Rehabilitation Gazette (Vol. 29, No. 1 & 2, 30th Anniversary Edition)

130 Pages·2010·24.64 MB·English

kd6pmd6nt Living
30th Anniversary Edition
REHABILITATION GAZEITE
Vol. 29, Nos. 1 and 2
Edited by
Gini Laurie
Joan L. Headley
Wm. Michael Mudrovic
Gazette International Networking Institute
Saint Louis, Missouri
With Gratitude
Special thanks to the forty contributors who have so generously
shared their experiences to provide us with this retrospective and
introspective account of their rehabilitation into independent living.
Copyright Oi'lR9 by Gazette International Networking Institute
iSSN 0361-4166
tiazette lnten,ational Neworking institute
45112 Maryland Avesue
Sainl Lnuir. Mirvlwi 63108
USA.
All right5 reserved. No par1 of this pllblicafion may be reproduced wiUiout the prinr permission of
Gazette International Networking Institute.
Printed in UleUllitedState olherica
Deigned by Sheryl Prater
From the Editor To celebrate its 30th anniversary, the Rehabililalion Gazelle presents this
extraordinarv collection of life exoeriences written bv individuals with a
disability ~ d sotf t he 40 writers have been disabled more than 35 years, and
many of them are ventilator users. They include polio survivors and
%- individuals with other disabilities.
Their experiences were written as guidelines for professionals and
' :;w;-*R&;.,, *" ., other individuals with a disability who seek to learn how rehabilitation
: ,:? *<:.
: :&@$? '*I ,. efrvoomlv tehse irnet.o" independent living, to learn how these individuals "got here
They recall and analyze the factors that contributed to their success:
(1) support systems - family,f riends, attendants, and self-help network
(2) education and employment; (3) equipment - commercial and adaptive;
(4) transportation; (5) participation of vocational rehabilitation and other
agencies; (6) creation of disability rights; (7) travel; and (8) hobbies and
recreation.
The story of the Rehabilitation Gazette is interwoven with my life.
Because polio caused the deaths of two sisters and a brother, I have been
involved with individuals with a disability since 1949. During the decade of
the 1950s. I worked as a volunteer at Toomey Pavilion, one of the 16
regional respiratory polio centers. Alter the centers closed, I started a little
newsletter, the Toomey j Gazelle, in 1958 lor the local polio survivors. The
newsletter evolved into an annual journal, theRehabililalion Gazette, which
includes the experiences of individuals with all types of disabilities worldwide.
Because of these life experiences in the Rehabililalion Gazette,
thousands of other individuals with a disability have attained independent
living through rehabilitation. The writers and the editors hope that this
collection will be equally valuable to Ule present gcensera=tio-n -of
professionals and individuals with a disability.
30th Anniversary Edition.Rehabilitation Gazette.bl. 29. Nm. 1 and 2 3
Jack Geuskow .............. 34
Uniuerslv profmar Reqistered
psychuloglrl. Aduocole Hosbnndand
lolher
Polio.Ventilator user.
Lawrence C. Becker ......... 8 mIv1aio . S&"utiela fGar rousvere.r ............. 37
College Profesor. P1~;l~soplreEr !hicirr
Polio. Ynfilator user. uni"ers;vpmf~orW ile
Charlotte Becker ............ 12 mRloiob !ekrntli laElo. rH usitezr. .............. 40
Llhroria". Lolorenrei uiife.
Bud Blitzer ................. 14 f;nm3"urm"nercn ,a rgrepnot;. ,M,nuosni.c feach~ra nd
Rr,;red b"r;"essmon Ma"e-lrumpll arthritis.
Polio. Yntilalor user. Sheny Hurst ............... 42
Doris Brennan .............. 17 blunteer elementory ,1111,er.
Aduocore. Founder of independenr buing Polio. Ventilator urer.
ren,e,. Writ",. Casslwin .................. 46
Spinal cord injury
Ida Brinkmaa ............... 22 Edllor The Disahiliw Rag.Aduorale
Polio.
wile, molher, grandmolher blunleer Judd Jacobson .............. 49
mlioV entilator urer.
Richard Daggett ............ 24 BHuussbinaensdm. rao. Ownerofnauel ogcncr
duoc cote blonmer Spinal cord injury C5.
Rlio Ynfilafor user. Dick Jaskela ................ 51
SoleyDietz ................. 27 Teacher. motoqrnpher
wife. lh1uoteer Rlio. Ventilator user.
Polio. !knti1ator user. June lsaacson Kailes ........ 54
Gloria Finkel ............... 31 ~irectoro f independen, hing center
Wife, mother. ~rondmofherB ookkeeper Adoacob w;ie
Polio. %"tilatar user. Cerebral palsy
Rehabilitation into Independent Living
Todd Keepfer ............... 57 Vera Overholt ............... 83 Roy Schoenfelder .......... 109
Teacher Hlrsband ondforher Elemenlory rdrool tearher ortic* manager Arcounro",.
miio. Yntilalor user. m!io. entilator user. Wife and mother
Audrey J. King .............. 60 Mona Randolph ............. 85 miio. entilator user.
Diane Rice Smith .......... .I12
Psycharqirr Adoorale klunfeer
Polio. Yotilalor user. miio Yntilalor user. Peel Driuer cor luirh WI-canmlled
steerin+
John Leihold ............... 63 Susan Ray .................. 88 Polio.
Alforney Aduocole Writer of education01 ond pr~m~I;omol Mary Lou Spiess ............ 114
m1io. moterids Aduomle
Bente Madsen .............. 66 miio. *"tilator user. ATduusorc Dolree.r s designer W;fe and mother
Thomas W. Rogers .......... 91
Aduocole. Polio. Ynlilator user.
Muscular dysrrophy Insurance and munral funds rolesman. Joyce Ann Tepley ........... 117
Lynn Martinka .............. 69 Polio. Yntilalor user. .social wrker wire
Retired b"5i"eu oCco""I0"t. Rev. Robert J. Ronald, S.J. ... 94 user.
hli0. Jerud m;S5ionary pnesr;eT,. Ray Youdath ................ 121
Karen McKihhen ............ 71 mP1hioy.Pllvinsp uRteue.b enfeld ........... 98 hrokllhuesrp.o apnedr cgirrocnlidloptoiorne nml onoger Hurhnd,
Eng1;sh proressar
mtio Yliialor user. Avaciore prorcaor miio. Yntilator user.
Susan O'Hara ...... 74 RDiioo. ttie Santa Paul .......... .I00
,:,r,,,rr,6,<, rtcr l.,,,.<,~,rhf.l~\abk.J
s,~d+r,ic r..s drnc 6. pr .c:rum Employee of or,,,a,io1 firm.
mii~. Amyotonia conqenita.
YukikoOka ................. 77 Walter Sawyer, Jr. .......... 103
Farmerteacher Inlernotionaloduocare Income lox preporer
Polio. miio. Yntilatar user.
lngolf Ostemitz ............ 79 Clair Schnitz ............... 105
Conrulilng ps.v~hoIogii~A.d uocorr Tutor
miio. mlio xntiiator user.
30th Anniversary Edition.Rehabilitation Gazette.%l. 29. Nos. I and 2
Susan Armbrecht It is not easy trying to figure out how '"bounce" back alter a particularly diffi-
I,a quadriplegic with respiratory polio. cult phase ol my lile, such as the death of
came to be living by myseil in my own n.y tlluthcr, wai no1 a1wn)s iwllt ur $,as".
Phone saleswoman. Uses
aoartment. and what factors and lorces 1,811 1 <Id1 1 Nr al. lhnvs uur owl, v.nys ul
voice-operated computer. have brouqht me to this mesent stat~e~ ~o f rrlllmlne to a more sl.lble stale. l,lll wc
Polio. kntilator user. t#uJepcn<i&l,ceT htw aresome haw do it dif&rentiy Ih ave never been one for
laclorr whtch haw helped me to ia<:ll~evr
m) flrrstnl lndependenre.'l'l~r.<ra rt.
"There are some basic adi~!,lab~l~aryn d aswrt.veur<s. balnr,ce " >.
factors which have helped ,11111 i>.)~nc(.r:o pinq i ~rlt.~~ll~niqc . with my need to be oi& e qo constantly
HCF.(!I'S. (11 cnurar (.(,IIIIIIIII~~su ppurt and I hsie alwn)~Iw en invol&l in some.
me to achieve my present $l~~'lnllcfreo m ur~~~~flrrrrnld~io aln d w,rl nl work. ire it sell.ll$ tu>ay.vrltrh.
independence. These lillllll\. Chrl~lntits~rt ls, anti l,rcrirluly tt..~.l,la,~~
~einag gregarious and mial person s31rs. 1 C,~IIIIII~ b~ #dl1.1 181 .d11)! awl 1 lvsl
are: adaptability and by nature has alsa been very helpful in lll.~Illl ti laturul drltv tu be Illreracl.ng
assertiveness; balance and utilizing these qualities. From an early w~chI III.w ~tldha s .%SO "cen a malor
age Iw as brought up, though severely fnclur my prcccnl independence.
bounce; coping and disabled, to be taken into the communih. hlg having to dral wall! lllr in\al:ous
challenge. Besides, of argl rocounlet wllitt rvrry uther "an. latr effeclr ol 1pol.n b.8, Ibruugru 111111 &).a?
course, continual support #l,+abledr b~lcwi #~i<11i" muther C""W st,enqt,, <,,d,l,<,l,t,i I ,,;z"c! I0 C<,l,t.
clraqqcd" nlr Ihatl. rl dt,wn wtth slrl,lnr- 'The rhalleugc 01 n.Icr.u$ m" ik,ng-anncl-
and guidance from tlve 1,r;a.e~ hvarl-xu-lwt,e vrryuitrrc $ 1 ~ ~ndc.3 1.v rwtir>t.r,s .lcl# as eetlne oul of
wonderful friends and went I was thus ik,rrrd loem~~~itn~d ~~lmc?~ irro n lung in the morniG, norto
ndiq~~t ~~ytsr,u allll kinds of proi,.e and
family " \~lll'!tluns tiring an ascrrlivc iwrion
ilrrsell, she tauqht me not I<1,% nlra~do f
<peilklnSo ul or finding ways lu JCCO~. work so that Ic an function less fa&gued
plcsh what war l.?nln1 1 lhnve always in the evening. Ia m presently utilizing a
nlrrdrted will, I>CUI Ik whuprecunr tllac voice-activated computer system which
I at. cmahl? (>~Io :)k.od~cc ~s.on$an d does my writing far me, thus saving my
using my mouth and 2ndt o make mv limited left arm.
neeis known. For me, variety has always been very
Ii ind that my A-B-C's are often working I8nlurlnnl- * helher it br imd. muwr,
in coniunction with each other so no one ur allendant-. I preq~nlvl> ilvrl tsur <l~llrr-
aspect takes precedence. Learning to~ ~ 1,131 allcndmts who ror.tle illrc~!qhoulw y
Rehabilitation into Independent Living
week. some being around lor my work input into helping nlher persons w.th
lint*, vthcrs coiely lor my play time. I alw d~sabilll~elrrn <lt heir own sell.dirrcled
llilve runsclou~lvd svelourd a back-UD lives. I1 seem%w ry oalur.,l fur me lo run
system for tho& wonde;ful occasion; my life, but there &e times when i have
that we all know about. Adaptability has t~;e<lcd gwlat~rcIh nrugo lhe ">are0 1
played a strong part in my not going liviu< ~~~~lr~rI'n~n ~~"~nsltrannlllyll rnyn n-
totally crazy some days. A great deal of inc Iron. c ilter\ !,ow to manave both
mv time is bv necessiw sDent in organiz- myself and my world. l have &ays been
ing and keeiing track bf my pramatic "ti to ;ask lor all tI8t. Ihrll, I can qel,c.lher
wclrld l.#kr,d o 1 need 113 do bnndr) ' Iron!l people ur ox~nclerI heed all
Whali- lor dinner lomnnow' Whc.'s qoing IllesUOarrl 1 can e'l.
10 wash mv llmr Thursdav' So I value It has never ackrred to me not to be
ah
highly my"plav time? I continually in charge of my life. Id o value and need
,,,l,crs' ,,,p,,1. nut ,I ,call" IS #,by lhf" r,,,
dval.nq w.lh nnn. ~n many wavs,lh~sc an
be harder I ulr~matelvh ave !he tola1
very wise person once &id, "It's not easy responsiblily It hink ihatb what indepen-
having a gwd time." But Ic ertainly Q. dent living is all about. $6
Life would be boring, if not useless, if I
didn't do so.
It was a gradual progression from living
with my immediate family, to living with
my grandmother and brothers, to just my
grandmother. to kine on mv own. Durin"e
ihese stages I graduaiy hadio learn,
often by necessity, how to hire and
manage attendants. It is a fine art hying
to get someone to do what you want and
have it be a pleasant experience for both.
There is nothing wrong with a little psi-
I:vrty nlut~valedm an!pulal~on.
I Am 1,rewully cm lhr lr~arral wl have
hpcome nrlivrlv ir~uolvr<IIlI inv reulunal
independent li$ng center. It h& b&n a
source ol satisfaction to feel Ih ave some
30thAnnivemary Edition.Rehabilitation Gazette
Lawrence C. in one incarnation or another. Gini's very briefly In August of 1952 1 walked
magazine has been an important part of into the hosdtai in Hastines, Nebrash.
Becker my liie since the early 1950s, when the wlth uhal l;nled nut to hra qrvrre rme
Toorney j Gozene was my favorite among ol l!igl>-q)~#[p~oiltioi l ya rm- l.o~lc<ll~ rst,
the newsletters circulating h mh ospital then mv rrs~,ira!c,ru tllt,svlo. lien tnv
College professor. to hos~italI.n those davs. the magazine
Philosopher. Ethicist. was a iong way hrn its current &ry but ot;l CIlIh r rt,sp~ralon/r ~.hablhtat!on
Polio. Ventilator user. Ir ead it eagerly. When it comes across t'rr>lrr at St. Jurrphj liuip~lan Omaha
my reading board now, it goes on top of Ihnvlny relained the uceol my irgs(hu1
evervthine else. nut my arms) nncl ennuqh ;arr-.<orv
"My family always assumed 6 e~ rioritv1 g ive to the Gazette would rnusrles to 1,rc~aIl.c"I $ trly own clur~ttgth e
nlrpri<e my i;:er;ds. l thlnk,us ttua.h a< il day We a wt i>uughlt hnl I had ny.l~~wd
that ifI lived I would have a surpri$e~m e tor lhr p~ tl>.rty-stxy eas enmlr(t8 strmngth lu slrrp w,thotot 3
full and productive life;t hat I I~avlro uehl hard aealnrt Iwlne ~rle!lr~- rQYl>lralOrb, ut that turned cut 118 bc false.
~hieem onths of slee~am ea convinced
I would go to college; that I
man, philosophe;,'teach&. husband and me to stop lying to the doctors and stop
-
would find a way not only so forth as hard as Ih ave fought arranging to have my blood gases
to go to college but to have against the limitations imposed by my cheeked when they would be likely to
bodv And mv insistence on excluding the Iwk reasonablv good. (Fifteen-vear-old
a career that I wanted. " mo&obvio& fact about my liie from boys are a cunning lat,especiaily in areas
?very ~p!tl>ln# lfirrti,tion nime has %,me whcre lhey have only n vnqr under-
uf the i.llvc$ 101t le~~~~nOl.III ~ti,?o t#i"~s ide slandlng 01 pllysinlo$y, 'iu I urlll hack
and on Ihvuuls~JrS o mc~chu s. inrl. into n <heit rrso$rinh>fro r the ntehls. and
that aseverely disabled friend once that hasnot changed over the y-ln
accused me rit ryny tu pass" Tl~ar fact, the only major physical changes
remnrk slili slinqs - ntrl unly because since 1955 have been a gradual increase
lhr < (large of sell-deception ic hard to insbenglh and stamina until perhaps
lake. hut nlw IICL~tlR su~ddSenPlv illumi. 1971, when Ib roke mv femur in a fail, and
notrs lur me !It* ;al,it!rd~ly of my w.llking a Rradual decline in the clrenglh and relt-
around arms alu~ngl.~>I,lr(e. iilh.rtr: liken ahilly ol my ieq ~PI>IlVl? mWid 7I0Ii
lroq arttnq like 19i2 wasa ivq g.~.cl and micl 'X~ls.11 3 1'184 1 hc"u ;t~lI rl !we it
yenr. wheelchair intermittentlv, far excursions.
li,r the record. 1452 W ~aC "c ry bad
year lor an*. except that I suw~vedit Ilk
a ldrn~~ka8rr ~0l1 610rV,and can be told
Rehrhilitstinn into lndelpndmt tiuino
thee-wheeler for trim around the in that other world, but nowhere near
campus, and a (foot--powered) EM as happy,
Companion chair for use in the classroom There is no secret to lhis sort of
and for travel. A wheelchair is safer lhan success-without-arms stow. Evew reader
walking alone, is less tiring, and restores of the Garene knows that ihe ingkedients
some of the mobility and independence I are f!rst. second. :m<ll i~:t~ r that
Imd from roughly 1'15- lo 1'174 Olhmrlse somchow adlusls luvtngy to IL~ha d lurk
Ih aamrd einr lghmand e 1v.erra l(tlI~a ,.an n,d . +a~ ll,, rwoulrek~ltlwqd rl azonnds r wewidleu,t e&ldv Sth~eLirOC e xLpIUe LckteaIetn b nthse oirf ehaocrlh-
Hallins College, where Ih ave taught other high. My lamily simply always
ph:loulphy Z#rlre1 .81,5). assumed that if Il ived Iw ould have a full
l'l.*n.n rr llbree 11t11,4< al U!e hear1 and productive life: that Iw ould go to
01 mv I~IIi!ln cl I w*, iltlvt~~SdI ~O~CIVeo ileee: that Iw ould find a wav not anlv
mainst ail a1 them: philosophy (it;&ld to mik; a living but to have acareer &at
~r&vo~sha nd dv&a mr),iriarhtng I wmtltrl Hl>iktp ollo Itad changcrl war
(thrw was tu! much d scrmmlnatlun Ills w:ay III wl!~rIl w~c ,!>.<lh av,, !u work all
aea.nst the handlra~oedla. nd marrlagc that OU~l.h e extt.nt tu trlllrh I woula be
(;iw ould be unfair id anyone ~oo~is"h dependcnl on tlem, and me decree ol
enough to agree). l list those in the order dlllirulry 0111a llThcy cup4 wtth lhis in
in which Ii gnored the well-meaning a wily tltitl wac larqcly invls.ble lo jute and
advice. It doesn't seem possible to say vrm1r.l an environment in which lherr
which has been the most imwrtant. If I wvreu't a8y rxcuws available to utr fur
had done what rehabilitation psycholo- dolnq le% than wh;lt sa r.rarly ~wr$$l,le.
gists and some friends advised. Iw ould Mv mother, in parttculiar.I tad a!# aslun-
now have a J.D. rather than a Ph.D.. a ~shinqn mnunl ol patlcnce and gubd
oarhlershio rather lhan a orofessorshio. cheer. Site rrraneed lor me to have a
Ada fam'in the country 'rather than i conventional life:adiusted lor the lack
house in the suburbs. Chadotte would (if of m s .
she remembered me at all) lhink Iw as My mother's resolve weakened a bit ilttr~rlax~!Isr lorr she quite grasped the
sbpid lor never having proposed. Iw ould when it came time for me to go to gradu- risds I nevcr clod 6mm1, !laem I just lmk
have travelled more widely, but Iw ouldn't ate school. I'd lived at home through thsm, mvreur less bl~ndlvF vrrythinc
have had the luxury of sabbaticals. I college, gnlten ~radualele llaw<hips, wollted there. and almurt evrrytltl!lg
might have written contracts for books. enrollrd dl Ill? lllliversily #,IC htcaqo, and worked cmrnthly - as it doll in ~urlnag
but probably not the book themselves. I Ihnaml~in lcmedlnrss, lound a dorm ioh and slarlina out a* a leachcr. I
Iw ould. Is uppose. still be 49 years old room &d several students to be my screened out ti& unpleasantness and
30hAnni~rraryE dition.Rehabilitation Gazette 9