page<br />

caslogol3W items. $1<br />

LeflHondPlur. Boxl61, Monnn GGGG,<br />

dl,noism53 lopogermolop $I.<br />

JohnL. Quigley Jr, D.Min..Partoral<br />

Counrelo~ iC54 announcer Ihe openlng<br />

of hlioffvcr. lndivldual whotheraiiyand<br />

mamage rounrel#ng. Odord Bu114ng.<br />

Su1fo217, 141 Nonh Meiomrc. Clayfon.<br />

Miiroun631ffi. Phone 314126.6117,<br />

Adw"l"~Pl~~gm"ndr~~~H~"dico~~~<br />

Children. 32lager. f125hom Handi~<br />

capped AduenlurePlaygroundhocia-<br />

tion iHAPA1. FulhamPalace, B'vhopi<br />

Avenue. London SW66Ek England.<br />

l,'.ni,'..,n lli.c.",,i..nt,.l ;.I..<br />

."".) < .",", ,In. ,I .,,.*..\<<br />

, ""'l.~*T,.p:l. 1. .,,-.I .-<br />

r .., .,:,,,;. dl. ,j,~'.Z, .I,<br />

"+ ,. 19 ,. ., ,?,. , a . ,<br />

, , 2 1, , . I,,, . 11, ,<br />

i 'I. .I(.," . 1.. .I ..


925 Ch&utSbeet. Philadelphia. Penn-<br />

rvlvania 19107<br />

Cre.ti"glh.CorinqCo"9"9~,iii.<br />

G"#d~s"er~rM!n,*""uiith theHond~<br />

impped. By Hamld W Wilke, an<br />

ordained mlnirtor offheUnitedChurch<br />

Educaoon hr ChndanL,feandMirnon.<br />

National Councilof ,h.Chunher or<br />

Ch"*i" the U SA.. 475Rl"enldehius,<br />

Room 706. New Yo*. M 10015.<br />

TheRigh*~/PhvtimliyHmdijpppd<br />

People. An Arnenvln CiuilLibenler Union<br />

Hondbook. By Kent Hull Excellent re.<br />

muire book! $2 75inrludlngpo*ge<br />

horn AuonBmk. Ma$lOrd~rD~p~n~<br />

menL224Wert57ihSn~er New Yok<br />

w 10019.<br />

LwlRlphtrPnmerforLhhH~ndjcmp~d:<br />

InundOuloIlheClorrmom. By Joseph<br />

RobemandBonnle Hawk. Adown~ta~<br />

eaith, clearlywntkn hovkhpaienliand<br />

~mieisionab. $5 fmmArademicTh.ra~<br />

Publkationi. 20 Cornmarcia1 Boulouard.<br />

Nom. Calihmla 94947.<br />

Sciensr<br />

Rehabilbnnn EnglneedngSssiaty 01<br />

Norih Amencq 5401 KirkhamRoad.<br />

Susta 550, Orlando, norida 32805 Pr-I-<br />

denl JamerR.nuick the annual con^<br />

krrnceunll be heldatthesharofon<br />

WarhmgbnHoiel. Washington. DC, horn<br />

Augurt30LoSe~lember3. 1981.<br />

Manna Srimre SummerSchool lorthe<br />

Handica~pedi5an.XcitingopponuniN<br />

far 11th andl2LgradesWdonrr h rn all<br />

mar (herovnmi Theprainm inrludn<br />

deaf, blind and wheelrhaisdmtuds~.<br />

Thcrhame hr room and boudbabour<br />

5550lar the hue-eokniomamandfl- . .<br />

nanclalarrirVnro loco"eiih.caQ.r~<br />

available lrom he National Science Fouh<br />

daban. Wntr E.C. Kellecdr. 257 Brovhr<br />

Hall. WetVirginia U.. Mownbiun. Wart<br />

Vir#nia 26506. The rummpr piogiam is<br />

lawfedathaMatineSrienraCanror<br />

hums WallonilrbndSB666.6666<br />

Wanted: "Spinalcodinjured womw<br />

lrom theUS, to annuerrhoriqurrtion-<br />

wire oniexualvN andd'mbdmty lormy<br />

NalonaiTerkForia on LifeSaiet9and<br />

UleHandlmwd. PO Bvxl9W.<br />

Washington. DC 20036. Bmir mambe~ Sexasenaria"'<br />

rh!pof 525inriud~rnpusletkr lbinter- ArnencanGenamc Edumbbb5a05aoy,<br />

est~indudaemewncyevacuation. coder.<br />

imandardi. stc<br />

Inc. 5685NonhShoreDnve. Mwu~<br />

kee. Wirmn.n53127 ArkWilliam<br />

Eldchwtel. loo Baylrton shpet. suite<br />

200. Boston, Masachwamo2ll6. Free<br />

ca3ogoIiummer~id~ntial college<br />

Dmoramrin 5Ortahr Si3llmnximum<br />

Send hr theh~ePubbcaaoniCahlw<br />

hom Inlomation Cnntpr National Easter<br />

Seal SocieN. 20<strong>23</strong> Wet Ogdpn Avenue.<br />

Chicago, Illino~60602 Many ollheir<br />

publmwtiansarepnntad mSpnirh.<br />

PockaG"ldeloFedemlHeIpforIhhDYy<br />

abledPemn Flee. Inspanirh ORce lor<br />

Handicapped Indlvlduclr, Drpamsntof<br />

Education. Rmm3631,SulnorBuilding,<br />

330CStreel SW Washington. DC<br />

20202.<br />

The Smof Sfde dHondi


SafeH~~dlingoiDi~jngI~ju~s.<br />

16-minute lGmm 510renIdaltromSurgi<br />

cd Fom Libray, Dad3 and Geck DiShlb".<br />

tori. OnaCaspiSwet. Danbuy,<br />

Connecikut06810.<br />

SpinalCordlnjuy InlomolionDireMy<br />

Compiled by Dorothy B. Klng. 46pags.<br />

RoorevelfWarmS~"ngi Rehabiliiation<br />

Center Warm Spnngl, Gsargla 31830.<br />

Ljangol national and rlste vllormahan<br />

and srwice organizations.<br />

Shake<br />

CommunlcntionBreokdomno/Bmtn<br />

InjuredAdulir. By Helen Bmjda.Ph.D..<br />

speech palholajlit and counis10.. Clsarly<br />

wntfen lor diwblodandprol~irionalper-<br />

sons. 152 wger 514.95 homCaUege~<br />

HillPrerr, PO. Box35728. Houwn.<br />

Texas 77035.<br />

Norban Sanden. who harboen a lee<br />

I," "., ,,," .,,. , .,,, ..,<br />

, . ,, , , ,., ~,.


.<br />

omce 01 H~~~~ ~ e semirer ~ Office forCi"i1 ~ RlghUthatentmr~civll<br />

~ ~<br />

iafd tochildren, elderly lndlanr, nUaXX "h& laws in whooisandcolieg=.<br />

the Presldent'sCammitteeonMrntal The roorganlration explained Ui<br />

~ ~ ~ ~<br />

Rwrdatian, anda nawagmry, fh.<br />

Adrninirh-ation an Developmental<br />

DirabiliflMi. . Sock1 S~cutiy Adminisvation iSS1.<br />

iacial iecuny henem, aid hiamiliir<br />

delall in the bllounnghpr booklerr:<br />

ThlsirHHSlmmtheOmcr olPublic<br />

Aflsin. HHS. CammunicationrSeMcer.<br />

Roam618CHumphrey Buildng. 200<br />

Independ.nr* Avenue. SW Washingto".<br />

~ ~<br />

us physimlly mentlilyrn~renionlydr~<br />

abled. Ih aim li to lorn a national nomark<br />

with dependantchildmni:<br />

DC20201.<br />

Office IoiCivll Rightrforpeopleiened lnfioducin~ihe US. Depa~nent of<br />

by HHS pragrams.<br />

Educallonand G"idemEdP.04040404<br />

At the same time, revoral fmeiHEW<br />

p'omamrweremndarredtofh. new<br />

hornthe Offifflffl~IP~bli~ AJfajm. Deps*.<br />

men, of Eduiahan. Warhington. DC<br />

zoning<br />

De~amnenloIEducatian. Whilemostof 20202.<br />

TheMch~rlanPlotedonand Adumry<br />

the pragramr for drablad prprprprprpr are<br />

concentrated in tho omcp of~ducation<br />

SeMce f0rDe"eiopmrntally Disabled Clb.<br />

rrnr rewrlonedinitr May-bna <strong>1980</strong> new^<br />

and Rehabilitative SFNIC~I (OSERSI.<br />

Isnerihat "F!"e mentvllyretardedwomen<br />

others .n scattered LhroughoutLhe<br />

depamnrnl Theaddress is Walhingian.<br />

DC 20202.<br />

Theonnrioalomoramr .<br />

indude: . OfbreofSpecial Education, . Rehiili*DonsrM~Adminl~Aon<br />

.Nahonailnr6luleof Hsndicaaod<br />

The Public Health SeMca reornmendr<br />

Ihatalip~rrons betwenrL~weeband<br />

18 yeam of a* ha glum an oral polio<br />

~ccina, sxraptlorfhm~unlh uincer.<br />

l~ukemiaorlvmohoma. . . TheGnzea<br />

would liksiorapeatfhostatemenl by<br />

Dr G~ollrey Spencerof London in Its<br />

I978 uruc. "<strong>Polio</strong> m still endemic in<br />

Ainca, Souh Afnca. Ihe Far Ear, and<br />

rMldingt~plh,,inSL Cia$rShmorarea<br />

'family lor pumorso~adeedrerm~r~n<br />

Ulatonly aliovrnngle-larnilydwellingr.<br />

accordingtoth. Michigan Coun"1<br />

Appeal5 ''<br />

~ ~~~~~~d~<br />

Suite 8-5. FalLChurch. Virgn1a22044.<br />

One olthe canaanr by Bob Tanton. Jr, iC5-6 quadl vilurtmnng<br />

the book, A*ndann, Internmierr and Readen. Guidelinps<br />

€xv~"oncer of Readerr ol thr RehabOlBtion Garetfe Compiled<br />

by Glni Laur+e $4.95 including pos!sse. Rehabil~hb~n Gane,<br />

4502 Mowfond Auenue St. Louis. M~uoun 63108


ACCDAellon. Amenen Coalition of<br />

citizens Wlth Dlsabilihpi, S"ite201.1200<br />

15th Street. NW Warhinghn. DL<br />

20005. $5.<br />

Achlewment 925NE 122ndSt.. NO&.<br />

Miami. FL33161. W lv $3.<br />

TheBurnblebec. 412 Woodwad Bbd.<br />

Pasadena, CA91107 Qmly $2.<br />

COPHBuIlehn. 1627DebomhAue.<br />

Rockford, KG1103 $2<br />

TheDeolLuthemn. 3743PalmSt.<br />

SL hub. MO 63107. Manthb. $3<br />

Galiaudetradoy GaUaudptCollrge.<br />

7th &Flo13daAuo.. NE. Washington. DC<br />

20002.33.<br />

Theindepndeni 2539TelpphA"s.,<br />

Beikeler CA947M. Qmiy $5.<br />

LPANewr Linl~P~opleof Ampno,<br />

9OaMowDr. Gleenulie. PA16125.<br />

Bi-monthly $7.50.<br />

TheMainslm. 861 6thAvs.. Suitf<br />

610. San Diego. CA92101. Monthly $5.<br />

Nodono1 Hmhp 32Marmm1DiDi,<br />

Loudomnlle, NY l22ll. Monthl~ W.<br />

Neu W0,ldlorihePhYriml~ Handj-<br />

capped. P 080x22552, Sacramento,<br />

CA9582 Manrhk $6.<br />

Pomp1eg;oNeus 5201N 1W Au..<br />

Suite 108,Phoenix. AI85015. Monthly<br />

$5.<br />

U.S. Periodicals andNewsleffers forthe Disabled<br />

FreeDisabllify Grow Newsletter$<br />

ThSAMP National AmpuiationFounda<br />

tion. 12~45 150thSt.. Whifesbne.W<br />

11357.<br />

ALLSSOAN Arnyomphr Lahralscle-<br />

rosiiSociehjo1 Amanca. 15330Venhlra<br />

Biud.. Suite315. Sherman Oak, CA<br />

91403 QmIv<br />

Aithr~w~or.~ohoh", 106Herla~<br />

mar St.. N. Bellmore. NY11710.<br />

TheBmllieMonitor N.tionalFed.ntion<br />

of the Blind. 218 Randolph HatelBlds<br />

Der Mo~npi. IA50309.<br />

CRDNewr Commiaeeforthe Rishnof<br />

ihs Disabled. 2942 W PlcoBlvd.. La3<br />

Angelpi. CA9M106.<br />

Ftiedrelch'*Al~Gm"pj"A~"m.<br />

Box 11116,0a!&"d,CA94611.<br />

G.iia"deiAl"rnniNewsieheheh Oliiii 0'<br />

Alumni& PublicRelationi. Ga1l.udet<br />

College, 71h& Ronda Auer.. NE. wash^<br />

inglon. DC20002.<br />

SpinoBiPdeNciur 229SmytheDr.<br />

SummeMUe. SC294S3<br />

F- Pedodlcals lor*= Dlsablrd<br />

Cnmder United Cerebral Paby k c .<br />

66E 341hSt. New York. NY 10016<br />

In TheMainmmm. 1200 15rhSt. NW<br />

Wa5hinglon. DC20005<br />

RehobBnel. Rehabdilation Rerearch<br />

Innilute. BoxJ~155. Healh Center U. of<br />

Free U.S. Go=ezmnmt Publicdions<br />

ci"Ser Ld. Nahond Wmmdn<br />

Center iorihe Handtwpped. Box 1492.<br />

Washington. DC20013~<br />

0fdIedUS.A. llom~rlyP~~manc~1.<br />

The hesidenfr Commtnii in Emp,ww<br />

mentoFTheHandica~4 Warhi"*".<br />

DC20210<br />

in10nner m ce a1 Human Development,<br />

Rohabili~tionSeMcerAdmin.bbon.<br />

De~amnentofH..llhand Human<br />

SeMcei. Washington. DC20201.


Watch Our Words<br />

1981 became a year of unique potential for all who are The Rehobii*ation Gmerm has ahayr used the words<br />

disabied when the United Nations Geneinl Asembiy disabied/nondisobled, rather than oblebadied/dmabied to<br />

proclaimed 1981 The International Year of Dirabled emphasize the importance of disabled pononr by iubtiy<br />

Persons INDPI, with emphasis on full pernipation, realigning pnoritier.<br />

integration, and equaii~ Handicapped lingen on in the names of many older<br />

The name itrelf is a timelv omen: The Year of D'ksbled orqanimtions for the disabled and its use is ta, commonlv<br />

iidivldualr and organlrationr.<br />

On the facing page is a good example of the value of<br />

leadership by an individual duabled person. Thlr pdcular<br />

intemretation ofthe IYDP aims andabjedveiwas effected<br />

by Edward V. Roberts. Director. California Department<br />

of <strong>Rehabilitation</strong>. who ir ouaddoledc . . - because of rsioira~<br />

tow pdia<br />

If ail the nine commilmenh listed under Affirmation of<br />

Human Rights were accomplished, there would indeed be<br />

a iundamental change in rociety'r attlhdn. In that Utopia.<br />

amtudinal barnerr wouid be eiiminalrd. As a resuit<br />

disabled people would be undentood and accepted as<br />

~ ~<br />

human beings<br />

But until that Utopia is at hand, every dtabied individual<br />

can help make 1981 the stan of the brdng down of<br />

altitudinal barners that are the major obstacle to attaining<br />

there fundamental human nghts.<br />

64<br />

tudin.1 baniem than by thdr disabiUtier<br />

GENERAUZMG IMPERSONALILES Phraner such ar "the d=-<br />

abled" and references to a peiran ar a disability are de-<br />

humanillng. Instead d using "the disabled." say "papie<br />

or individuals or persons with dirabilitier." Instead of "she<br />

is a polio." ray "she had palion or "she war disabled by<br />

polio.''<br />

NEGATlVElMAGn Many commonly used phrarer expressa<br />

demeaning altitude and reflect small expectation. lrotead<br />

of "homobound work." say "home~based work." Instead<br />

of "wheelchair bound" or "confined to a wheoichai?<br />

or "rermcied to a wheelchair." ray "uses a wheelchac<br />

or "wheelchaired by polio." A wheeichair is a means of<br />

locomotion. not a hindrance.<br />

A person who has a chronicilong term dirabilihi is not<br />

,.. I<br />

,,<br />

or "ricP' or ''contagiour"<br />

A perron & a "patient" only when helsho is armaUy<br />

being treatEd. Outride the hosp!fal, ovtride the dacfor'r<br />

office. one is a penon, not a "patient"<br />

demeaning. prejudicial canceptr, continue to perpetuate people because this we mggerr the demeaning .nd inac~<br />

negative altitudes and correrponding dehumaninng pat^ curate opposite, abnormd. Lo dextibe disabled peapie.<br />

terns ol response and expectation.<br />

~rpcia~iy demeaning are the qua1i51ng phmres. "da-<br />

We should all watch our word! and exert influence to spite his disabiiih/" or "although she is disabled." Parallel<br />

conedorchange the words lned by the media byrendlng<br />

a postcard or mahnga telephone call every timeany ofthe<br />

compenronr wouid be "derpite ,he fact that she li a<br />

woman . . ." or "although he is a (race or nationalityi . . ."<br />

following or similar pejorative or "No-No" wards or<br />

phrases are used in the newspapers or magarin- or on<br />

Even more demeaning and obnonous are the words<br />

that im~ly that because a panon v disabied, heirhe rr<br />

radio or N.<br />

DISRBLEDmOWT5ABLEDiWIWPED. If iS important to<br />

asexual. does not have the same sexual impluse~, drives<br />

and dsirei, the same need to love and be loved.<br />

note that people who are disabled now choose the word OVER-POSmVE IMAGES. Almori equally dehumanmg are<br />

disabled when thq innuence the naming 01 an organk~ words that put disabled people on pedertali by labelling<br />

tion. such as the International Year of Disabled Persons, or them with super-human qualitier. especially courage and<br />

when they choose the name of organlrationr, such ar the goodness. Disabled people do not belong on pedestals.<br />

Amencan Coalition of Cihnr with Disabilities or Disabled They make mistakes. lore their tempen, laugh, frown,<br />

Peoples' International, which are nationai and international<br />

coaiitionr of + typ- of disabiiihei.<br />

hate, love because they are the rame as everyone eke -<br />

human. G&J<br />

REWLLITATION GAZETTE


is to deny our own humanity<br />

hos:ceriainfundamental human fights, the Callfomfa<br />

State ~ ~ eof RehabiHtdion n t andHsolUl and Wel-<br />

&=Agency hereby meke the follewingmrnmihnenb:<br />

Topromate independent living.<br />

.<br />

Tolme equal employment opporhmities.<br />

To.d@vslopa banier-free environment<br />

Tog~amnhe aecewto public facilltiesand<br />

transpottation<br />

To prad~ the nec&ay suppoIth,e sovices for<br />

independdt Ilivlng and employmentopporhmi$.<br />

.To endihewpegated education ofehildrenwi<br />

.<br />

abuih and to insure a h e and appmpiide education.<br />

To we the right of personswith diiuities to bear,<br />

mise and adopt children.<br />

To secure the @lit to participate in all aspects of the<br />

polltical proceni.<br />

To promote affordable, integmtedand aneesible<br />

housing.


Avsilebte Back Iesuee<br />

Donatloopawpg: ' Addap c d u n ~ e ,<br />

S.mframdhbkBinWua14 .<br />

WW from~lmndmbldBemN and ~ W N<br />

PhB@w&mdhgp~orde~ 75C USA, $1 ford@,<br />

I n ~ r n t h e & ~ w @ e y 4 d & m W m B m @ t . .lIC I<br />

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e r m p @ m ~ ~ o f ~ e I ~ m l e q ~ d ~ I n , m<br />

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