Next isrue will be Volume 25. Wili you help ur maks $$$$S. he pnce d the back herhas been reduced to the twenty~fiffhanniversary irrue the beit ever7 We'd like encourage new roaderr to diwover the wealth of inlorms~ to do a bsg intemationai "Then~And~Now"lealure on your ,., .., ,,.,I8, ,,*,,, 3.: .',~,,., > . .,. ,, , .,.. liver over the lasf 25 years . . . with photogaphr and ;.,<.. , . , .'I, "Rmwn Bag" appeal for iundr Engllsh representative. Ja Sandford ir continuing to to help ruppon the conference. heip the Gazette in Engldnd. You may send your payment by cheque or Portal Order to MoJ.D. Sandiford. 55A Your warmth and generosity are mica1 of the warmth South StreeL Havant Hans. England PO9 1BY Special and fellowship that pervaded the conference, as G=&e price off1.50 hom disabled individualrand r3.00 from all readers met for the first time other readerr whom they atheo - plus 50 pence postage had "met" on the pages oi the Gazette. "Gi"i and the Gazette.“ rays one parkipant "have been the glue that Recordings. The ioiiowing sources have superb colkc~ held the polior of the world together for aimosia quarter of eons of boob and magazines on open reel or cassette. a cenhiy." including most ol the back issuer of the Rehobilitolion G-Ite. Both are responsive b new requests horn thore There war sadnew too. Sue Wlamr, a very rpeciai who are blind or physically unable to handle book So Toamey and Chagnn Falls Mend and one of the early if you need this issue recorded. get m touch with the members of the Gozelte rsii, did of a hearl attack the Johanna Bureau far the Blind and Phyrically Handi~ week before the conference. She war excited and happy capped. inc. 30 West Washinnon. Chicago. lllinoi~60602 about anending the conference as a representative of the or the Division far the Blind and Physacally Handicapped. Vermont Center far Independent Livmg, and look~ng for^ Libray of Congrerr. Washmgion. DC 20540. ward to reminircing at the "Brown Bag" Toorney dinner Aue otque vale! Donations are tar-deductible ar permitted by law if they exceed the suggested donation per copy and il they It was a happenins of significance for all disabled are made .oavable . to Rehabltation Gmena. Inc. Thew *re persons and for oveyone, young or old, who lace ihe most welcome. for the Goseite, stalled by uaiunteers. ir iimltationr of aging or seek reil~direaedhealthhi1 living. entirely ruppolted by i& readers and Mends. Whether you had polio or not, read the special lraiure on the conference - eipeciaily "Rx: Know Yourrelt" and Mickie McGrads "Warnings'" The Gazette edilonfound thefoiiowinggem in The Bum- Br~athingproblems? if you were weaned from a rer- blebee, a newsleuera/ biojeedbock in a letterfrom ospinal pirator long ago and are now oxpenencing breathing dif- cord injured genileman telling aj his amual in India. Bcuiher, check with the neareit reraurce ~ersonlisted in "To desc!ibe the Bornboy Aimor, b impossible . . . A/ier the conference section on page 36 and goto a pulmonani Sabeno reported my wheelchair was hopeiemly lost, on speciallit for an evaluation. If you live in the East. note oiwori oflcbl come on boord and asked me il Iouldn't especially the one~dayevaluation program deveioped by make on exception and walk just this once, othenuire they DL Augusta Aiba at Goldwater Memonal Hqitai m New didn't know hou, to get me alj the plane." Yark City ii ir one ol the few centers with prrionnel ex^ penenced in rerpiratow polio. An evaiuation will heip you now and give you and your doctors future referencemini Rehabilitation Gazette AnnuolIntemotionalJoumaiforlndependentLiving by DisabledPeople
2 IndependentUulo~.ASPPPI ktehlm EdWbyGIniLoune 2 Independenummush Shariarig. Comrnuniu Limg by Mow Deulin. Jasull Voluntaer Comr Aduaaier/Anendanb by Ray MICanhy and Tom Hutchinson. Indql~nd~nll.,l~lI I . ,b I,,dep~ndmtAltil"dr.s < b#,,#:,* t.: ~b ,r,,-1 *P ?. .' ?. ,7, m0.r kt.,. ?,fin< .< ,!I, 'qr.oO~.,rP81, M.,TIM.L,-, ,, '..,".$., \,<,,:.. A," ,,.;,,.., .,.,,I: <,,I+ , hq,~ IndepsndmtUvlng Conten. AccounlabdiN and Management: An Wn Lena. loDirecton byMn44jeshreue innovatiow: Ada~tiueEqujpme", Centar by DauidTvrey The F~PUnlvemiu by Barbam G. Hvmnlel. ApplrenticerhipPramam bvEileenS. Berhleu Ror~archandDemuNbaB~n. Halidic Appmarhnr. Rrxarch andTrainingQn(er EualuaSonThePhyri~ caUy DlmbledSludeno' R~ldmcePrognrn.U. ofCalifornia. Bs~elplpy 1962~1981by SusunO'Hom. oddtw.. .orohjsary.. .mat isthrpuunon ~YJ. ~.~idc~rn~n, s 3. A view ofSelCH*no,i. byMoWY Ho1fird Aduts~:DodrBr.nnan.IOhla). Dr RonddH DO~SH. 1lndt"nd. ~an~n~m~ne icaimfimn). Adoptlon by PmtrulthDisahilit3es by GmieSondner Kern Mahan. MrinrMcGra#. Judy Raymond ,Ohio1 Conos~ondmt.: Susn ArmbmchV 1Ohid. Nancy Cole' 1Macounl. Bab Hin' 1Ohiol. Carok AnnParronr'1Wbnrinl.Jean98ng~t1~~~~moul Intemmdond: Ronald2 Dvluan'lToiluonl. How toGn0n.n Elephantby Ala Wohaun,Ph.D, ~ ~--~- CoveW Sunny Waingaris" manuhaumd hh p~Mblrlrvnlung,uyanivhichJaanSbnia lo* Ev~wone.Wamingi! by MickikiMGmul asa%3e. Jnsm am*. uriaphirnicn~w~pac.. maliar and hash." on a rer*mor.inr. bi"h 44 AEump.mVl.wof*.Co"fere"cebyAddrfR*ho BO~I, aiiend.dth. =mernrc in~lmational~oiio Canfarenre,re. paw 31. Photo by W Foun 45 POP~.POI~O smpoaiumn ijo~k~mdby~ii~iii~e +7 Mou~llntenninen~~os~dve~r~r~r~rv~~n~~n~~fo~s~~~p byAuguriaAlbo.MD..AmeemKhan.M~.Motheulier,M.D..EACP 49 Don.tlonpermnualro.y: HowToMakeACuirassSh=llbyDD GGGII~~VSPPPP~O.B.E., FFARCS 54.50 horn dlsabledindviduak 51 EquCment byJoeLou* Mobiliu. Redining Whe~I~h~~~CciIiigHokt 5700hom nondiablodindluiduali, nmni- VAierledVan Urn Communiration: Telmhone id^ and se~= otionrandinibtution. Edmronhlbutlonr computen. Resp,iat~r; ore loxdedudible. PatageiHandling: 54 Books byJo~ayceKnif/en Pie-add $1lordnnts8corioreign mafling 56 Co~insulthHoa~ltaICu.bu~dth~~n,RN. Rehabllltadon Gauptt. 57 Potpowd by GiniLoune 45OZMoylandAuenue 64 IntornatlondVl~lto~ot4502Ma~landAwnu~ St. Loua. M!-un63108. USA Phone: 13141 361~0675 65 AvallableBask lnuo. ISSN 603614166 Independence Through Sharing Community Living "Phuons, will you pieas eoak dinner tonight?" war a happy choice. far although both of us had been a "Ya, yer, Iunderstand. Imake chicken culiy yes? iinle hesitant about the adjurhnents weld have to make, it "Thank you Phuong, that dl be fine. Yes. Hieu and Ti. turned out that our similar inter& more than mrnpensat you may take the ball and go out on the lawn to play'' The ed for minor incanveniencer and the diflerencer in our two Viemamere children. aged 6 and 8, after only5 week temlleramen*. in the US. understood better than they spoke. hey had arked permision thmugh rips and poindng. What was I (in a wheelchair or on crufcher) ddng with a Viemamere family in my home? it all began back in 1966 when my mather died leaving me therole owner and occupant of a Cape Cod houre in a suburban Philadelphia area. it has huo bedrooms on the double adductor limp, wore ashort brace for drop foot and first floor with a full bathmom, andtherameon thesecond camed a cane for arrktance over rough terrain. M-IS Oooi There were rewral optianr open I could sell the power had been gradually diminishing, my knees had house and move to a small apartment, or close off the gone into recurvahire over 25%. No one had a definitive second floor and remain here. In both car- I would be answer ar to why. or what could be done. My Mend. Jo. alone. Or Icould ark someone to share the house with me. working at that time in a ~eneralhonlnal, had had some I r 1.1 n 'l,.., 1 I, 1 ,.,..,,.I; < , rc. :r ,3p. *, ..I bloc to accomplish there goals. One of the Jeruit Valunteerr accompanies Ray on aU his on~.fe visits to pansher and xhaolr. On one of the recent "is*. once again the pastor mured us that there war no need for a ramp at his chwch that has several steps, because of course. "We have no dirabied people who come to Mas" When we mi to point out that they are unable to get into chilich the good Father assure5 us that anyone is allowed to go into his church hr the church doors are never lacked. "But. Father. they can't get ih" we reton. "tho disabled persons are there but they can't get in hecam of the steps!ll 'Well we have pien* oipeaple who can cami people in wheelchairs up the rta~ri,"he repller. Finally we explained about independent living, doing things for onalf, and how dehumanlnng it k to have one's fanny hauled up and down steps. Aker all thir he a renre of humor and a thoughmil urging to accept per toget,,?, to ihonge o",zod~ sons with disabilities for what they are. persons. We ky to made up ofiwo Jesuli Volunteers There youngpwplo are imprw upon people that they have lar more in common part of a volunteer program admiartered by the Jeruit with disabled persons than there aie difierencer. Order They have donated their time and taientr for a year How long have you been in a wheelchair is a quertion of service to worthy social organkationi. The hvo volun~ often asked of Ray. His uruai tongue~in~cheekreply lr teem in owoffice, Janet Bamsh and Tom Hutchinron, are "Since about reven o'clock thir morning." typical ofthe members of the JeruitValunteer Corps. They "Should I call you handicapped or should Icall you both graduated ham universities in the Midwest and left disabled?'. is also met with a gentle reminder that "you their family and inends to work for xrial,uihce. Jmet and can call me Ray." Tam both chore to work with disabled perm- ar aduo~ Through inrtancer such ar there we hope to educate cater. Our Jesuit Volunteers live withi" the communiaer thore who are Ignorant and to bling about a barrierlers that the" rewe Janet and Tom iive near downtown Oak- rociety Ray Mccanhy, dlmbied byFnedmrh'aA1Mo. npresldeni of the notlonai olgonimhon, Ftiednich'r Ahso Gmup I" America. inc His odd,= & PO. Box 11116. Daklond, Collfomio 94511 Torn Thir Depamnant bier to utilile a hoWc approach in our Hutchinaan !S a nondtrabied Jer",, Volunteer minirmi. with disabled oersanr. We bei that we should -- -. u are used repeatedly Each valunteer pay. in coupom and, our expetiencer. our infomation r available in hrajue. in hrm. r paid in coupons. large print and on tape Write to: Debee Norling, VEC "When mnglng work with romoone," iayr Norllng. Coordinator. or Marilyn Golden. Acc~Cd~fomia Project "be sure that both of you clearly cammuntcate the time Coordinator. Access Califomia. Room 614. Cihi Hail. 1421 and place ofwork, how the work is to be done, and gene* Washington Sheet Oakland. Calilomia 94612, (Voice or aUy what youeach expect tooccur The actual exchangeof TPI: 4152733723) Independent Lifestyles A Life of Uncertainty . and Confidence by Richard E Bopp I am vely fond of a recently releared film. "Pins and MS. Handling the unrertainy of a chronic illness can he as Needles." produced by Genni Batterham, a young Awa difficult ar handling the physically disabling =Heck of that lian woman who has multiple rclerorir. The ffim toucher illnos. on many important qem of her life rvith MS. but the Thir r a sihlation with which I can identihi. becauw I cenui focus ir the uncertainty with which Genni and her see many uncettaintiei in my own Ufe, and because 1war husband must cope because of the unpredictable nahve of once diagnosed ae having a rare and revere form 01 MS 1981NOLUMEZ6 5 sun. And, like many paralyzed indlviduair. I rulfered in thore first veari hom a succorrion of mesure sorer and and i am living i nornai life and worwng hn-ti& as a libranan at the Universihi of liiinoir st Uibana~Chamoaion., - I no longer worry about my phyncai health. Ihave learned . from my experience to hke ife as it comer and nd be concerned about "the lang run." A5 Lord heronce raid. "In the lang run, we're all dead.'' 1iurt hope that tho end of my "long run" is a long way oii! Another area of unconainty for me has been my voca~ tion Before joining the Air Force. I was in the PhD pa- gram tu Mtory at the University of Mirwungiumb'l. Aker my rehabiiitation. my wife and I rerumed to Colum- bsa. where I resumed mv hirtow nu&=. I oarred the caiied Deulc's Disease lor neuromyelitir optical. The diag~ noris war apparently in emr as I have had no change in my condieon iparaplegla at71 teveil in wetve years. But uerrity of lllino#s. the cause of my disability ir dl not knawn, nor can it ever Compared to histoy, I found libraw school incredibly be known. duli Neuerthelerr. Icompleted tho program in 1974, and In Mav 1969 1 war in barich-ainimo atLacldandA3rForce have had same interesting libmy jobs then. , ~ since Mort B~~~in T~X~S. when, io~iowinggvera~days -id and nu recentiy. Iwar the project librarian ior a mo-year grant to symptoms. I suddenly iort feeling and movement in my develop a comprehensive coiledon of books, joumalr and leas-. and. subseouentiv. . . most of mu hunk as well. The fiimr about physical disability for the Library of the Health doctors were not sure what was happening. or if 1would Sciences at the U, of I. But I am not satisfled. I think survive, but I did runnue. They gave my candltion the iibranans basically sesve and wid the people -scholars. name "hansus~muelhs. ehhtow-~ unknown." and rent profesrbnak, et. -who are ddng the real work In the me off to the Vetemnr Howiht in Long Beach. Calrfamia world. So I have been thinklns ~enourlvabout qoinq to for rehabilitation. Tmnsverie myelitis, which r air0 rare. is an inflammation of the myetin sheath which surrounds the sninal cord the cause of thir inflammationir often not known. part of my identity ir up for grabs, adI have had to ieam It was at the Long Beach VA hospital that a neurologist to live with this uncettainty thought I had Devlc's Disease and submined me to every Another pMof my identity is finally beginning to settie test available to by to prorave it Unformnately for him, he dawn - my identity as a disabled person When I came to couldn't (one aidde in a medical journal down the drain!). the U. of 1.. I war somewhat intimidated by the disabled Unfomrnately for me, since my dirabillv had an organic studenk here and the Rehabil~tation-EducationCenter cause rather than a mumatic one. Iwa. not admined ta which guides them. There is a great emphani here on the famous SCI unit at Long Beach VA. Inrtead. Iwar put physical activities - on wheeichair PO*, on mastery of with the MS and Parkinson's patients on the neuralogy one's chair an physical independence. This is an area in ward. There I learned a lot about MS. but did not receive which f do not excel, and there were timer in the past few the excellent care and nainino I could have received. As it years when I wondered if I were a failure as a disabled . 2, ,ii,I a c If1, 1 3 i .I person. I was assessing my self-worth solely in terns of 1, 1, ,,,*d "..,%," \< ..< i.."<,i 8,T.l I>.,h?<,,L<<< 8 3 ,.cv 8 how Ihad handied my diabiliu Fortunately, 'with a linie ,,I I If rbr.~.#,mncreaI~.c:-,rchi?.e: ,. I:,~~ ~ help hom my Mends." I now view myself and my disabiliv ters in the caunm) differently 1 value more highly those qualjtier which me a For several yeas after my itinerr. Idid not know what more essential part of methan my dirabilitg is. This is the the future would hold for me. Each time Icaught a cold or source of my confidence in mysell and in the iuture. It has nu virus. I feared it would load to further paraQlr lor only happened recently: Icould not have miten thir ac~ death). since that was how my i~lneshad be^ count ywo years ago. 6 REHABILUAUONGAIEiTE ~ ~ ~~~.-~ many people have left their disabled spouses. Rut fmm the be9nning. she maintained that she did not maw me for my physical capacities, but for the "me" within. To bonow hom Tom Helms. she maniod the drive< not the car (Agoins! All Oddr, pp. 4341. She has had her doubh about me at timer, butneuei becaw of my disabiliw. She has doubted me only when Ihave forgotten how to be a caring, concerned and sensitive spo- And it ii by seeing myreif as a person who is kind. intelligent, interested in other people and in helping them that I have accepted myself as a dirabied person. To me. the absty to Men to the hurnations or share the joy of another penon is more important than the abiliiy to get myself and my wheelchair up a 6~inchcurb. No doubt some peapie can do both well - "ht now i'm happy to mi to do ~uione well. My family is also a aurce of confidence ior me. surie and Ihave two children. and a mird h due in June of '82. I my care? Ithink it is a hagedy and a havesty thatso many children in our rociew are neolected bv, oaientr, who~ con-~ sider then careers more impofiant than their children. My other "friendr" who have helped me ddne myself I Am Mysell: Me . . . ar a disabled penon have been the disabled people whose stoner I have read peoplelike TO^ H~I~S,author oi Agoinst All Oddr (Warner Book, 1978). and Fachard Independent Rtickner, who wrote My Second Twenty Yeon: An unex peaedLiie (Basic Book. 1976) And finally Bamy Corbe~ who talked to 54 spinal cord injured people and recorded their ideas and lifestylesin Oplions: Spinoicordlnjuvand Iam a French Canadian, bom in Dnrmmond"&e. Quebec. the Future (auailabie tree horn the National Spinal Cord in January 1945. 1 have five brothers and sisters. I was Injury Foundationi. Reading ihese autobiographier has bom with anhmgyp~isand mirnngmy ieh legbelow the helped me to see that. for bener or warre, Sm the same knee. Many operationr were performed on me in Monte4 penon Iwas before my disability that my disabiiiw is oniy until, when I war four years old. my fmlly moved to a pall of my meaning as a perion: and that there is no Marrachu.ettr. single "tight" way to be independent. We disabled ind~ L!. .,.:.,., 1, ,L,,"',, nnm. ,r .I,.. r 1,rrq 1 ,,.> 7.,r viduali are each unlque, with talentr and intererr, un- JI: mr, irCnnda;:~!.i IIIL,.'I.#. .r rnld ,...<.I related to our disabilieg Yet we have much in common. (T ,>:,I: r I. ~m \.' rol~m.?,, r ,.,<,. much to share. There ir much we can learn fmm each Seal and they paid for my rwgeryand 1 stayed at Lakevilie other Ihave found that reading about the Uver of others State Sanatotium fmm age five to seven. Ispoke oniy gives me a new perspadue an myreit one that is more French so the doctors and nurrer taught me English. They healthy than the one i had belore. were loving, genfle and warm and soti of adopted me. i hope to kee~lemtn4. I would Uke to unte in next I became confused about home and hospital. I thought hospital war home and Iwent to my hmiiy'r for balidayr. At reven. 1 stalled to walk with a brace on my right leg and a peg log below my knee an the leli Ileft the hospital ihemrelv~s. hey have learned from their exppnon;er, and went home. I went to pubiic school for nine months and have shared what they ioamed. I thank them for that but the teachers and the bur driver could not accept me. So I war tutored at home, Duo mornings a week, for an hour They raid they took me through the 4th grade but i Richad Born Aslant Refe,e"ce Librn*" in the uniuenity 01 didn't get an education. Inever went any place. i looked minols ilbrnly in urbom,I;I~O~~. .dsabid by tmnruerre myeii~ out the window at the chicken.. geere. ducks, turkeys. tj9. Address: 1713 Gmmeftovn Dnue. Chmpoim, llltnols 618x3 ~ ~~ -- sheep and our hone. Inopped walking. 7 When Iwar 11. [went to amodiml center in Boston and Wallace. in Saskatchewan. Canada, because he also has had rurgey on my nght hip I wwar in a body cast lor anhromyparis. Far a yew we wrote and we became good months. hen another hip operation. Altogether ln friends. in the 1979 ~mettethere was an amcle about me Canada and Bomn Ihad 29 opomtionr. Finally at age 13. that brought me many more fnendr. So Mom gave me a I took my nrst step on crutcher. When I got out of the tape recorder and now I wnte on tape. If anyone else on no hasoitai I was determined to kaep walking matter wan& to wnte to me. I vnll be hm~~ ~ ~ fa rmond on a what happened. cassette. Iam a woplelover My brothers and rirlen were rtlmng lo get mamed and Bert of all. in 1979 Gini recommended me for a job. I have chiidren and I became aware of being a teenager 1 had told her how much timeMom and irpenfwatchingTV went to a nearby Catholic school but I did not like it be- SO she mteto RO~P~A. amen of ~ynch~rsnrcription cause I had to rtan back at thr 6dmade. Iwar unhappy SeMce in New York. who hirer people to monitor cam- and ill at ease with such .vouns . hds. mrrcials an ?V and told him about me. Ithouahf rho was MY doctor inBOS~O~ me to be a teenager kidding. hen i was ahaid that he would not hire me be^ "You have a big mouth. use it." says he. cause of my lack of education. But after he called and So Itold the farnil" Idid not belona with the kids and I talked to me he raid I was hired if Iwould set the rbte wanted to grow up a teenager I$topped and I vocationai rehabilitation bureau to buy the monitoring taught myself to read and wile. I began to act like any equipment. normal redblooded Amencan feenaoer Istarted imobnu. I Good luck started to haooen. . . .. of disabled peopie. iUtGini and Jim talked me into gomg on.) Voc rehab Idiscovered my ringing power I rang like a nary nut I bought the audioividoo equipment and set me up in thouaht- 1 wanted to he a sinoer so mu, marent5. oave me businerr. ringing lessons. Isang at wedding receptioni. 1sang both Now. Sm a burineswoman. Independent My first job is counw and westem. Isang rolo and with a group. i went vew rewarding. Ilove it So lac rue pleared Mr Damen. on dater to mod- and on hadd-with disabled bavrand He is "en, undemndim ofthe dlrabiod. When the check other bays. Ilell in and outof love Iwentrieady fara year amves I90 to the bank and put it in. fnnead of being on And Ifell in love. supplemental security and food stampi, I eam my own In 1972, after mv. narc"*. seoaated mv mother who monev. had been a dietitian at a hospital, decided to retire and Last year, even more happened to me because of the move to Missouri to be near my risten It was sad to leave '79 Gozelie aldcle. A munselor of the Girl Scoutr in my fnendr. It war sad never to enjoy lobster again. St Louis read the aldcieandasked me to be acounseiorat Mom boughta house in Fanton. which is near St Louis. its summer camp. I helped others adjust by telling Lhem Imade new hen& Ijoined an Easter Sealwup af young about how I have learned to accept my own dlrabaiti-. disabled adulk. Ibecame a member ofthe dl~abledmouo. Ifeel like a mother to Lhem. Igotomonthiy meetingsattheshrine. Ilovetogota ball games and movies Ionly goout with men whoare gentle^ . . . . men. I wdl shy pure until Iam mamed. I dream that some am myreif. me. day I will marry someone who ran fulfill my life and Sii In 1974 the mart exciting thing happened. I want to fulfill his life. I dream about kaveiing and going to Dirney- Euro~eon a oarmmaae.- - to Loud- with the vinim MIs~ land In Ronda. I dream about stamns a club for other sionanes. I went by myrelf Inever dreamed Iwould be ro people with arthrogrypotir or for all mes of disabled independent. My roommate took rare of dresing me and people. on my braces. ~veyonewar glad to have me ~nyiuay.I enjoy lrving and laughing and ioving many along because I could talk French. We went to Pan. and people. my mom mart of all because she has done so Rome where Ihave a cousin who is one of the Pope's much for me. reuetarier. I got inkaduced to ~iniLaude and her ~ehobstodon Gaeetfe when a fiend gave me a 01 them to -d. Jeonm'e Ledour dhbied bu o*hthmpwpmia ond o belolu knee 1 met her at an Easter seal meeting and 1 to arnpU1Utjo". uork m home rnonironnglvr~rnme~iohHerad- Lhdo Fenton. Mvro"n63026 her She suggested I wnte to mother Gmtfe reader. Jim eSisz5 Coping with Laughter and Poetry by Airnee DiCorio I am huenhi-one. "ears . old and I maduated hom~ New~~ Castle High School in Pennwhrania in 1977 1always took it far granted that Iwouldgraduate hom collegpsome day. Eveyone in my family did. and1 ssrumedthatl wouldtoo Iwar acceoted at, and olanned to anend Duouerne Uni- versity, in the nuning pwam for the fail of 1977. How- ever in my last month of high whool. 1 became uey ill. At fint the dofton were not sure iust what war mo with me. But alter a few days. Iwas diagnosed as having myasthenia gavls. a way redour neuromuscular dire- - the one which maker L a real chore to holdvour, evelids, open. The doctors rtaited a course of beamen:, which involved heavy doses ofrtemidr. and 1 felt pretty gmd for awhile. So I beoan rchool in the fall almost if nothtnm- had happened. But alter a month or so. Ibecame ro weak and ill that I war forced to leave whool. The doctori thought a ihymectomy would help. So in the fall of 1977. they performed this operation. which isths Ihave not really accepted my illneeer. but1 am learning removal of the thymus gland. This really seemed to heip to adapt. Ican do many things. bul Ihave b do them in and ior a while I felt great again. So I *ted back to special ways I have to realize my limitations. and accept Duquesne again for the spring remMer of 1978. Things myself for what I am. Ihave iound nuowavr. to exores5. mv were going great, but towards the end of the spnngremer~ emohons. ter Istarted to have lrauble with my hands tembling and The fint is for other people. It ir laughter ~ortpeople feeling numb. I began rchml in the iall. but my hands won shy away from others who have a lot of problem, because became worse, and I began to develop other symptoms athen' problems make most people vey uncomfortabie that were ndmyasthenic Iwas forced to leave schml and For openers, I usually inkaduce people to my crutches. return home. Soon alter my walking started to iwve me, which are "Ping and Pang,'' identigl ~r.When I am and by the end of December of 1978.1 war diamoied as able to make light of and laugh at my houbler, people also havln~multiole sclerarir. reem much more eager to be around me. hl, #I<><-t,.<>me 1 .+,.h ,"A, I ua< l",~*.i ,,, ,.,,. .3 The second way ir for me. Ican let ail my secret em* hi,. .. ::I.,. :..a I,.,..g I,. A,,'.. n. 'h,, : .,,..I ,, I. , Sons out by my renet love-wemi Thmughmy poems, 11,111 ,".A, H n .I!\ Ilr :i.t,r I,.,on(>.n, . Wlll',l.rz I I can let ali my pain escape hom my mind. I feel much had an InteMew at Weminster Cailege. which is only bene~because I can hee my mind of my deep boubler. eight miles hom my home, and was accepted for the fall I like readngahout how other people cope. I hopeother semester of 1979. Goeene readen will write to me. My address is 306 Fair- When IGrt went to Wermunrtm and began accounting field Avenue, New Castle, Pennsylvania 16105. classes. I war on crutches. andsince thattime. my wallung has continued to came and go. It fluctuates hom causing me to use a wheelchair crutch=. or a cane to allowing me to get about without asistance. Ihave been hying to go to college snco 1977. Iam rm hying. At present I am still a secondsemester sophomore. Growing Up a Stutterer I am going to school voy slowly. I have found over the yean that if I by V, push too hard. Ijust make myself rick. by Lisa Foy But Iwill evenhially graduate, because it means so much to me. In the meantime, Ihave been going to Parhai Hor~ Most people roe me as an ahctive woman with brawn piahation Pmgram three times a week at our local Hu- curly hair and brown eyer and one who wem milirh man SeMceo Center. I am YPY pleared fa have been clothe. It is only when I speak that they ieam that I'm elected president of this group. disabled becaw I stutter 1981NOLllME Za 9 en are known for pro1ongmng words oi blends, eye- blink^ inq. twitchinq, lickinq the tonme. biockinq and faciai on- to;on. - unfoltunate~~.I do all the above. I don't remember just what inndemt prompted s"ltttti- ing,but Ido recall my mothertakingme h speech therapy at age ixfor aIkulaBon problem Prolonging the vowe1i was emohan2ed at that time and still is the method most & stutter or &sad to let me ~. uith them - adu~tr were no h~ner My mouth felt hke an anlmal ?rap most of the 6me The more Itied to open it. the more it slammed shut There were times when i didn't ralk tor week. and my tamiiy aiwavs~,~ comoiained. tharthev did"', know me. How could I tell them with such a hap for a mouth? ironically. anger gave me peace. Inwer shdtered when I swore When Icouldn't talk. Ihecame violent Throdm. - ~ Stunering s uew painful for me to &cus at the age of today Their altitudes are no different than those reflected 25. hut 1 am taiking about it so that I can possibly save in society others hom going through the rnme expenenca i did, I They onen discouraged me kom using the phone, so it aiso want to educate the ouhlic on what smffenng is really was not until 1 war 22 and out of rchaoi that the phone became a regular commodity in my life. Teachers either ionored me or were heli bent an havina end of th* word sometimei it is a\\ three. .-* Sometimes. I cannot understand words or cannot ray Iwould not hesitate to trke a rtunenng chbid out of the them so I block. Olten. the words and the mundr which public school where the sires ii so great, and substitute are hard for the chiid to produce are the same on- the temporary or iong-tern remite or dintcal care. This way ranere, srmssier with. Ihate fembly when I rhltter on the the problems of stutiering andlor family dilficuloos are ad^ most personal derctiptionof me, my nameandit is such dressed eariy in the child's life which may ai1e"iate ""~ a rhan one too. spoken mispties later When I tuner. Iam uruai1y gasping for air lihe a panting What hurl memost ar a child and still hultsas a25~year dog. peo~iereact by wa~ngaway ignoring me or avoid^ old adult is people ~aylngthat I stutter on pumore. How ing eye contact. If peopieseea blind penon oiromeone in could I he ituuenng on putpro when I have spent 13 a wheelchair the". stoo. b helothem -vnth me, the" are years in speech therapy hying to rtop it? stune#ng is like hamfied. diabetes. There is no cure. only control. After I stutter, ikei like a ruptured sewage fank. leaking I paid a "isit to the Marrachurem Rehabitation Cam- aneer- What Ireallv need is a hu~.lhcr un~redicfahiiituir mission in 1972 when 1 was 17 My paienli got tho paperr nerve-wracking and delays my penonai adluibent and ready and Ibecame eligible in 1973. They acceptedwriting social growth in this fad-paced worid. ar an obtainable goal far me. My other disabilities don't bother me as much. I can When I finally gat a rteady vocational rehabilitation accept the fact that I limp a ictOe when I get tired and that I COU~S~IO~.I tied to te~ihim just how stuttering affected don't hear too well. my life. Keeping bends was dimcult and my education Stutterino is not dlrfimtino nor do- it mean a im suffered immearumbly, ar 1 m~eiymoke. 1 hid him that. without help, my potential ar a dter would be farwer limited as communicationrkillr viaspeaking are ahroluteiy . - essential. problem identih/ing the dim;der when they see h. Shltier- He Nmed a deaf ear ?a my plew. saying it wasn't a real 10 REHABlilTAlllON GiVElTE problem since 1 never stuttered badly uim him. This was Iam now in psychotherapy and the therapist cannot pamaily comcf since Ihad grown accustomed to him. But seem to understand the emotional shms d rhlwting. he never saw me innew social situations. schoolr. oaaer. He reemr to think Ican rtao stutterinelnrtanmi itke hlmins and lamiiv nathennqs. where Inever failed to bomb off a TV set. He prefers to ray, "You do if to youmelt The irr~irlippebforreveri years hut then showed up Lira." axeatlv whcn if camtima far uork ahcr Isduattd fnm Tho fun of ~wn~anknzhht~,the 5atbfnce.m oi embg o . . he riatirticr on ue damins~~~~~ru~~t~~~ will keep hylng. Iam determined to make a therapy pr* 1.400.000 persons stutter with males outnurnbeling le gram work hr me. males four io one. The annual cost of heating allspeech Now. there is another program staang at New England disorders totair $500.000.000. Lost earning powers on all Rehabilitation Hospital in Wabum. Marrachusem. The speech disorden mn apprarumately $2.000.000.000 per "earment consists of l0~hour-a-dayredom for three year week. I'llkeep on hyingmaybe this one dl work. After a number of additional fak stam. Iwas refened to Emerson RobMns Speech and Heating Clinic where Ihave been since 197% Sincethathe I have made L~_F~~ ,,I hooeaB.A. in ~ib~~~~~d:~,~~~~~i~~h~~~u slow progress but hey recenny informed me hat hey COII=~ m 1978 ~unngmy mllegie yeom, Ivent ahmad to cannot help me anymore. The main rearan for this tailure in ~~~d~~ "~dd~:6 ~~ihenue. wal~ole M-chu- was lack of intensity Therapy must he intense and contin- ,m'02081. "our to be succeiriul. Just Me by Flo Puffer Iwar hom on January 1.1918 and my parants first noticed happy at hnt and two more bahier came, Rickie and something war wrong when I couldn't sh up at ru months Renee. But, as the yean went by, Ivan developed a ca~ and didn't walk undl Iwas four yeam old. If was then that deine habit from taking cough medicine for his cough due they learned that I had cerebral palsy. to heavy smobng. The btlllls piled up and lvan became At six yean old. I rtattod fir* grade. My broth=< mean and then stopped workng. So. in 1950. 1 got a Howard. looked aha me dunng the two years Iwas in the divorce and went on welfare and Iraised the three children Hnt grade. Then Imoved to Mnneapoiiiand liveddth my by myself. grandparen* while Iattended Michael Dowhg School far Today Ihave many hobbies to keep me bmy Ihahysit the dirabled and John Manhall High School. I graduated for my naghhors and for Renee. calieci autographs of in 1938 at age 20. famous wonle who hebed me owrcomo mv rhvnesr and For two yean I went m the ~eneralco1ieg.a at the uni- versiy of Minnesota. Later I took an inderung and filing come at a burin- schwl. Iworked farGoodwil1 lndur~ hie and NYA. f have done everything that 1 set out to do and I am At age 24,Ldecided Iwould keto get mamed and mire happy saying, "I can do anything that an average penon can a lamih,~ ~IuriLke anv other woman. At a camo for disabled do!!" people. 1 met and feu in love dth one of the caunselori. -~ lvan PuHer We were mamed slx monthr later on NW no Puifer dirabled by cerebml pol= hor ml~dthme rh~idm Year'3 Dw- coincidentally my 25th hinhday andacomplt6hdmony olher#lelonggmb Heraddrass3355 =Awnve South, St. Louis Po*, MlnnesoY. 55426. Our first ~~i~,dVedjn ~~~~~b~~ 1947 we were lndependent Attitudes Renegotiation of Society's Handicaps by Jody Palmour Independent living 1s a last mowing philosophy among Existing dirability piogmmr are Mbl to the vey our- disabled people. It calls for ail reivices to be geared toward fence of many dirabledheticanr. Yet onemunalro won^ developing deinstiiutionai~edenvironmenh tha, encour der how many billion. of dolbrs oddbe raved if the aoe" even revelviv,. imoatred ..oeooie to make the manu deci- oronrams. - were aimed toward intamtino disabled oeaoie. . iionr affecting their own iiver. more fully into the mahmeam of rociew. Lord knows a lot of government money has been spent The national budge- nirir thus rontcibuter to the on disabled people. Billions mare have been glven in our need for disabled people to renegotiate the handicaps we name And many important civil nghtr law and regula have been given, and to Bght for thore rehabilitation and dons are now on tho books. However. much of this money self-helpprograms that can and do rave euey communiw and many of those bwr have been dweloped without a meat deal of monw huly involving disabled people in determining howm we it The need to impiemant and eniorca exliting regulationr wisely Public poiicy has yet lo focus on the concept of means we must reopen there negotiations not only at the fndeoendent Livino for DLbled Ameticanr. national level, but in officer, whoolr and clw halls acm ~~,~ ~ Only in such an independent environment ran disabled the nation. Our pnmay largeis lor ienegobanng iaiier peopie grow out of chlidlike dependency into adult maiu- handicaps are the managen 01 all the institutionr within "ty. or reium to their pie~accidentor predlseare racial which we mu* make places for ourselves - the wmk status. Only in an environment of accerrible domestic, rec places, schwls, churches. shops, community and recrea- reational and vocational opportunity can &bled people tional areas. Traditionally, lhey have all been rather in- live with the relf~m~ctand dimilu-. that is wrrible far all accwlble m us. other men and women. For many disabled people whodbelieve they have no Ctc, 1. ., .l'~l.. .. ,"Q5 ,,<.,3ppc,,,, ,88 l<.tl..,.,, lh,", E . . without eve; believing in ur or being proud of us. They weaknesses and ark for aairfance - cannot eariiy avoid never challenge and encourage ur to live ar hUy and ma- becoming point-menand women in the rrmggie for greai- turely as we can. er justice for everyone. L98LNOLUMEZ4 To achieve this. we need oppamulities that dl tncreare But my wife sent my amcie to a few of haclarimater. the practical wisdom of our members: and we need the Someone had the inrpimtion to duplicate the amc1o and support of a resped ronety that promotes people'r rend it to oil the people who were coming to the reunion. ~roductiveners rather than stismadrer them for their They ail knew much about me when they came to the iifferences. affai~and they wanted to meet me and idk to me when We disabled people have a iot more going h us than they got there. i war sumnded by a circle of interdng, we have been led to belfeve - and a lot la about which friendly and warn women and men. to be ashamed. Fairer handicaps wiil allow us to demon- Thir wstem to heb break down barriers can be used b" mate~ ~~~~~ ,ha, We'1e game. The question Is, will others let us play7 - tor can have that peran write an autobiagmphy of a few Jody Pnimoui "rm a 36-por Jamb Orel: PhD. Pmlerrorolemnomb lemeritu~l,Udm Col- lege ol Symcus UnioeniQ hod hk tongue and !owprjom re^ moved more than lour Wars ago becowe of canter Addm We who are disabled ireqventb feel ieH out of things. 1055 South Street. Clinton. New Yorh 13323. We see the world buaing with activity and we are usually -- on the outer edge - lonely, neglected. unrh~ngwe could reach out and make ontadwlth other people. But there is a barrier. invisible but unformnstely obrrmctive. that im- peder our communicating with tho= we meet Must I Mourn? Mast people in our society are taught not to pry openly into other people's problems, not to ark embarrassing by James H. McGmth questions, not to riare. The easiest way out of an awinvard social relationrhip with a handicapped person is to Ignore When I war *"en the opportunity to canmbufe a ihoit her or him. doing nothing more than cart &rove glances. "amcle of the hind which you would like ta have found at Children sre ler, inhibited and stare openly. some pamcuiar stage of rehabilltation." an kue concem~ in my own case. my tongue and lower jaw were re- in9 my ~sychoiogicaiadjusrment came to mind. moved more than four year, ago because of mcer I taks The story bani in July of 1980 when my vacation all my food and drink through a iube inserted for each ended abruptly with an accident which damaged my meal into my stomach. ido all my communicatingby -t- fourth and fifih cslvicd vertebrae. The evenh which fol- ing. i did not learn hand~dgnlanguage because not many lowed the accident are familiar to ouadrioleoicr who have of my friends and relatives would undenfand me thatway. I wrote an amcle tiUed "Oral Cancer: Coping with the Changes," which war published in the August 1979 issue . - of American ~oumoiof ~uningI duplicated this amc[* medical complicationr. and dirhibuted it widely. Here i rhaU give one example of During the ivit weeks of howi~titin,as i began to the dramahc difference it made. assess my situation. Irehd a Iraaadv had befallen me 8 ." 'L n, mrnycr, : Ill" ..\or I ' .: .,1;.11. i""dr There were no rurtained periods of depression. nere war N ~.i Having had cerebral palsy since birth Iprefer a wheelchau- Ihave gained many close hiends in the pr-. I've never regretted my lack of disabled hiends becam my nondi5- abied hiendr haveireated me ar a person with heneed to receive and give iwe. They've allowed me to give and receive an countlers acosions. Some of my hiendships lasted horn the fourth through the twelnh grade and . . beyond. with my nondlrabled peen. Althoush mv exneriencer in oubllc clarrraom3 have However all that changed four years later when I en- rolled at my local elementary school, WmnElementary The principal at the school far the disabled felt Ihad the potential to make it ln a public classrwm, even though I outnumber the few differencer. wouid need help from fellow studena because I am not In the fall of 1981. 1 began attending Geoq~a totally independent. Univerrihi I am ~rerentlv. .Dunuine a Commercial Murid The teachers helped me adjust to the new environment. Recording associate degree - Imay also m, fa earn my Since I had already mastered basic techniques lor doing B.B.A. as weU. such things as math prnblem on the wipewriter (1 don't I am convinced that all the ramps and elevatoir land wtie weill, many problems solved themdver and the other devicerl will never take the place d the help and teachers did not Mnd adjusting to my methods. guidance that the nondirabled cangive to the disabledand The students were also helpful. Whatever job needad ro the love and hiendship thaf we, the disabled. can give be done. Icould alwayr find a student to do it - in fan. I to them. had ro many wanting to help thaf the students took tumo pushing my wheelchair I shall welcome conerpondence fmm other disabled Whlle the number of eager helpers eventually decreased people lstudenk in parOculari. My home add- is 2962 a Me,I always found people to meet my physical nee&. Medinah Court. Atlanta. GeoqIa 30341. 1CW1NOLUME 2% 15 Independent Living Centers Accountability and Management An Open Letter to Directors by Maggle Shreve As Ihave become more involved in the administration af ham of Board members. omfessionalr. educators~ ~, or ~ ~~con^ lndependent Living Programs. I have grown inneasingly sultan&. Once a program's phiiorophy lr set. management concerned about the accountabitiv and management of should be the next step in program development The our ~romms.This acmuntrbilib lr most imoortant to establishment of a manaoement rbuctu~ebevlni with n . . -~ ~ consumers of our rendcer. but is also imponant to cument 5~siepplanning process: and patenha1 funding sower. One af my fauonta anal- 11 Defining the mission - What ii the prqiram's phlla~ ogies on this rubled is the relationship of Independent ophy and main effort? Living Programs to conrumen. In many carer, there pro- 21 Semng a goal or goals - What should happen ar a grams are demonshating haw to ark for heip to their con^ resuit of the ~rogmm'reffom in 5 yean? sumen. So. if Independent Living Programs need help 31 Listing the objectiver to reach the goallri Howunll with adminirtrahve assuer. they also should be able to the program addres the goair during the fint year. ark for heip. From what I have seen over the la* four seond yea< etc? years, lndependent Living Pmmams are having difhculv 41 Developing action stws - How can each yeady ob- doing this. iective be mee b' c lhd~t.~~oiv~~tLLTZ,!~Prov?~~ h),+ cm.a, bi . !, ,l.~.gr~cs,,~,~~,,~,l.~l~r.s tor acx,<,? was not funded by the state of M'nouri, but the members Innovations of the task force have pledged their ruppo* of Oppormni~ tie Unlimited's program on an informal baris. Opportuniber Unlimited will ertabhh fee-for-sem.ce ai~ Adamtlvo Eaul~montCenterlDauid Tureu rangemens with rchaol dishicts thmughout the *ate. and this component will conhibute to the economic viability of the center independent of Titie VlI hnds. This component could alio be expanded to include a wheelchair repair service, pending negotiations unth the Uechlcal Ensneering Depamnenf of the University of . . Mirraun-Columbia, which currenuy provider this sewice. abled children and adds in the reledon of necman/ This will ~rovidean additional income~oroducinq.*~ti*ultu . adaptive equipment The cent- d stock a large asrort- for the center ment of vanour hmer of adaotive devlcer. which will be Oppodnltier Unlimited wiU provide a much needed remce and provide a much needed ciorure of gaps in service 101 seuere1y disabled individuair m the mid- . . Mirrowi area. In addition. the Adaptiue Equipment com- the effe/tiueness of a piece of equipment and relecineces- ponent wiU provide a waUv needed benefit to the school raw modiBcationr before purchasingthe item direcdy lrom age children of the entire rite of ~issoun. the rupp1ier Address: Dave Tpy Director Opponunities UnUmited The Division of special Education of the Stab of ME. Independent Living Center In Mid-Miuoun. Inc, 111 XOU~is rh-ang~yin of the component and has South 903 Sweet. Suite 211. Columbia. Missouri 65201. pledged itr financial. as well as staff support The Division will provide the salay of tho Adaptive Equipment Coad- nator and other expenses of this companenr Stiono ruowrt has been oledeed bv a number of de~ The Free UnlverrlhliBorbam G. Hurnrnel "What is Medical Assistance and what will it cover? "If Itake a paiftlme job, hauwiil it affect my benefib"' Apprenticeship PromamiEileen S. Berkley "My anendant and I aren't gethng along. How can I Beth Lindl exemplifies a program that's womng at Accerr make myself more clear?' to Independence. an independent living center in Madi- There are jut a few of the different Mndr af question5 son. Wisconsin. Beth. swereiy ddisabled with muruiar dyr- diabled people may have as they pursue living indepen- h-ophy started workng as an apprentice m the Execufive dently. Access to Independence, an independent living Director in March. 1981. Like the 11 other apprentirer center in Madison. Wisconsin. decided to orovide a forum who have worked at Accw. Beth war not paid a =Ian/ far where disabled people could share and leam the khd of her ow-time work but did reroiw on~the-lobminins. she living. In planning for what workshap. would be offered, dir- abled people were surveyed ar to what they'd find most interesting and helpful. From these prelerencer, a vanehi her apprenticeship. Her longterm goal war to gain the of topics were reiected, including attendant managemenf qualifications needed to fill an admin=hatiue parition houinq information and nshtr, rexualihi an~ealin~seMce in a small organllation. Beth I3 on her way b achieving this goal - when a pantime housing counselor position opened up at *he center, the director immediately hired Beth. Her skills and her cham have "mved to be a real met Access dweioped the apprenticmhip program for hua main rearonr. First. Access wanted o increase the number of disabled persons an itr staff. By receiving firsthand job teach these workshops, at timer, theie have been other expe"ence over several months. the apprenticez will be people wiunth special experbse who have rewed as co-h- better able to comrxte for lobs that become avajlable with- smictors. Acceis is cornmiNed to paying dirabied people , n., n ",", I> < prMTnn, in ."$%, * id,@<; '0,.pro?lm who are selected as inrhlciom, acknawledgng the exper- ,",",.,,,:, . _ A,,, . 1,,,,... .).I..,?.,).I :, tire the" have to offer lnshlctors are not full-time em^ I i".. .,,.I :I(. I I,..,".. ID...,, 8 > lr..Ilo,lool,.. . 11,. ,. 7, ,I. able positions. A second rearon for the program 13 simply to provide valuable job haining and the pracbel expenonce of wok ing in an office. providing direct seMceroidoingclericalor administrative work. Apprentices who are reeking employ- ment in other orqanimtionr receive job refenalr, job C."""~ services andlor raping of maten& are alro availabie with advance notice. Sometimes workshop have developed into full-blown projectr. For example, in conjundon with a public cable Bared on his or her lntermt and iWil iewl, each N station. Access developed a workshop which enabled apprentice is matched wiih one staff member within the disabled ..oeoole to olan. and omduce their own N or- center The apprentice must posseis at leaf a minimum gram. A care of people gat together and decided upon a level of im.For example. he apprentice ~ngn.d to program idea that involved elementary who01 age chUdren work with the clerk mist must already porreis some m- talkvno with disabled adults about dirabililu feelinor. and ing skillr. An apprentice who will work wiih the indepen- dent living caunrelor mud be able to relate weU with will air as a half hour show in rpnng of 1982. This ap~ others. oorhmiiu to oet a taste of N oroduction has led to an The program allows far quite a bit of tle*blliN for both apprentices and staff. Apprentices are encouraged to con^ cenh-ate on pamcular facets of tho work that are most interesting or will pmvide opwmnitirr to develop specific skills. Staff members are hee to "bo"0w" other appren- tic- (upon muhtal consent) to work on special projects or activities. Address: Barbara G. Hummel. Univorri~Caordnafor Access to Independence, Inc., 1954 East Warhington Avenue. Madison. Wircanrin 53704. 18 gave me something to grab onin along with some vey useful job experience that Ican put on my resume." Address: EileenS. Berkley Executive Director. Acceir to Independence. Inc, 1954 East Warhtnmn Avenue. Madi- anendant is ill. allowr for adequate days OH for attendanfr, son. Wisconsin 53704 and for more freedom for the dibied person. Rerpoh den* locate attendants ththothgh anendant refanal service, Disabled Studenk' Program at the Univorsiu and through the Center for Independent Living in Berkeley, word of Evaluation mouth, and newr~aoeraduerllremenb. The Physiully Disabled Shldents' Residence Pramam Univorslty of Califomla. Bakeley 1962-1981iSusan O'Hom . . The likelihood of returning to nursing homes or family using public hansporiation. homes ir vey low for sewrely disabled students who have Approximately Ulipercent d the rqondenir arecur- parllnpated in the Physically Dirabledstudenb' Rendence renUy rtudenir at the Univernty. Thim percent have grad- Program at the University of Caiifomia in Berkeiey Prior uated with Bachelor's. Marteir. or Jurirprudence degrees. to admisrion to the University, almost dl rtudena were Majors were diverse: architecture, political wience, law, dependent on familier or medical facilities Today, ninety~ English. psychology roual welfare. French, economlu. three percent are living in their own aparmimts or homes. computer science. buinesr adminirh.ahon. public health. according to a 1981 survey of former pamcipanb. Ten percent hanrferredto other uniuerrities; fourteen per- More than 115 reverelv disabled hrdenb have used cent withdrew hom rchaal. About hail of all reswndents -. i.ve made. Eieven pakcipants aye deceamd. Another fhiwfour percent of the repondents are em^ The Program began twenty yeus ago with a handhd of ployed lull time; six percent work pahtime. Some are students who lived in a wing of the campus hospital In the emoiaved in nate oouemment: ~irectorand ~eouh,~i- early 1960's. The shidents located and hired pahtime at- tendanir for personal care anddrdnot ure the hoipitalifaH except for on~caUemergencyrervicer at night In 1975, the Program lefl the hoipltai and war integrated into the Uni- abilities, Nevada. Many are in the field of data procwing: voriiu residence halls. At that time a fuii~timecoordinator programmers. analysb. program managers at such firms as and ruppon staff were hired, under a gmnt hom the cali~ international Businerr Machines, Standard Oil, Fjreman'r lomia State Deparhnent of Rehabilitation. Since then. one Fund. One i-T employed in the Mayois Office of Lor experienced stall member is on duw twentyfour hours a Angeles. one is in reai estate, and one iia prooheader and day to provide arriance while hrdents leam to we librarian for Kaiser Aluminum Chemical Cornoration. The the campus and community rerourcer. Staff membem a=- Univerriy employs several farmer pamcipants: a dmitlng quaint students with the now fornaiiy established anen- technician in architermre. a computer ipetiaM in graph- danf refermi setvice. and helo with interviewino.- hirina- ics. an accountanuanaiusr and the coodinator of the ~esi- and mining of attendants. A aHmember B avdiable lor dence Program. One opemter a telephone answering rer re-positioning at night helping wlh meal trays, for em-- vice. one ir r~lf~employedin wood crab. another is the -.oencier. and for the manu, unoredictabie . needs that arise. manager of Driving Aldr. Inc. Several are counselors inths Almost all studenk move out to pnvate aparmients at the field of disabiliw end of the school year In an apen~endedquestion on "Mort Important things Over the went, yea. ruty~fawwant of the par learned" in the Residence Pram. remondenb ranked ticipantr hawe had spinal mrd wuries, fweniyflve per cent had a lorn of murcular dyskophy and the remaining eleven percent had other disabilities, such as cerebral palsy, post-polio, rheumatoid anhritis, and ortoogeneris . impedecta. Recent years show an increase in hrdenh with the laiter disabilities. Physically Disabled Studentr' Residence Pragnm. Univer- sity 01 Calilomia. 2515 Channing Way. Berkeley. Calilomia 94720. 19 eaining m the independent living centen in the region. Research and The kaining and technical assistance camponenti of Phase I and 11 will be seared to the nradudon oi tooid Demonstration monographs of independent living relulcer such as atten- dant care. housing and housing releml. finand manage^ Holistic Approaches to Independent Living (HAIL, Inc) ment, coumelinq, rlull. trainina.- emolovment... recreation. Row Rarenbev, Director. 816Amm0, Suite 100. Deouer, and transporntion. Colorado 80204 A reglononal resource center of programs and funding In November 1981. HAlL war awarded a three-yeat sources will be ertablirhed and a mane exchanee- network contract by the US. uepamnent of Education to demo* will be developed. skate model approache~iorimproveddeliveiyollndepen- Phase 111 will be a regional demonshtion of the maderr dent living relulcei. impact Research and Tnlning Center on Independent living. Jomes E Budde. Director. The UniuemQ oiKansas. 348 Holuanh, iawrence, Konm 66045. In November 1981, the R&T Center war awarded a -~ - coneact to stud" the indenendent livino field -the needs~~~~, at risk of inrtitutionaliratio~and identiiying independent the cunent state of ihoareticai development and available living proaamr in a 15state region. The 15 state are re50urces. Arkansas. Colorado. Iowa. Kanar. Louisiana. Mirroun. The study of independent living dl be limited to iwo Montana. Nebraska. New Meuco. Noh Dakota. South core areas: foundations for independent livinq and inde- Dakota. Oklahoma. Texar. Utah and Wyoming. pendent 1ivI"g relulcer. Presently HAlL ir seelung persons who would be ding The foundations core will mnmtwo rmdies. identifica~ to fill out the comprehensive needs survey form or who tion of prychologlcal and environmental determinant- of would be willing to be inteniewed. if you are interested. independence and identification of influence 01 family get in touch with Raw Rarenberg. and rimificant otheo. Phase 11 will involve the implementation of the training he-seruices mre will locus on two pmblem areas: pear program and the provision of technical assistance and helpers and promam evaluation. Oddity . . . or odyssey . . . That is the question . Conigan, S.J. J Douid "...whether tis nobler to suffer the slings and amwr ofoutrageous follune or take mragalnn a sea of houble I and by opposing 1 end them . . ." I Some people make history by taking* stand on some vital :' 3~.cp* I current issue. By conmc Iseem to make my mark when r. .., -2s ,F. '.-> ! I'm silting down. Such was the rare lart Apd when I at =.* ,(.. 9.: I .-, .. down to dircurr the resulb of my learning disabiiiw fesb with Ram/ Lingren. Many of my rurpicioni wets pinpaint- -.F . '.>..--I. -. ed. but Ishall nwer forget BeWr question. "Where have . . you been for the last 15 yeaol" I Now Ibuly Celt that Icould ark Ule question behind the question. "Fifieen years? How about the lart 30 years?" I J I I S.LO 8 g o r Ya, from grade rchwl. through high rchwl. on into my 30 cean oh ,I iloirlr I. D. l~~~~~~~ li,~~bl~,llpenrlll Jesuit training and job auipmentr and even during my 20 REHRBILITATION Grn rabbaticai experience - a hidden powpr kept divlalacing drawing me more to this deep rptriruai rou~ce. and pursuing me down the labyrinthine ways ofthe times. From 1967 ti1 now, there have been a rucccliion of the spaces and the vey breath of my Me. diverse and chauenging asslgnmentr. /\I I changed from Going way back, I can remember how painful and hu- the role of teacherto retreat master to campus minista, the miliating it war in the iatter dam of grade rchooi b shy monster ontinualiy haunted me all the way &the mon- after ~Iehhe~ld Lni to curk uul word problemr ulfhout ster roared, Iwould nm again. Finally last Apnl at Skylmo asrirtance. "Nevey" said I, 'WII I ark a quaon about College. I stopped running and began to waik again. I math amin." Dwing my hlqh schwi davs. Iwar too naive enroiled in the Leamins Center there. Noui thank Gad .I: ,x ,, \I " I " . 4r.1 I:,.:+, i?i or.. a,,.,.,, r ...* ,.,.",.li I rmm mo,.. r ~rre.:#, 1, , ,I. : .I! r ;(I ,. cx ! Am~-w#~r-r ~cin a' 8Im: ,r,w I ..> . ,,sr I il .,.',., A View of Self-Hypnosis During the part year an old pmblem with pain in a hlp and Within by Dennkdaffe (AlfredA. Knopf. New Ymk, 19801. leg returned. it became so conhhuohwhik simng ngpththt 1 i began to get an undartrmdlng that gave me enough was almost unable to keep on working. Ahways before. courage to tell my husband what Iwanted todo. Of cou~ without gfving It any parkcular thought. Ihad been able to it was obvious to both of ur that tho vow hi rtep had to biock it out while I war working. My ptincipal work is be consultation unth a doctor Iwent to a specialistin physiL muricoiagid research, editing and writing about music. It cal medicine and rehabiittation, but I did not have tho is ra engrossing that when i look up from nn 18th cenhly courage to teil him what Ireally wanted to do Iam vey manuw"t and see cars whiz by the unndow it wmetirnffi aware that the medical ommuni@j at lage has a vey seems anachronistic. mixed view of hypnosis as a medical &I. Other than blockjng it out Re pal" war always relieved Aher a di~ursianand examination. tho doctorwar able when my feet and legs were repositioned. and there war to rule out omanic or prwessive dirorden and to deter never an". .pain when twlsdown.. . Ireasoned that it war not mine that the pain seemed m stem hom measure from ~aused.theroiore, by an inlemon or romeihing more sen- rimng in the same position forso many consecutive hours. ous. But it reached be point where Irometimes had to call There were na easy solutions to thispmblem becam Iam a neighbor and ask to have my feet moved: and then it alone all day while my husband is at his officeand I can reached the point whereeven that did not stopthe pain for neither shih my body wight inthe chair nor reposition my more than a vey few minufffi. i wed to undeotand why I legs and feet significantiy enough to make much difference was no Ionpr abie to block It out. and failed completely. in weight dis@bution. We awed to by to find a nan-nar- I decided that for me, the answer would be to leam retf~ cotic and non-habihlating medication that would kill main hypnosis. i knew "othing about it at all except thaf It k a and not pmduce unpleasant side eHectr. means of .semn~ .in touch dththe unconscious. and bat it Dun"* the ne* few week, while hvins different medi- must be the answer to phenomena such as tho yawalk cations. imade up my mind to take theplunge. lwas ahaid lng on hot coals unthouf pain or rcamng. This was a roiu to try hypnosis by myseif because i understood that Re tion Iwas sure Icould use. rate of breathingslowr down dunng tho processof becam- When iread, at the ruggertion ofairiend. HeaIthgFmm ing deeply relaxed. Since I use a repiramr, the pmped LS8IWOLUME 26 21 that it war a positive step in the right dinction. He taught me other techniques d"""9 the nextresrionr and in a few weeks Iwar able to diwontinue all medication. I war lor- ing some weight, I had a hemendourly high energy iwel. there was a imgand almost constant flaw of creative ideas (an essential pan of my work) and eueyone Iraw said how much better I Iwked. 1 iarely had any pain I ohoned the roeciail and told him what I war doina. He was delighted1 My pemnal physician gave me a gen~ era1 examination and Itold him. He %Id that although he knew lihle about hypnosis. he war in favor of a taehnique thaf enabled me to control pain. Ikeep in touch with him. and discuss anything now iat Iwant to tni 10 conect with hypnosis. This is w~ntlalbecause the pain mechanism ir denmed to let the canvlour mind know there cr rome~ ject with the therapiri. When I wake one moming with a rplittlng headache. Iinduced a light trance and asked the endophinr to rush In there and relieve the headache. It disappeared almost inrtantiy I mention this lo undedina the fact that the power of tho unconwiour k awesome. Margel" Hatford. "Tiir pori,er of the unconscious a owrrvnlr ' The mottoshould ahvayr be. "Becmeful what youarkfor YO" might get it" frightened me. I made an appoinrmonf with a qualified I have from 9548 percent rucceri In eiimina6ng the hypnotherapirt who war recommended by a fiend who specihc hip and leg pain endrely. Iuse imagey liberally. For works in the medical communihi. Idid not omit anv details example. I see the numbnerr of nnertherria encasing my from my dkurrion with him. 1h.y havetold hiiconrid- ieg hom toes to hip like a msparent sheet When it cr in erably more than necerraw, but Ifelt it was important lor place. I slip a linie piece of cloud under my lest I can him to have as much information as ~rrible. viru&e delicious meals without wnn6ny to eat more than 11, ,,:A< Mamew Holfod. "I "ms a Dinno teacher and leci*1w before oneolpolio in 1951.. .lam mamedandlue houeonedovghrer and o omndchiid.. .Iom now a music ed,*r uner ond some- worked some tima and not otherr At dinner time. Iwas limes glue lecmre-reclfab on the horp.rhod.. . I ure o boniom scarcely hungr and ate VOY lightly. m3p,mtar uith M"~,Mo"M during the day, the mmngbed Dung the succeeding days. I mod relf~hypnorlFwith or chest re8pimr at night " Add-: 1641 Marshoil, Hod". vaying degreer oi success. The therapLa hadmld me that. Tew 77W6. initially, Imight hawe no more than 2 percent succw, but Adoption by Parents with Disabilities Grace Sondness If we are honeit about our own rtrengthr and weaknerrer and unUing to make the effort we adults with di~abiliti~ can pioneer in an area which yields both personal ratisiac- -fir- tian and service to othon - parenting through adoption. , :, , ..g k ' ,, :~, !+~, But we must have courage because the seelung E a shug- ,. , gle. ofien fraught with dlrcouragement, and our acts of I adomon are anen mticized and doubted. We mvrt have A' , wisdom. becaure to adapt and parent rucceiriuiiy we must - know what work and what doesn't work - what to at- tempt and to rehain from hying. Twenhi-three years ago, my nondisabied husband. Dave. and I first explored the ~ibiliyof adopting. Mar- tied l- than a year. we knew we weren't yet ready to be parents. but we fully intended to adopt someday How- evei the agency director we talked with obviously had eouble imagining that a frail pollo quad with rerpiiatory problems could be a mothei i remember his words: "~e glad you have each other Don't hy ia be parents. too? About four years later our first child amved. through the ,, .,. faith and endorsement of a woman who knew hmexpen- " ence that miraciei do happen. We had found the oppor- tuniy lo reek out BenhaHolt who, with her husband. had begun the Holt Adoption Program to seek famih for GI. babies, byproducts of the Korean war With her help we adopted. first a mainowlshed hve-yearoid girl who war mildly cerebral palsied, and. second, a fowyearold "rs- e? who had some paralysis from polio. After that it war easy Our third, a tiny Mexican-Black grl. war phyiicaily her handicap was being The Su,,dr:t,.~+ fnnlziu 11 tor born m~i.~nn~ saba. cindx ~i~ born a ce Each one who war ovd i'er hrdghrer lhl#slv Lara Uaue Sondn-. GmceSnndn-. Corlo. Yonos. Sbue. AeSoon Genet. Aiyna. ~etih. considered, for hard to oiace wav D-!me. . ~~ ~ ~~ rurely, important our bejnn allowed to ado~t an factor in ooolio, the ston, of our rekral made~ ~ a- ----aond mvrrinie...t at all. idoption meebngs. ~y that time ~aveanti I we= bath AE OUT family grew, we began toreceive pleas for helpor deeply involved ar adoption counrelm for CROSS- advice. People with ierrer diabii~tierthan mine were beins ROADS. the adoption agency we'd helped to bnng into refused by agenciei around the counhy There was really existence, It was in many ways a dream come hue, for nothing we could do for them then, becaure prejudice war CROSSROADS emphariled homer for children unth rpe- tw great But we were able to continue becaure we'd cia1 nee& and would work far people like me. proven we could succeed. or at least hold our oum. as That is where we are today - invalved and excited mrents. about the pwibilities with CROSSROADS, erpecialiy Our mort painful --dawn came after eight adoptions, when it involves the farmlie and children who concern us when a judge in India refused us becaure, he raid. icould- mort Four of my client families have one partner unth a n't manage a family becaure 1- "ctippied" Though we wheelchair - one client ls biind. Though a imdbegin- dearly wanted eieven~yearoldSheela. paraplogic bom ning, it yields immonw ratislamon - in a way it is the ~ ~- abase. When she came. at reventeen, we became a two being a pushover can haunt you into eternity Force your wheelchair family. Most of our twelve (including three self to avoid making threats or promises you can't caq "adonted in rnt"1 have rome sort of ~hyiical~ ~ or em- ouL A modwav to let off steam inthe "needinotothroat~ tionai disabiliG. Usually the decinon war mutual and deliberate We fell we had the knowledqe and rerourcer needed to cope with -. -. each chiids unique rituation. Tunce we have had caw 10 romethingrimiiar is fine unth children old enough to know reget our decisions - during hying timer - but there you can't lor don't really want to1 do it. Generalk with- were cases where the full extent and impact of the prob- drawino- from tho arena ir host A whee1ch.r need not lems were not known before placement make you a captive avdience for an acting-out chiid ""1s There reemr to be a fallacy prevalent among adoption you let it. 11 learned that the hard way 1 workem today: ~peciaibneedskidr foi spacial-needs par- Remember. ,uou're okau Don't he drmaved when "our ents Ridiculous! This viewpoint also cats for plating ch% child becomes embanassed because yau're "dinerent" dren with revere physical, mental or emotional problems Evey child goes through a stage when individual difior with single adoptive parenb, rimply becaure nobody else encer of a"", hind reem to threaten his evoivlno relf~con~ wants them. Such placements are iairta no one. Having to cept. Let your child know you're okay with yourself and be content with i~cond~bestis the worst p-ible way ?a don't need the approval of anyone else - including him. bed" a relationrhio.. A"" . ch'ld needs to feel wanted-not If vou're not okav with uawsoif. think carefuiiu before just "settled for'' aaempfing adoption. Ido feel that peopie who haveadjusted to handicapping Children are quick to sense weaknejres and use them. conditions have lamed somethino which can be beneficial Likewise. don't let yaumlf he put on the ddendve be^ to a child who rlhas that rough rwd to me1The cause your child's adopted. You are the real parent if you disabled onen have more empathy and coping rkJL for ieed, clothe, wony and loue. because you are the one with dealing with such problems than roded normal p.ap1e the commitment Kids need a haak to hanu their~iohiemr do. We've found this hue in our own expelience. Our orthopedically handicappad children, as well as those with heahrelafed imitatianr. have been can/ to handle, simply because we have learned to live adve liver m spite of the licenred adoption ageny. Thaugh you cannot he legatiy Iirnihtionr my own disabiiiw Mpares. denied reMce by a public or plivate ageny because of our iamiiiari,y with Cflppisd Children'. Sewice5 and your disability you will he at the mew of the adoption DVR has been invaluable. Without them, our kids couid worker to whom you're a~igned.It's wise to isam an able to handle physical mrntenance hamade the more childxen handicappadby age, race, sibling status. physical ll1"<.",,,, 7itlC.. 91 v'i , ..:)I,. . . 1.,,.4..1...: in1 or mental condition. etc. -are wuall" mare oocn than I.d .. . ,n,mr.,, J'.. a,> itheis to m~ngn&-traditional dent; IC~Uyour state's 111 .>.i.. ^a,< :,," W"< Sex Let's Tell the C.Pk About Sex by David L. Morton - perfect image. ;owarb a potential mate, we & have an earl= 6me. Too &en, our parenk take the "Peter Pan'' amhlde Asking fora date can be abkkg deal. UruaUy, weshould toward dealing with our rexualihi They equate our long take a longer time to get to know another penon before dependency upon them with an eternal childhood and asking for the first date than a nondkahied Individual and they feel no need to provide sex education. we should not feel rejected if we are refused. 19R1NOLUbC 24 25 If a relaSonship go- from hiendship into romance, we bianirm, hue remanden& were added later. rerulnnn from have the rerponribili,y to make ow pahler feel comfort- able with hying alternative mothads of sexual exprassion. Kirsing, hug~ng,careing and intarcowre "a need prac tice and pahence by both palmen. those confinid to inmtuti&s. ~romthe several inquiries In some cases, when one or both of us is cerebral pal- addressed to nuning homes. I received only one reply, sied. we might feel tho domandr of maniage are too dlf~ scrawled on the boitam of my letter rtating that that ind- ficu1t and prefer a long-tern relationrhip. tution'r patients were "not intereied m sex" Others may choose masturbation and fantasy as an alL In today's society there aro many obstacles to be over temative toan intimaterelatianrhrp and they shouldnot be come in order for men and women to be able to relate discouraged. heely and openly with each other "I think men and The time has came far parents, teache~sand prof~io-rion~ women have been raired to behave in ways that awe a15 involved in independent 1img pragms to r&s that each other pain." rays one rerpandent "Men and woman [email protected] our nghf as human belngr. We should be able have been mined to act very differently. and when we're to expmrr our 5exuaIity within our abilMer and our limiL together It's really hard to be real people" tationi. Although we may be unable to feed or dr- our- I think there's a mowing awareness that we are ail just reluer. we are capable 01 being lavers. people attempting io grow and love m what often reems to -- be an alien world, and rhk acceptance can only be good Dovld Morton. nrebml~kiedHe huraBA. dewin rpeerh for those of ur who are Differently Abled. Meanwhiie, the onddrarnoond oMA in mas rnedto. Addm4545ForerlPark current Wneition of changing role ir a dificuit penod for Bouleuod. St. Loua. Mtsoun 63108 male~lemalerelationrhipr. Of coune. be~noa Diflemntlu Abled woman can~ add~~ ',,I><, co.,., mar. I, I.,.. .,lr..,Jy 'om~le* ",ore\$ rl I","#,111 Ib%rr.. *..,".l .,, I, i,il..l, inn, ll,,i..:.~rr$ ,\i~'...l (~mrlcc nu I>,>.* '(I' 5arr~50, "1 ,cc), , 1rt.t nl. 81. 1 "11, school as do their able~bodiedpeen. Our Ant dater or cuned on the average of almost four yean later thantheirr. and fewer of there dates were with hen& tmm ahwl. All Things Are Possible A partla1 reason far this can be athbuted to the fact that a1 the sixteen women who indicated "other" source of their fint dater. reven had home tearhimand four had anen& My book. All Thing Are Pornibie, war conceived in the summer of 1976, near the end of a long but stormy love our social circle & wide as w&ible. For teenagen,thir relationship with a fellow unitor who remarked carudy one night as he was going out to see another woman. "You think and raik so much about vour sexuaiitv as a - card catalog to see what had been unirten on rho sexualiv of dlrabied women. Beyond a few articles in vanour pro^ fesional jaumals dealing pnmmily with the chlld~bearing abilities of women with 9pinalcardlnjuner, there war vim- ally nothing. So, there war. in fact, a need lor such a book. I decided to use my sMlr ar a Action umtumtr to give an impierrionirtic sketch of what a group of anhapedically dlrabled women were thinking and expedencingat a *en mace in time. ILI,rvJ t1.r. ur mrc. I wn!c ir~urr.o rlc r.d#tu?ul s ri.c p~r"c!~mli>nn ll,,. The point of all thir ir that the mom we're in circulation. l'",~, ? r<0, ts,<.,,, d % ,.?~WF"@<.,<.r.,,, ,I: .,,Vd. \er. the more men we "a meet some d whom are likelu to be "dl YL<~,II<)IIII.I :P InTI- r mrm .ur#pdwp .%re ot lo, mahlre individualr who can appreciate hevaiuabls things REWILTArnON GALEIT we wish to share. Even if we don't meet the man of our dreams right away, we d,undoubtedly, develop lob of good friends with whom to spend spare time, of which there won't be so much lefl anwy For sure, it may be tougher for Differently Ahied women to initiate and main^ tain relationrhips, but it can be done Mv book. Aii Thinqs ArePouibie, coven a wide variety of expeaencer ~4thmany ape- of rexuality by women with orthopedic disabilities. It may be mdered hom A J. GaMn and As-. PO. Box 7525. Ann Arbor. Michigan 48107 for $8.95 plus $115 ponage/handling. Y"0n.e Dufi hm been ''~i#~mntl;Ahled fplto quad; since she he uns veem old. She har o B.A. in Engibh i+erdunfmm the U ofMichlgon. She U o vnbi -archer ounslor labbyin and pubilc~micerShe ilueraione wnh hercat MWon Student &"don* ome ~euernltima o day to help luith meoh, rmnrfer Yvonne Dulfv. criichur of o mmprchensivr con,pl!aion of *.wen- fins etc Addrw: 720E AnnSmt, AnnAibor M$chigon481@4 p~~p en<- ",it11 Sex"al,* 01 75 onh"ped,mlly diWhl?d women Female Sexuality Following Spinal Cord Injury by Lee H. Btyant, R.N The fourth chapter of InteMewr with 15 rplnal cord injured women by another spinal card injured woman war . . page-a-day reading. The hank diwvsrionr of their sexual- rearruringto read the ideas and opiniolu of other disabled ihi and sex liver had enormaus dWth and meat impact. I women. to feel that Iwar not alone in being ignorant and coniured as i went through the reha'0Mtativ.a procesr. This book trier ro provide anrwen that most medical pmfer rionais seem not to know or will notprovlde. Theauthor of the book is Elle Friedman Becker It cork~~ 51095.~ ~ hnm~ Accent Special Pubiicatians. P 0. Box 700. Bimminmon, Illinois 61701. Iwar asked to review this book about nine months after again. my spinal cord injuy, and now I'm ready tom, y, year Although the focus of this book is rpind cord injured later The iint chapten dircurring physical change due to women, it balk about all mobility impairedwomen when it spinal cord injwy went vey fad Those informative chap^ examines our sexuality It rc hard to iepl feminine in a ten were answers to rweral qu&ons and gave insight wheelchair or in leg bra=* with crutch-; and ye, Doctor. into my new phy~icalroli. WorWng info the third chapter there is more to sexuality than being able to get pregnant. war slower because i identified with what was writton. Someone had noticed the silent problems within the re^ habilitation programs -the blank wall of sexuality - a . ..1 I ., 1 \ 5 6 c, " 'ro*d ner r .:"on" wall that patienb beat their brains against and get next to 5m 01%.n.". r,'.n,n'~"m"c: Y. I..,rr.., ",%IS,... A" ur..,r llOi b'C rmr* *?.,", ~!rir,<,541 l "0 help in overcoming. n . 198iNOLM 24 Friends Around the World "Our society would be vey wteiul if anyone wuid send phy of Art' have me thoroughly confured. I'm be$nningh us copies 01 books on rehabPtabon." Nano Opoku Agye ark, 'Do Ieast? If not. who's wnting this letter? Regards mong, Secretow, Srriety olF"end9 01Menlally Refnrded and love hom (I think) nhno O'noiud," Word 7. Chev Children. P 0. Box 1124, Hurnosi. Ghana. West Alnca. Orchord Hospitol, Ballyfemot, Dublin 10, Ireland. Reference BSFMRCi3179. \V<\.""IiIl.<,nrull, :,r m.-",,on,> "I.."., .,,, "Having just been confirmed with MS.. Iam interested to ic urn3 Kt,, >I,,r.,'n(,.,',m6 *..,<',r ,5,.,,,.,? h .,. know what youdo in the Stater in order to see what can be r, 8 r 1.r1.1 .t ~,& i am .or4,rg .,, Re,*,,.,, 0iicr.r .. Unmna' In~xlrltl: Wnlls, I uar gong rL~r~~~o~uirirlm.ernnq (;me i C! II I, O111..p..~d8~.1 Iinr~:r.apn. i I..u #.,A rc '.- '0.0 i A ~k.y11 p~,nrr'D!., Iiu~~nj onrlHl>r,#eS~r~i 1. id'I 0 'c I r r h for VF DlhobCd o, ('?I :n..n., 18 .I.I,,II.; 9, Itam.,, k cia! -.vr i:nilla '.-...,$ v#.tr?. qri !oln?cr lo (mr .u I "I've been having a lot of cervical spine hhhble and. "I am back In the missions and aim working with the Indeed. the orthopaedic consultant confirmed bad durc de- Christian Fraternity of the Sick and Handicapped (Fmter- generation and maybe arthtitir ar well. Prescribed gentle nidad Ctirtlana de ~nfermm)here m ~exico. . . I" neck exerciser and inha-red heat heament fa emoan October I anended an 'Encuenm National' in Toned" and dircomfort . . . Hope your pLo conference has some and Father Salvador Rbom. a CarmeUte (and a qua&- Information for ail of uold palloi . . . Had a gieat time at plegicl. war prerldng at dl the reaionr. He Li the National Dublin Theahe Fer6u.i and managed to sw 14 piaduc- Asserror for the Fraternity in Mexico ...Some 35 d'liabied tionr In three weeks . . . My night ciasrps on 'The Philoso- people from all over Mexico attended:' Bro. James Mc- 28 RLHRRWAXON OMEVE Although lam "only" a pmra~le*, wabnyonr yardbehind high How to Get cwtcher, i meet wme bamsn whrh flavour mu -son for On an Elephant - ~ to India some yoam later I prerup-d that the broad eie~ phmt'r back ir more hoiplhble lhan the miniahlrr iaddie 01 a dromedary Alo Wokoun. Ph.D. N~verthelerr.I had feared anoher pmblem, before 1 saw he elephank br tounits in Amber How rhau I get an he high hack oi an elephant? I cannot dmb the hill of moat up like a moun~ taineei Therlephantcannoiliitme up by hlr bunk bcraus lam not by farm rl~mlike a pnn- or a rhp-umer I &, cannot dimb a ladder h the eie~hanirback. To muronow Ihad =.-p, ,", ,. My fear mas gmundless. At he elenhan*;' rbhon in Amber there war a solid ramp liks a Miway mmp oipon ptrr to which the elephants lor surish were drawn near lhe a height car or a ship Fmm that platlm Iiat do- on a bench, lvh& rovPo the elephant's hack. m rimpiy as i sit do- on my couch at homo. Amber's bamer for diabled wmnr war not tho ~hanl'rhelght hut some rwm to that plaiiorm. Fonunat~l~tmm Some time I know how h rurmaunl riain by mounting them backward. My landing tc any chair daer not ruggee a landing 01 a imd feather I1 Irddo- anwhsm. Imhrr imitate a hard landns ofa w~achuterBut thm slephanh of Amber ruldmtly were he mon still elaphanti in the world and rimdiike lhe brgertoneeiephanfi at Eiioia wlhout movement When 1 had ihndod on he ele~ ,410 Wokoun, an ow uses crutches bemum of polio & mddress. Oderiiolei Chobornui~Ld1333 182 W hove B Coff~y,S.M. Apanado 58, Apareo el Grande. Gvano~ "Our main goal is to provide employment We do this juoto, Mexico. by mnvindng companies and indurby of the value of the disabled as workerr. advl.ing for heher accessibili~pro- "Iam 40 yearsold, manieduth children. Iwar Involved In moting equipment and machinew adaptations and provid~ a hit-and~tunmotor vehicle accident, and as a reruit I am ins. hansoortation. . "We establish 'shielded workhops' and help disabled people ret up their owindependent mde busin-r. We due. suiloiementm.. Rnandal ald and instau home and rec- are not provided with jobs, as they are hard to come by." reation adaptations. Manlit Singh. C31, Jln. Venus. Star Pork. Ipah. Pemk "Once a yea< AVO-Nededand organlles a caliedon Maloylio. throuahout the counrm Ln 1980 th= vieided more than 1 milLn guilden. . "In 1927, an association lor dlrnbled penon5 war ertab- "We have 15 persons in management and admhirtra iirhed in Holland. The name of the asociation is AVO^ tion and 16 coniultanfs spread all over the county who Nederland (Actia Wncit Omnia = Labour overcomes visit the disabled at home and dkcurr their pmblemr in an everythingi. infomal way 1981NOL-24 29 "AVO-Nederland would like to hear hom disabled per sons who pian to bavel to the Naherlandr and to know what they want to see and do hare. We will hy to help.'' ', - C.F J. VulEter: Managing Diredol; AVONedeiIand, P 0. 1 !, ) Box 850, 3800 AW Amenjoon, Netherlondr t 8 -. -. I "As a disabled visitor hom Noway -on my way 'Amund the Worid' with my wheelchair - Ihave been much Un- pressed by the informative writings ~vblished in the Rehobifitotion Gomne and appreoate maiang ibiyour acquaintance." Ms. Solueig Fouler Kongleuegen IOA, N-4620. Vogsbygd, Nonuoy "Hello. Sm looidng for friends. Ym a rulvivor of the 1953 poll0 oulbreak in mithem Ohm.My inttrpm my- reading, movies. football, rewing, gofng for dnver. oo- cheting and my job. Hope to hear fmm lob of you people I'oA, ""per sleuths din, Cuinudeio. hinnill nicnoer and out there." Sandm lsondyl Bmnn. 10 Modimn Sheet <,,,"' Jon,, Lair Ikiier mmei deliver WElellir to Kiith "oo:s inghfi. Nowalk. Ohio 44857 Photo Cleveland Prerr. "1 am a registered "me and writer, currently dtabled by U.S.A.' and on the back, she wmte a note to the Pma myasthenia graa i would ike ia develop a wide for Post Office with dueto find the DaMr home. The clucr, of health profesrionals dewtibing how they can hewer help course, were the diredons to the old Davis home in jack^ patients deal with the piychologid impad of chronic, dii- son: 'Take road from town leadina south. aos raaroad abling and/or recumng drearer. if you are coping with backs. 1.n at comfiav . . . PGold ~hw~how. . . such a condition. Iwould appreciate communicating with Tum right at the fork. over the creek and up tho hill.' you about your expetiencer and feelings. How have phyii- "The branch manager. a letter camer. and a Pmaieri~ cal illness andlor dcabaihi affected you emotionally?What dent joined in the rieuthing. They 3l"dled maps and they factor, facilitated your psychalogiol adjushnenf? What followed the Jackson directions. By a rbnge coincidence. stager did you go through Ynce the onmt of your cond- the wong clues led them to our former home right herein don? What role did doctomornum play in maklngfhings Pama From them, a fomer neighbor &sc,ed them to more easy (or difficult) for you? What have you always our haure. Itacked down the nster in Mansfield and let wanted to tell your health ore workerr. but never had the the lady in England know that her sister war recovezing chance (or gus) tow?Please *me. iM course. Iwill hom a shoke." Ruth Davis, 9316 Snow Rmd, Porno, dve vau due credit in mv find work i" Rorheffe Kern. Ohio 44130 k N ,'154 Wet 70 Sfred.b4H. New York NY 10023 "I would like your readen to know that I am avrlable to help in the deigning and fabtiotion ofdevices which their padfl~lardisabilly demands but which might not be com- menially availabie." Sieven Konor. PhD. 101 LeJurgy Auenue, HartingsanHudron. New York 10706. Dz Kanor, a medical engineer is a consultant to United Cere- bral Palsy of Werkherter "Sve had an experience with our PM office that prover the oeoole there do trv to oet the mddelivered even if it . .~~ ~ means solving punies. "The punle beganwith an amclei hadwitten hr Wider Hoz%n?r, an English maganno for drabled penans. In the article. i gave detailed, nwtal@cdmtions for findng the old Davis family home in Jackson. Ohio. An English reader of the magazine pounced on the amcie as a way to Rnd someone in Ohio who might be able to find out why her sister in Mansfield, Ohio. had stopped writing. "She addresred tho hant of the envelope Mth the inmm- Flnl?k Lngrl. ?he Ga~one'sposlmon. shares "or ei,loyn>enl of plete address in the artlde. 'k.Ruth Davis. Pama. Ohio. your ,*ern ""d paricoids jioni uround illr ",",id International Conference on Respiratory Rehabilitation and Post-Polio Aging Problems 1 Cosponsored by Rehabilitation Gazette and Rehabilitation Institute of Chicago HcrbP* S Mami!. Dovn Fsil Elo+niu Mig Ca. ialrmuh. Mame Cohn Bkhoo. Llfarare SsRlrs. in'. Augur& Vokn B MrCawn, PhD. Stall SC#%~&, Lnglnar inleF mqqn.,ia Gpn.ral Camaraum N.u YO,* 'Eugens F Murphy PhO. Rehabll\(a8- WmrnngR-dl amid Dluelmm.", Spmm "earn". Adm,"o"aoon, NW YorX. N Y SLUiONil-ThaPlernr ACn,9rM"-d lah,"PU~ EHDIIIW and Pmoml SIrner hr Pal#oSdwn Faday Ortobe. 16. 1981 Emrdah-n MD.Cltairman. Ikpamml dPUylEal Msdl~ on#. Th. Ohlo Snla unw.miv Hap,bk C"lUrnbur.Olro $=ION Y - Pnmmen9 Pmbloms a, Polo Svmn *AiiuNolon. RN. Goldm8u.llr Mrmnll Hoes1 A,,#", GDidbr~M" Ann A Baiiw MIi. Raapuelt llm Snnngr imONIa hr fmddrk M. Moynoni MD. -an, Pmkm Phyncd R.h.bi,,lm*" wm Sn,,""% G-- Mldi~i". and R"hrb4,ili.m". U"irm,N of Mkhipvl. lin" iUhr Mlrhignn A"" A Boiiw M" Mov Jay Rull~X.OTR. RrhaD~IhUllon Muilnn- D~mnmc. Thm Joh~Hawm Haplbl. Bill#mori,,&nil."* *"gullo Aiba M" fHorner!4n!~. Pa*nlAa-..t.. GobarMrmo.d HW>.i U Amnn Fiuh- MD.Chmt PuimoilwSrMr Fanrho h Amlgor Hoqlnl. h.yCa ,,is rm. SESSION YI - Thi. Fubr - crn Modm Ownbaonal Ampiaaiher Tdd~MSsIUlr Chall.ny.*ICompl." Rablim Tomami"? H*"W B as*- Ma SeSs,ON ill - The P-"l Tehnoleol Am Pa., Gmoihvi Smnrer OBL,PIARCS Tarhniquer and heUm D~vrlomdDunng rhn Polla Cnb .Li"dl Bi.nirk. 5.eAali,anr Con~nmn,Bank. Chiagr .inoi. Apob, started to use a remirator at night and youfound renewed energy and zest. Many more of you, who have never had respiratory involvement, found yourselver with increasing weakness^ es. onen in the "good limb that had sewed you ra weu for so many yea. Each one oi you seemed an isolated incident, until you read Lam, Schneideir amde. "Those Passing Years." in the '79 Gazette If Mggered many of you to Wte to the Gaeeite in ameemeni with Schneider'r iuggertion that the Gm*, "ihich seems to be the IK~ polio Lnk." should ad K a nationai directoy of "simpad- co" and oxpenencad dodors. Schnsider's adcle relved as a catalyst for NBC's "Prime Time Saturday" program ofJuly 1980 on premature aging of port~polopeople. The pragmm mured a deluge oi letters to the doctors at the horpltak mentioned on tho program - Roorevelt-Warm Spnngs Rehabilitation Cen- ter The lnmtute for Rehabilitation Resarch. and Rancho Lor Amigos Hospital - requerting more information. To lead this search for information. the Gmnn started gathenng materid for a special feature onportmlio aging. The doctors on the TV program and disbied individuals were asked to wile amcler. Alice Mailhot (polio quadl offered to work with her doctor. Frederick M. Maynard, M.D.. Universiw of Michigan, on an arade. "Age and the Old Polio." Concurenti% Theda Carle irespimton/ pello quadl was working on a nmiiar amde at the Uaversihj of Washinston with her doctor and a thmpin Meanwhiie, an anerthesiologlsf'r meeting in October 1980, brought Dr Allen Goldberg and h's uife. DE M Faure, to St. Lauir and a Grit with the Laurier. As a pedia- H Blueprint of Cr mcian and an anesthesiolagirt respectively, they were con^ cemed about the number of children who were beina. keoi . 0" ,,,.l', I.".< ." .,i.n.vr r ,rc 2r.s In*.,..,,:<., : I##g .a,. For All Who 111,1,1.. n. ,,- :, .,,, ,:.-,,.,,.i, ..,:,.,, I,,,,,,.,, !><>,"<.-11 ,v,.,.,,,,r> A",., ,.. r.,<:%~rh hebins~ -~ ~eo~le . of all aqer and mer.. of disbilities to live at planning committee war iormed iDr Fauie, Di Galdberg. home Wth respimtors. Gini and Joe Laune. Don A. Ol.on, PhD. and Margaret Spurred on by the enthusiasm of Dr David Dichnron. Pfrommerl and many mps to Chicago resolved the details former Director of the Ann Arbor Re@onalResplmfoy and the problems. DL Galdberg and Margaret Phommar Center. and Dr Maynard. the Lames began to renousiy concentrated on the program and the Laurie worked an gathering the speakers and wmcipan*. CONFERENCE concerned medical professional and voluntay owanim r--~F- tionr made vey welcome and vnal donations. F ,w accommodating, making adjurrmentr and adaptdons wherever necessay. With cheer and precirion. Bruce Fendleton made cnnfless mpr lo and hom the .w*r in a iiit-eq11ipped van. With iWll and efficiency, Dr Olron's staff coordinated regirkation and the hotel and transpom~ tion arrangemen*. All the gaps were filled by the enthuiiarb work of DI Goldbelg's volunteen from the Chicago area and the Gozette'r "ohmerr, vvho came horn m,o. Misou". an^ rona. and California to hein. The problem of rerpiraiay equipment -unique lo his conference-warrolwdMthgreat efficiency andreas5ur- ance bv Liiecare Selvice. 1nc Jim Camobeu President. and hi$ representatiuer not only made amngemontr to have iron lungs, rocxng beds. and rerplmtar motors in piace in the respective roams but also m.ntaln.d a 24- hour equipment repair and replacement pa01 in the hoal. . . making the conferencehappen, but in making it a ha~en~ ins of great significance. This ~i~nihcan~~ir enthusiasticai1y expressed in lenerr hom your conheres and the medical people who anended. They ten of the warmth and love that permeated the days and nights of the conference. dmnq and between sedans. and that fill continue b pervade memories and iiver. "I felt" rayr Jymny Resnger ipolio quadl of Califomh. "I met 200 rnangerr and went away with 200 mends." "It is unique." rays Oito Bong of Germany "how there polio people fittogether at the conference, like a family . . . It is unbelievable what a deeo relationshin I have to the zative Cooperation people at the conference when Ihave only reen hem hr three or low days." "1'11 never be theame."saur Suran Armbrecht iresoira- Are Disabled ! ., 8. ,,a I."I. :n*r 1. ',r. ..r. 4 .I .~b... 1.- \,a i z,,pL ,,,,., ,, i IO.)~rr A%\aC, <<,V"",. ,<<<,"?,...,".LV... v,.<.,,,.,rlk ?d and Gini Laurie hee to go where Iwant to go." She echoed thethoughts of many who anended. Aithough she andmany dhars there THE FUNDING 1981 wiU be howas the year of budget were disabled by poiio and require a respirator d "ighf cueing. With no federal funds and unreceptive pduate their expenencer of increasing potenml sre relevant to all foundations, the Planning Committee decided the confer- people with dirabiiitie. ence could be paltially funded by askingtheparilctpa"*to Conference pamcipantsincluded expars hwn theme&- pay their owexpenses. Then Gini had the inspiration for ca1 cornrnunih/ - docton, nu-, accupationa1and physi- the "Brown Bag" appeal to you. the Gazeitereaderr. And cal therapis*; equipment specialiris: insurance people: and what n superlative response A total of 501 brown bags individuals with dirabilitie activelu involved in issues "bagged $6000. Your donations paid for a welcoming Toomey Remembrance dinner the fir* night rupplement- ed have1 and hotel expenw and wheelchair rental for many partkipan* and speaken who othenvlse could not in wheelchain and 30 of them use respirators, full or have anended. In addition to your $6000. Lifecare and partMime. .-- L. ~- Gin, iurirle <;a/,.",. rdlrni br; I< G,.niu,,. ill L>, s~.,",:,,,,>,,Sn~nil dlsrtriiiot jnlu~hi,iloiurd roih i.-r;oi> %nv ond iiliulln Stole i! . lii,lon. Auiiiry .I King. Oiitono. Conndo Lie* 1nd , Morguret PIronmer nnd Deburn11 Curiniilqboin KI Bath the medical exoerti and the ooiio sumvorr oai6ci- "We are ail amazed." avr Dr Ron DoneH (reoirnton,. . n01,0 .,_.,C 0, bk?.<,I .,.','~, "1 L<','d..L<.,. .,>*.i ,,, L, d-. ,..4,s A ,, "n: W' c,,,, Herb Mernii Mane, and Alien IGoldbrlg MU ilC>o#i REH/IBrn&TlOhl Grn lpoiio quad) of New Jersey, "war that the organken and the physicians as well, so nahlmliy mingledwith ur, leveled with us. it means a lot to have .ohvsicianr . bik to vou about your problems in such an informal adnosphere, without holding back it Wly war a bamer-hee environment in more than one srnse of the word." population' in Ontario . . . hope to improve respiratoy I> li.. >Lnp<.nreni .mc ,,9,l"l. ,mrlrr..n:,n'.*,>..,r I'm PROFESSIONW UNAWARrmESS. Both dirabld individuals and medical experis agreed that tho medlcal pmfession no longer understands the needs of the o~~ndjrabiad by polio. Many pamdpants shared the faif that they had been labelled "hypachondriac" or "neurotic" by their phyricians. Phoragm~hrby Gm Bong, Alice Bvrkhodi Eui FOU~.~~~t Giikn Govia HoMnon. Joe Lou*. Rehabiiation INM~~of Chimgo 198IIVOLUME 26 NEwORW. There war constant emphasis on the need for informal networks. We have mromehaw or another deuelL gathetins and supplying reliable information to both dis- op a networking system the< when someone is in fiouble abled persons and the medicd community "Thelong farm or in doubt or in fear, they cmplugintotheso systemshom rerultr," say* Di Eugene Murphy, "should be benehcial many different levels,. . nationally. re@anally, mdlocally not only to post-polios, but lo many other gmups with We have to come up with a methd of addresing this. other disabilitie~." othewire. at the next conference. there unll be a signie~ "Sociehi tends to equate ab'lihi" rays Marilyn Saviola cantly lower number d us present." lrerpimtaly polio quad). 'Lrith physical ability and maneu- verabiliu If one is less physically able, doer one bemme PUBUCATiON NEMiORK. Publlcationr and orgabtion. of r.5 1.1:180' 11'# ,ale mnn. ~ctr2.6,. rmli nrr dlml lrJ ~IVIWIIS .>re J YCN #M~;Y~>#>I.n* I. a % Rehabilitation Gazette Polio/Respirator Resources area. WEST Litem: US25 Wlld Oak Om=. Colorado Spnngr. EAST Augusta Alba, MD.. kjrarkte Dirarfor, Goidwater Colorado 80908 1303825~61181.11552 Knot Sbrt, Suite Memo.al ~ar~~tal.N~W~ork Uniwrniy center ~ran~inD. 8. Garden Grove. Calitomia92Ml. 421 N. Buihanancircle Romeveli Irlmd. New York. w 10044 0,.Aiba has ai 89.Parheco. Wfomia94553 1415476~11761.RR#I. Box ranged a rwc#alone~day cwiuution program for pololio aw- 310. 19131 W Whitton Avenue. Utchhld Park. Areona vivon 1212~750~6777Call beween 35p m l Uiocare: 165 85340 1602935.0616). Poiio SuMwn Foundation. Rich- Beale Sh-eet, Quincy, Marachurem 02170 1617472-4700) ard Daggea. 12720 La Reina Avenue. Dauney, California and 6226 Mynie Avanue. Glsndale. New Yoik 11385 1212- 90242 1213923~00341.Renah Shddai 350 Vernon 38170181. ThoodorandShart Dukpi. 315EwingSt. Pnnce #101. OaWand. California 94610. ton. NPW Jersey 0R5N 16(3192&45121. care services employmenf eh.. of Goldwafer's plio SUNiVOri Dr Bailey's survey of about 400 former Warm Springs polio people is rW under way. Joe Kauierr, PhD, an ep~demiologirtrepofled on a 1980 stud" of 186 resouatow wlio ruruluor, in Manifaba~ ~ ~ collected in the study and suggested new areas to be ~~ explored. A re-examination rhowed Ulat the majority of the 186 had stated the" maintained a $labia hlneoonal level. The minotihi who reported wo~ningconditions. wne of no particular age group. "The impae" he says, "of the ag- ing process on rerpiratoy funcbon requirn much further rerearch." EQUiPMENr John O'Connar vlce prerideni and general counsel of the National Foundation March of Dime. "We still serve the respirator equipment nerds d awwwxlmxltt- lb 700 ~~ort~ziolio~tients around lhe munrm fram our addresser are listed in the Penodicd Lkt at the end of lhir isrue.1 Accent on Liuina.-. Rn", Cheevec Achievement conni. Lampor. COPH Bulietin. Rase A Wflron: D&: abled USA IPrnidenti Committee an Employment of tho Handicaooedl.., . Robelf Gorrld: N4PH NohonaiNeiuslelto INational iLsmiation of the ~hrni~allyHandicapped). Sir- ter May Mahlda Handlry. R.s.M.: NoSonoi Hookup (Indoor Spom Club). Georgean Daa: Pomplegia Life INatianal Soinal Cord lniuw Foundation). Ann Ford; Re- h~biii~ti~~~menn,~ini JW Laurie. PROCEEDIN65 The Rehabdilation Institute of Chicago dl be publishing lhe proceedings. Neither the date nor the price is known yet So. if you wish to be advirodwhenthay are ready to order, rend your name adaddrev to the Gmene, which has a list of people to be notified. or to Dan A. Olson, PhD.. Director. Educaban and Training, Reha- biff6on lnrtihltt of Chicago. 345 East Superior Slreet. Chicago, lllinorr 60611. SURYEYS. "Waf wonderful work has been slated." savs not filled one oui. write to ~amet ell. patient Advocate. Goldwater Memorial Fhiorpitll, Franldin 0. Rmseuelt 1s- land. New York, NY 10044 or Chick Weher 277 West End Avenue. New York. NY 10023.1 doh,, OC~~~~,~~iurp ~rcrideridoiid (irarmi coiiniei Nar~niioi Alice Nolan. R.N., is woriong on a study of the home Foondotzon March ofOn?o. New York rind irnogene Pnrbad I981NOLUME Z$ 37 Ailrir= Desaerime. EUW lronre, n#>dh8s bmtiierin-!our .iouri>nn Ralhenbem, M.D.. Lyo,~.Frnrlce BLIIWOLIIME Z+ 39 Herb Menill iremiratoy polio quad]. engineer, "Life- lot 01 people that have slow p,oqersiue weak"-." care is hylng to repair the old equipment and keep it go- Dr Fi.cher empharlled that people's diffi~dties are ins because Drink- Emerron. Monaghan . . . have all ompounded because many dkabledperioni won't reium \,c.,,l:c' ".'b rr, r. p .al.iR .. I\."""?' to rehabilitation centers where they could be reassessed I3 , c A,, 'I, I . . 1,. $1" LV* !<.C.'' and ~utan individual ~mqmmr."I believe." he rays. "all <,,. e'<"a,,, l,f,> .,. ,, .,, CA<> c. D, re, .'>A, . ro to"! ,,,re 1 #.LI.,P..,.a,,,' "C 8 <.:<,.'3 are going to continue running for yeair and are easily 'PIC' :'. I,<').',,, "". VI .., . I....+ : 8 , i maintamed in any environment. . made of standard pans Ll,, rl,,l',. I.,,,!,, mc : r-r..,r..,,r ,...I... 11 ,.,,rs u&ng as many bdt for the ordinary consumer (and overuse?] in compromised murler." . . . ~ park~ market as possible." Theodor Dukes (polio para). insmmenktion eonnol consultant. 'The mastunpomnt aspect of technology is to provide for the replacement of loit functions . . with the underlying assumption that everyone wanb to be and should be ar independent ar poslbie." ADRmlNC UFESIYLES. Making value judgmentr and adapt^ ins lif&yler to orteoanhritis. tendonitis. bmiL and the other 1imrtationr *hat accompany aging are of vital impoltance. 0"rSel"e~. "if romelhing changes your level of function." ray5 Jay "As advocates." she ays. "we have mare todo thanwe Bullock, physical therapist, "mme depression is periecfly had to do ten vem. aso- because ten .wars as0. we did not in order and normal . . . You came through the fin! time. have the legirlaave pieces that we have hughr so hard to you can came through it a second." get. Now they are bringwhipped away hom us... It is our "Know yourself." rhe raw. "Be arsertlve wlh your dac~ rcroonsibilihi. to -00 back and talk to other diabledmoole ton and therapists. Tell them exady how you usually do . . . pants . . . profe55ionalr . . . to get involved in the your activities and negotiate around your own condition 1982 electiow ..to stop accepting what is going on tight . . . Leam to do your own pacing." now" agement of resmctive rwiratoy inrufficiencim,erwcially from an equipment and hame maintenance penpective. Current research and teament approaches to port-polio loss of rwnmh and endurance proinded rearrurance and informahon. DL Mavnard drcurred rerearch &am currentiv under way to define the aging phenomena, no*g that all body iunctions norma1iy decline with age, and that changer in all nelve cells normallv occur The chanareen in the muscle fiber, of a disabled person compiaining of lo= of strength and decrease in endurance are the result of aging super imposed on previous residual new cell damage from polio. "We need to investigate." rays Dr Maynard. "whatcan be done (or the lass of anterior hom ceUr with normal people in aging. and I think the port~poliopeople are an excellent moup in which to study Ulir phenomenon be^ cause you have became a laboratory group of peapie who are, perhaps, aging more quickly in their lames or 6mer or =.*,.-=.=a"*"- "There is tremendous variabilihi." he rays. "in the coum of weaknerr, it is far hom inevitable, and it is only vey slowly prcgessive . ..Keeping in genera1 goal con&- tion and taking time to ren may be the real annverr far a 40 I produmve liver in their own homer. Suq~eshonrwere entity: to manage services: LO coardinate federal date. and voluntav iunding: to di-minate information; to provide there will be a Magna which Qlver them the o&r~ canrultation through a WAE line for individuals and their tunleer which I think they deserve." physicians: to furnish tranrporktion for lhore who need . . ". . . in a developing country like India." wrote Dr A.K. Muhkedee. who had hoped to anend the conference. "poliomyelib ir $till a majar cause of dirabiliu me Ail lndia lndtute of Physical Medicine and Rehabilitation ir heating 2500 polio patients per year" All international vavelerr, leaving the country are urged to check the sralur of their polio immunimtion. . - meding andihe conlerencein ChmgoondromemSt. LovY for o week ro work on thk repon wit11 ~iniioune. the ~mette'r ACTION PLAN There war a mnrenrur that there must be a co-editor system to arrlriall respirator-dependent individuals to lead - ~~ - -~ Rx: Know Yourself Pmcfical Medical Advice for Euefyone The value of preventing problems by reif-directed, heaith- Medimdon. Avoid narcoticr. Take arplnn. Do not pre~ iui livlng war skesed by Dm. Alba. Bailey, Doneff. Fi~ scribe your oum mediciner See a physician. rche~Goldberg, Johnson, Maynard. Spencer and all the Neckarthritis. Looking up at peopie horn rittlng low in a other physicians who pacipated. Follolvlng is e digest wheelchair can lead to nerve damage and reconday of their practicai. down-to-earth r~commendationsand weakness in the hands. Don't wony Don't iufler Di admonitions cuss the problem with a physical fheirp,rf or a physician. .aging. "Lih is .direare," ayr DL Spencer "with a Rest, Take time to rat Nap during the da)nime. Shorkn mortality oi 100% . . . We should be able fa laik about your days. Take longer vacationr. gemng old without feeling uay'' .Respimtoy aid ot night Ii youi breathing mdes are .Aicohol. Avoid it. It may inhibit wailowing, intarfore with paralyzed or dirtofled by woiiork, you "ndelventiiat~ numaon andcaure faur if you do drink. do notdnnkjurt during deep and your COI level risa. it ism if you rore before bedtime if you have any rerpiraiory inrufficiency to an altitude of 10.000 fea or high- each night. YOU Coicium. if you are post-menopaurai. you should drink waken with a headache, slowed menfal concsnhtion about a pint of skim milk evely day and rho* of breath. With an appmptiate breathing udat Cold3 Dlink lots of fluids. Put humidity in the air Rest night, you will rest yow breathing murder and have There oid-fashioned remedies will do more for mucus much more energy. and raising secretions than mediwtions. Sedotiues. Troronquiliwrr. Pol There is a vey Ikye risk .Constipot10n. in addition to eating bran, "re a stool son- in taking any of them ii you have any rerpiratoy in- eneL like Coiace. Avoid iarativer. suihciency. Diet. Keep it sensible1 Supplement with one-a-day vita- Sex Same ar eveynne also Age need not diminlrh. mins and minemis. Skn problems. ii you have hrngur under your naiii, use .Exercise. Do it in modemtion, nwer to exhaurtion or Lohimin. - ~ about your abdomen or upper thighs. if you sit up vey keep your arm in honf not under your chert&ll which straight and wear a brace, have eladc put on the lower may cause numbness in youi arm. part ai the brace or till your chair Sieeplng piiis. Avoid hem. No sleeping pU has an eiiec~ .Frog breathing You can leam this vey valuable tech^ tiuenorr aker 23months. nique by raying the word "gup" or "gulp" way back in Smoking. Do not smoke if you have any rerpiratoy in- your throat - at Uio mte d 1W timer a minute with a rufficiencv Smokino causer mucur. Ask oeaoie around stop evey 12~15=can&. Do n about once evey 2-3 hour3 during the day lor 5 minuter. .Hypertension. Nothing about polio would predispose you to hypertension. If you have a history of high blood forward. pressure in your family, start on a law ralt diet eariy swimming. One of the most excellent 10- of exercise. in life. Veins. if they have uoubie finding your veins, have the .Kidney stones They are more likely to accur in people physical thempy depamnent apply hot packs lor about who are flat on their back. So, if you have to stay in bed 20 minuter. iora while. get yourreli turned hom ride to.ideregdarly. Voccines if vou have resoiratom suxeotibiUtim. ept both .Maintenonce. Find a gaad knawledgeabie physical theraptst andlor physician. Best to go to a place with a rehabdifation~medidnefocus and see a ~hvriahirt. . and a , ~, pulmonay rpecia~~~ave an evaluation while you are breethe and involves h&rtenrian. &d~diovascu~ardi~ feeling weil so you have a baseline. Diwurr horpihb ease and &bet=. if you are in a wheelchair, may tion ananoementr. tm, while wu are we8 so you and have to take as little m 800 caiories a dav, io avoid min~ they won't be unprepared if there is an emergency. tng weight 42 REWBiKCATION GAlElTE Warnings! Mkkie McGraw Learn to live with your llrnltatlol"S. Learn about copin9. about com, ~ensatlng. View the past-polio problems as a nahlnl asins process made more dlfffcult by llrnltod raewe. There is nothing rnysterlou. or masic about tho and it should not be labelled a Urge your doctors to respond to you as i whole person. and not focvs solely on your disabilihl Don't lose belid in your Invulnerablllhr. Balance is essential. Do not push younelf. Loam what you cro do and do not lose conml. It is no longer oecpssuy for people who are dis- ri",?o,if fi r>~,,orMU. diim,lro!og.l_hom iild0"ll abled to prove they can do it better. - -~ ,,!,l'l 7 ' lW'TMae Mffimlu har been djsabled bypKoslnce 19.53 wham ' iuar she a teenager A O!mm ollhe 1950's medjml~m, she ",or weaned from 0 mDimlorunds#nl home Sheam" .. - pioneered an an the& pmmm mkighiondviev krospi- la1 Bemure she 'brndiier uhat she oreoches" she did not pu,, hewrn ,he "most lo &"d both on on ihempy conference in Detroit and the pb confsrence in Chfm that almost eolnclded. in-d, she shod odhes cogent and pertmentrhoughtr Mlrhe hor beenan lmpOMnlmemberof the Garerfe stan %ilnceI begon in 1958 She 6 pmjddnl of it* non~pm,% comomnon. (See comer photo. Gam.1975.1 Kn,l,id C1,nslenzon MD. and heihurbv#>d.RobenB MrCown. PI, D . phvncbl. New Yo*. L481,UOLUME 24 A European View of the Conference Adoif Ratzka T ,.,. 1-. . C!I. . me , . \."<,, 'I I), ynl> ,I,~.I.. -.I. .I , i 8'3. i i 3 , 3.. I.. 1.1 r $1 I, . 'r . . 'I *.~.,..< n . l .,c. lo .,rp . . .'.T< ,*:v I J~~..~.:nmi~i; Post-Polio Symposium II Oakland, California - November 14, 1981 By Gini Laurie The positive r~iritof the first mrt~mlioconference reap- pearid in the&md cnnffreice, i~chR~nah Shndda - ananged at Laney College through the Oakland Cornmir- sion on Disabled Persons. Ronah. Judv Heumann and a 1 few other polio ru,"ivon had pdCp.tad in the Gorettek Chicago conference, but most of the par8cipanhand ail of the mediol oenonnel were from the San Francisco Bay area. Medical pemnnsl Sheidon Bed. M.D.. Raiph K Davier Medical Center, San Francwo: Madyn Diiraver 0.T;Elaine Huddon. PT: Allen Lifihay M.D.. Alta Bates Hospital, Berkeley: Leonard Policoff MD.. Pacific Medical Cent=r, San Fiano~co:Stanley K Yamell. MD. Si Mary's Hospital, san Franciwo. POLOsU~von JU~YH~~~~~~. JO~ ti. ~i~ Leinen. Esther Revnoidr. Renah Shndder, Maw Lou Spies. "Many tbeones:' rays Dr YmaU. "may expial" the phenomenon of weakness or deterioration of skengih oc- cumng 20~30yean alter the onset of polio. usually in limited muscle groups. "The late weakneir may have nothing to do with polio." II he rays. "but may be caused by ouen*ioh wealin-. Stunlr~ ii *n,ncll Mn. St Munr r~bs,ilzoi sonmzlrnlio, pinched newe root. mdta6on. or rompes3lon and be speni,,,g 0, tile oui,anci ro,,,errnce 1981NOLUMtZ4 45 relievable by rest, haction. surgery or other appropriate treatment A host of muwuloskeletai pmblems may occur as a result of long-rtanding mule Mbdance and wenk~ "err: orfeoarthtitir. xaliosis. bunitis. osteooororis. hmr- ,W".,<,, ,<,I l>,,i>l<~, :~. 11." . ,: p." Is, i..., ,%,in"<, <."<*ill,>Is., ,,.> m>.r.,n,pc:..,<, Pi <>;.I .I. LI I... m,. I ii many more around the caunw and the world. Mouth IPPV For Sleep Augusta Albo, M.D., Ameem Khan, MD., Mathew Lee, MD, FA.C.P Since 1964 Ule maionhi of the patient3 with neuro~ Problems lvith the Bennett Lipseal muscular direare followed at Ule Hwiard A. Rusk Respira~ Anchoring of the Lioseal. We have had some persons with toy Center ai Goldwater Memonai Horpi@l have been beards and mourtacher which interfere with a snug Bt breathed at night with mouth intermittentpasitiv~ pressure around the mouth. Far some we have made an additional ventilation (PPV]. The reasons for this choice of venhla. stranoina. . that amr uo acrosr Uie too ofthe head and lhen tion are mainly the pa*abiiity of the respirator and the ,?rrared , , .d< -", The Booneb Llpaeal during the night Othewise ;he an would escape trom hir Caialqju~#: 0730. nose because of an incompetent son palate in sleep. At Goldwater we remove the plash mpthatgws be- We have a young adult smliotic moderately obese hind the head at the love1 of the mastokis and add wo quadimretic fernale pobo who has mild weaknerr of her swaps from the comers of the lipguard -one going above soft palate hom the pollo. She needed to dore her nose the ears. and the other soma around Ule head at the level unth the index and m~ddiefinoen of her riaht hand when . . More and mvre respiratoy disabled pemm are using her nore with her fingers during rleep for a year or more this method of breathing m the communitg Here in tho after she began m rieep th~rway but at the present time United States Ule vendon for reroira*oni esujoment tell she no lonser nee& to & this. the nose during sleep. In both. nasophwnstir was pre during the day He then began practicing uvng it whlde he ent. The young adult female quadriple@cpolio needed the napped in the ahernoon. He would be babyrat at these noseclip for about two week this fall during an acute up^ timer by a neighbor He continued to practice for almost mer reroiratorv infection. She war aware of her not oemna six months before he was able to return the rwking bed and deep exclusively on mouth PPV, . . not ure the mouth IPW in hersleep. Shewenf home using a Bennen face mark with the head hames with which it dai huo months aker thir stalled and ;red it'o~and on cornea. She dro needed a size 28 French Bardex n-i since io prevent the secietion* horn ercapmg, but did not airway in one nosttil because she war breathing ptimatily realize he wan also leaking the air he needed far breathing. through her nose and did not have an adequate airway He hequentiy wakened during the night for his wife b without it She slept thir way far almost tua years, and ciean his nose. He began to fall OH to rleep duringthe day gradually used her mouih lPPV for longer and longer pe~ while he war using his $mail mouthpiece without the lip^ riodr in the evening. About two yean later she war able to real. When he slept during the day. he was so eed that he discard the use of the face mark for mouth IPPV and has was seen not 10 use his mouth IPPV effectively Hur wife been do,ng well since. had intuitively put him back to bed each day for n nap of two houri on the lipreal mouth PW and he would be Complications horn Mouth WPV more aleti for the rest of the day. Aemphagio. Occarionauy perronr who ma mouih PPV 1" The patient gradually developed tightheart failure and their sleep get air m then stomachs. However, they lind it a marrive generalized edema. He has requi~edhospitali- ation for the management of nephrotic syndrome and rupetimpored respratory infection. In the harpibl while he war slightly obtund~dhe war using his noseciip both abdomen - probably by the passage of flatus. day and night Ar he improved on diureticr and steroids in and Lip. Thms who do not "re the lipsal he continued to use the noseclip during rieep However Tension Jaw are u3uauy sleeping with an angula,ed mouthpiece that hi5 nose had became quite sore hom the orerrure. and his practically falls into the mouth when the head is supine. The lipreal comer with a xkaight mouthpiece. Sub5tihltion of an anguiated mouthpiece for the shaighi mouthpiece in the lipseal may provide even better acceptance. but I haw not tried it as yet. If you add the lipreal to the mouthpiece you will flnd it mask IPP~io consida the use of the iron lung or iti equivalent the poncho. or to have a kacheoitomy for bacheal lPPV Vital Siymi. Inc. (East Rutherford. NJ.1 has just pro duced aringie urs nonconductive face mrrkwith low prer- sure real (product #52501 with an equatiei headsfrap with constant csmidge assembly (product #9100.1 We have not had enough expenence with the mark and head- rhap to determine whether some modlicatiansare needed for long term we, but it appears promising. Learning to Sleep with MouauUI IPPV -. intervals for increased moisture to lwsen secmions. Since tho arwe quoied on the hr;t page of thli papor war an winen we have had ocraiionai person who has re- Portable Ventilaton quired more time to be able to rleep this way If you use Paltable prwure or volume v~ntiiararsare the most prac~ the mouth IPPV while awake dutina the dav with a rimoie -. tical respirator, toure although canrole madeircan alra be mouthpiece for several houis, your ability to use it during used. The wflabie volume ventilator can p-nt a prob- tho night will improve. lem The unit', the first model d which became available in 1978. does not have the high flows that the partable orerrure ventiiator the Thomoron bantam. has. You ihould set the unit at a tidal vaiime of at least I~OO~ZOOO REHARILmATION C-E cc. since much of it will leak out of vow mouth and oorri- 'From "Manworneni of Respiiahni inrufncioncy in Spinal Cord 31s ;J.,.<,~ ~r#'~$o:at,,-a!n?j I ,..+.t(h.,\ ..#.,,,e Lesions (A Study of Su Carer of Pml-Tmurnahc Qua&~~l~@~ . i' .d~,.+.,rw, ,i#,# dC?.,<. 8.. ,em., .,".I.>C, with UPPD' and Mid~Ce~ccihlons!:' Dm. Augusa Nba. ."'. ,r.. I'lrnl", ,I ,r ma no\. il,', : i,,, Marcel Solomon. Fheda 5. Tminor Spanal Cord lnluy Conier~ ,". ~ .~ , , to a iower ieting. ence Veterans Adminiibntion Horoiwl. Bmnr NY 1969. One more tidbit. We have had one penon with muscu~ jar dysuo~hywhore cheeks ware weak and therefore con- riderabie amount of air ercaped around themouthreal. He had to use the Thompson bantam or portable pr~uue ventilator because the hish flow aliowed him to flii uo Dr Albo ~klot~~hentol~ehob!l!la~i~in~ed~ hir cheeb with air and the pressure of his cheek inside crne andhoriok Pml-or of Ciinrcol Rehabiobtion~#dio"< the mouthseal provided a better seal than the mouthseal ond DenMRi New Yo* un,uers!tp Medim1 Center Goldivarer alone. He war not abie to do thlr viih the voiume en^ Memono! Hor~#bLFmnklrn D Rooseueit Iriond, New York, NY tilatar because of its lower flaws. 10044 iCo11 between 3~5pm Emtern iime 212~7.W4777) Since the method dependr on a conditioned reflex Dr Khan Is Supemblng Phyricjnn. Hauord A. Rusk Reotmtoy which is merent in sleeo. omrani on mouth IPPV unlholjf center Goldluotei Memono! Ho.p(tal and must not be acutely s. How to Make a Cuirass Shell That Works Dr Geoffrey Spencer: O.B.E., EFA.R.C.S. The cuiiass shell ir a convenient and well hied device hr when uptight but have houble on lying down when their providing mechanical breathing airirtance. pamcululy at vital capacity falls sharply, often b well beiow 1%liwer. night for people with rerbictive rerplratoy iwuficiency A rocking bed allows them to rleep easily and comfortably such as follows poliomyelitis. "Remidive rerplratoy insul but is not easily bansported when havelling. It provider flciency" occurs when the Vital Capacity (biggest poirible insufficient breathing aid for people whore vital capaciry is voluntay breath without hog breathing1 is greatly below much below 11ih-e. "0-1. A cuirass doesn't help people mh lung disease The Lung: An eficient breathing which [Chronic Bronchitis). UsUali~necessaw. at loart for sleeping, for patian6 whore As a rough general guide, the rk of the vital vital capacity is between % and d like. Tho Iran Lung a what reathi" gaid,r mortruirablo. Aflt large. cumbenomeandunsuitable forhaveling. ltalroim- young man usually a vital capacity oi over A paralyzing iiinerr can reduce ihe vital capmciu to about the and cannot by people who ha"e 2 liwr without causing remur breathing difficulty ~e ween 1V' and 2 lutes breathing is uruaiiy Tmcheortomy and inremittent Posltiue Prwure: If the needed dunng chert snfectionr or other intercurrent iUnerr. spontaneaur vital capacity is lerr than a quarter of a lilre People whore vital capacitiessro below 1% Uber or this is undoubtedly the bert method. Suitable apparatus Iata come to need mechanical breathing at iemt dur for home lPP R. via a hacheastomy is lerr readily avail- ing sleep. able in America than it is in England which is why many The standard methods of mechanical bieathinq =id for Amedcan polio sufferers with vey low vital capacities get 8." 8." :,.,"'.I. ,p nrz ly u,r 1lo.l I.,.",, ,l 8 3 I ,,.J ,mod. nil",.,,I.,.... rr mo .r"e Gloaaary of SCI terms. ~omplegic('para" - a person direare. If it is an iniuiu. tho level of lniurv to the roinal whore legs and pan of whore hunk or torso are paralyzed as a result of spinal cord iniuy (SCll or diioase. Quodn- pfegic or tetroplegic ("quad" or "teha"l - a perm whose legs and a pan of whare trunk are paralyzed and the thoracic ur chert area. and L? at the third veliebra in whone hands and arms are paldally or completely para- the lumbar or lower back area. Urudlx there is loss of lyzed, depending upon the level of lnjuy or extent of the funchon below the level oi injwy 50 REHIIBllrTATIDN GAIEm bvJoeLaurie EauiwmentlReaders' Ideas ~ -. ' -- . The Rehabdibtion G-tte doer not nmpl on9 odue*s6sm9. Thegad@ ond denim plerenled here ~regleaned by the edltomlmm renden' ierrers0"d olhersourceP They .npmntedarideas/or'he madddtopunueontheir own bysndlngjor bmch"Werand iM prices. Th* Garewe does nat speci$wiiy endone my ~roduonor ocrep, rerpon.blii,yJC"ony mPPrn*rnOb nnce w. Mobility Gene Neiron, engineering derign conrultanc became a C~6quad twice - hefirst time ham o football acddent in 1936. the second time in 1956 from arachnoiditir at the rite of the ~tiginalinjury In bemeen, he war ambdatoty. 1 , obtained a degree in mechanical engineering, worked at , an aerospace Brm. named and raised four children. i"- In the 1974 Gaeette. Nelian mentioned his well end- +.~- neered home and described hL projroiect to develop and ',I market a reclining, powepowe~dwheelchair Since then, he har embarked on a new career w a of mechanical endneering at his alma male5 1 , San Diego State Universiw The Depamnentr of Indubid Stud- and Mechmld Engineering are using We of his 1 ' . . ~ experimental designs asstudent bainingpo~ectrand seek- lng hinding for the conrhuction of pmfotypemodels to be tested by dirabied shldentr on campus and evaluated by ~ ~ Sharp Hospital and the VA Horpitai. Ceilhg hoist created ~~~~rlrumrilenlni aiito shoo hob^ gamge doailmiXs ar,d Novv hclrimler reirur rlmngs elevator or ramp rystem, locking redmint behind the steer ing wheel and dnving conhok lor operabon with Ijmited muwiar apsbtbv. CEILMG HOST "I have a cornmeicid 500 lb. chain hoist as -used in auto shops for iimng moton out of car.. ~vailabl~ j at any machine suppiy dealer under "Hait' in the yeUow iI L ~ager.The hack k normally ured for rgding garage doors. 1 and is available hom building hardware rupiien. It comer with brackek for mounting to wood or metal beams. Mine wan built during mnsmcdon by running a heavy wood beam acmrr the upper pomnaf my bedata7 ekvaeon, and hiding with the ceiling plaster B rok into a EI-t Emenmenlor eisctnc powered rrcllillrlg ulheciclio,, duting the day The sling tr a vanation of the helrmpter rescue sling used by the Navy A smooth, plastic rovered ELECTRIC POWERED RECLWG WHEELCWUR. The design chain sling fit3 under my arm5 Another chain with a large win incoprate a recllnmg backrerf pivoting at the ap- tubuiar hook tuck under my knees so, when lifted, Iam in proximate location of the hip joint, and a seat that will tip a seated position for my wheelchir or shover chair" up on the honi and move slightly foward during the iun For brochures and hitter detaUs, unite to GeneNeBon. haif of Ule recline cycle. The sat will then renim to holi- Profesor; Department ofMechonlmlEndneenng, College zontal and move hfofofodat the hill recline positim. TMs of Engineens, Son Diego Slate Uniuemity, San Diego, coordinated movement will retain theoccupant in the chak Calijomia 92182. without sliding out or being subjectedtoshearing forces on the back or buttock. HOISTS AND THEIR USE Here is another of the practical and comprehensive -dies of equipment which Lady RmOMoBILE C~~lONFOR OPmnON FROM WHEEL Hamiiton, Chairman, Disabled Living Foundation. has in^ CHAIR. The study unll inveagate the feasibility of using shgafed. The 318-page book was written by MIChtidne a compact. tmnt-wheel~dlueauto, modified to provide Tading, an occupatiand therapin. and iliusfmted by Mr inneased head ci-nce. and equipped with a rear en* W. Brennan. Thoush the hoish dernbed mav be manu Communication (Mobile. eiecbic and other overhead. and baLhi, methods HEADPOiFmWRNTE7 FOR NOMiERBAL PERSONS. A nw optical headpolnter developed at the U of Tennessee Rehabilitation Engineering center has been hrumoiated into a ship printer by Prentke-Romich. When the head- pointer. which is mounted on the ride of the head, is dib rected at a panel of letters and numben. the characten WHEELCHAIRS AND ACCESSORIES Comprehensive, well il~ selected are ptinted on a narrow ship of paper The printer iushated guide to selection and maintenance of a wide weighr six pounds and is operated by batted-. Far more variety of wheeichairs. 1981. 130 page. $7.50 + 65C infomation and brochures of other environmentai conk01 portage +om Accent Special Pubiicotionr. P 0. Box 700, systems, write to Bony A. Romich. Pwfdenl. Prenth Bloaminglon. lllinais 61701. Romich Company, RD 2, Box 191. Shrew. Ohio 44676. OMNlLlir SYSTEM The combination oi a portable auto- TmMG BOARD A 14 x 18 inch board. named for the late mobile lift and a portable indoor adapter stand taker care Hai Roe. who was cerebml palsied. mrtr $7.50. but the of goings and comings everywhere. The auto lift which charge wll be waived far pe~ianrwho can't afford it Tho weighs 10 lbr., needs no installation and ran be mounted board is produced and dtshibuted by a Masonic Grotto in quickly on any type of automob'lle lor eanrier into tho St. Paul The Grotto provider the raw board and the mem~ front rear or driver's reat The indoor endweighs about bar of the Groao oreoare the board for nmtino. "At the 12 lbr, and can be used tohanrler hom wheelchair torofa. bed, iub, or toilet. Free brochure homAme"mn Lift Cor porofion. 1223 South Sonta Anita Awnue. Arcadin. Cafi- fornia 91006. and he'filis orders idr B"td". Many of our sister am around the counhy order boards for persons in their om^ "A-TESED WHEELCHAIR V&b LyiS After extensive safety munitie as a part of their locai humaniranan projem." tertr by Texas A & M Universiu the VA RehabUitation Fern Metcalf. Tolki~qBoord Commitlee. Ghom Khon Engineering center in New York found the foilowing iih Gmtto, 2245FremontAuenue. St. Poui. Minnejoto55119. meet the safety and quaiity standards published in Federal Register Volume 43. Na. 96. May 17, 1978. TELEPHONE A15 AND SERWCES. Telephone companie around the counhy are reipondhg in a variety d ways to .The Braun Camoration. 1014 S. Monticello Sheet. the needs 01 their cu*omerr for aids and wrvices: Mourn Wtnamac. Indiana 46996. Models 80~L-3W.80~L400. 8O~L-4OOXC.80-1-500, 80~L~5WXC. .Collins indurbies, Inc, Box 58, Hutchinson, Kansas 67501. Models W28LA-9. W28IA15. W28LA20R. direct dialed calls to customers who use a teletypewriter W28LA-26 device. it has airo eitabiirhed an Operator Services Cen- Crow River indurbies. inc.. Skyway PI- Office Buiid~ ter which provider operator midnnce for users of TDD ing, Suite 1, 1415 E. Wayrata Boulevard Waptt. Min~ or TP(,Paciec Teiephone Company has a new remice nerota 55391 Models 1976~L~A.1976RA. group. Handicapped Cenaal~edAssistance Poinir. which P&Q Lifts, inc. 4457 63id Chcie North. Plneilar Park, provides individuaiiied mnruitabon on equipment and Flmida 33565. Modei GMF also offen MCM device, simiiar lo mr.which have Ricon Comomtion. 11685 Tuxford Sire* Sun Valley, readouts akin to pocket calculator: New York Talephone California 91352. Model R30-A has rolled back itr rnanfhlv. charas- for vaiume-control~~ ~~ Target Indurmes Inc.. 55 Newbeny Road. Warehouse equipment: nlinoir 8eU opened an accwjbie Communi~ Point. Connecticut 06088. Modei T500. cations Center for the Disabled in its Chicago comprny headquarten that offerr indvldualiied b~-Iinguaimnruita- For Further information. wite to VA RehobiiftdueEnd- tion on its special productr - which are ofhred at nan~ profit monhiy mter - and ton-free numbers for voice and TDD. Cail or wite your iocal company and ark about i~ special rervlces. dlwounb and bookletsfor itsdirabiedcur- New Yark, New York lOODl. tomers. if your company has additional special remces. let us know w, thatwe can share them in the nextissue ofthe Golee. ImERNATlONAL COMMUNlCAnDN NEWSIRIER provide a 52 REHABiL"4mON G- lorum lor the application a1 t~chniqliesand aids far per sans who communicanon dirabi6tier. The quarterly is $10 in the US. and $12 outside the US. For . .. a send a check. payable to MSU. to Com~ anyone out there who is interested Iwould personally be n~urdwriur~Outlook. Artijdal LDnwOge Lobomtorx glad to olfer whatever nu!rmncei can: ~dwordFriedlond. Computer Science Deporiment, Mithigon State U, East PhD.. Kieli Software Corn, 21 Millbrook Rood, Stony Lonring, Michigan 48624. Brook, New York 11790. IDi Friedland. former profeuor at U of Caliiomia. Berkeley, Senior Scienbit at Brmk- MICROPROCESSOR-BASED CONTROL DMCE provides an haven National Laboratory and Senior StaH Officer. Nb automatic phone, alarm ryrtem. and envimnmentd con- tional Academy of Science, r author of KreU'r College trol The basic price of the Abiiiu Phone is about $2000. Board Preparatoy SerIer.1 without options. For a brochure, write to Basic Telecom~ Cowmdmd. Fox municohons 4414 Enst Hamny Rwd. PERSONAL CoMPrmRs. A clearly written 10-page resource Colllng Colorado 80525. guide, Personal Compurers for the Phymimlly Dishied, is available free hom Appie Camputei. Inc., 10260 Bandley UNIVERSAL TELEPHONE ADAPTER. "My new adapter gives Driu+ Cupertino. Colfomio 95014. It answers many qua- complete telephone indewndence to a high-levelquad or eons and lists sources for addmonal information on user by anyone else without hand us. It can be used on a regular people who are physically dirabled or vliually ar heating ohoneoraroeakerohoneandon the tiqht ortheleftear It impaired. CON-CT SOFIWARE BY DISABLED PROGRAhWERS A now assistive devices among other disabled than in making a company. Dlabled Pragrammeri Incomorafed, bans and voy profitable bunneir . . . If you need any special de- emp1oyr progammerr, pmariiy disabled, and reek con- uicer. I will work with ow two other engineerr to create tracts on a time and rnatenal bark For a bmchum, write to them lor YO"." Arih", Heye< Prerident, EIIensians jor Tom Puono. DPI, One Wesl CampbellAuenue, Suite 35, Independence, PO. B-3754, Doiuney, Cofifomio 9024% Compbell. Califomio 95W8 Computers Respirator Committee an Personal Computers 8"d th. Handicapped RESPIWTOR HOSE EXTENSIONS "Since palio in 1953 1 have ICOPH9I has been organiredby twa dubied individuals. used a chertpiece with a Monaghan hospital respirator. I Tom Shworles and Margaret Phommer to prouide an in^ have no use of my ams but I can waik ail amund our formation exchange among disabled individuA who use Wo&w house with mv hose extensianr connected to the com~uterr.The exchanqe will be efleded hughmeet- .,...,. .., The Best Years of My LUe By Huold Rurrell with Dan Ferullo. Paul5. Edkron. Pub- Bowe, an outrtandiny author who happens to be deaf. has lisher, Banell Bldg., Middlebuy, V105753. 1981. 178 pp. w"en inspiring profiler of six people who also happen to 1$11.951 Harold Ruriell has crammed a lot of living into be severely disabled. Thee Ni people have accomplkhed the yean since 1944 when he had both hands blown off in featr which would be outranding even for nondirabled an exoloiion at an hvcamo. Thir book. wilten with the people. Their dirabditier indude paralysis, dcaf~blindness and mental retardation. Their abiiitier have helped them become a poiitical acti&, a theoretical physicist, a sox counselor. a busboy in a restaumnf a paet and a neura~ chemist Bows has emphaived the ab'liitier and accom- plishments throughout. In addition to rw prouler, the baak includes a foreword by Dr William Glasser, author of Reolffy Thempy, a pref- ace and finai "Renedonr" by Bowe, a iirt of agencies sewing the disabled, and a bdef bibliqiraphy Bowe'. H"al for other amputees. redon contains a kt of charactenstio he believer the Rurreil'$ book is exiting and fast treading although succsishl disabled person needs. These include drive, pa^ hi5 use of the first oemn nanative is Eometimes a bit tience, sense of hmoc education, rehab'Ui,atian, suppar- awkward. Tiur biogmphy unll be erpeuauy inter&"y in tive paren*, cudosity information about disability, accei younger drabled adulk who may not know what it war to technology, realistic sense of reif, practical and social like bein. disabled before the beolnninoroltho civil dohk intellioence and hiendiiness. far the d~sabledmovement. Brimming Over By Grace Layton Sandness. Miniworld Publications. few pager. But far the mort part this book ir intererting 9965 Quaker Lane, Maple Grove. Minnerota 55369. and inrpirational reading. 1978. 303 no.. . 185951 Dave and Grace Sandners are ex- ~:.t..rtl llll r'.,pl IOPI, IOR < anwnq nn3 i"<"""r, 1. I.pll,. u In Ci.,-"'w no,, -1. :,..,I I,,,. i.., ,..-,111 Courtesy Needs of the Disabled Customer l,,@d at A"?" ,A<,," WP It .,""*, ,\ #i,l,, ,I.,,.,, " ,<. <..,J Develaoed bv Sue A Schmin Stout Vocational Rehabili- adjustment and her establishment of a meting card line tason institie. university of wirconnn-stout. M~~~~~~ developed fmm her odginal pen4~mauthdrawings But nie. Wkonrin 54751. 1980. 107 pp. ($101 Thk haininy the rtoy reany begin$ulth themneoduction of Dave. There manual for studenk prepaling to enter the hospitality iwo caring people were soon mamod and over tho next indurm/ war prepared ar ajoint project ofthe 5t0"f Voca~ twenty-three yean adapted seven children. among them tionai Rehabilltation inrtitute and the Depairmenf af HabiG two hom Korea and one hom Viemam, several of them tational Resources of the Univorsiw of Wisconsin-Stout handicapped in one way or another They also provided a Thir project also produceda riidelround rede on acces_ tempoiaw home for numerous "mayr" and lonely rauls. ribility and a coordinated videocasette providing painter. Additionall"., the", were inrrmmental in ertabIirhin.3-, a o"~ for sewing the disabled in rertauiants. The lo*-eight vale adoption agency slides are available for thirty dollars and the videocasselle Grace Sandners tells tho stow of thi loving famiiy with for fiflyfiue tiouarr. These mated& can be "red as a honey and opennes. The mubled time as welt as the package for an educational course. joyour ones are there. Gram k not only a wile and mother Divided into six chapters. thi cwriculum guide lists but also an obviouriy blentedwn~,Tbrouyhout the book goals. matetiair and insbucdons for the teacher in each she maintains the suspense and excitement as this &ow of chapter gowing kith and commitment unfoldr. The text is well-prepared, informative, and concira. It pmvide a good foundation to guide thore who are mi"- Comeback: Sh Remarkable Peoole Who in ~.~~~ ing students to work rerQwants and hotalr. Triumphed over Dloabtlthr By Frank Bawe. Harper and ROW.PubUrher.. 1nc. 10 Ea* Driver Education for the Handleapped Md 53rd Street. N.Y. 10022. 1981. 172 pp. ($12.501 Frank Prepared by David G. homer Mateflak Development REMILITATION GN- Center. Stout Voca~onalRehabilitation Institute. University book are lawyers, teachar, farmerr, rodai worker. and of Wisconrin-Stout, Menomonie, Wisconsin 54751. 1980. almost any other promon ihat can be imagined. 63 pp. ($3.501 Th%%ddnver duca%n mnnual war vmn~n Thraugh the wide range d choicer pumrd hae. the by the Safey Center at the Univerriy ofWirconrinSlot author encourage each individuai to realm and deveiop far use in their course lor teachers d dnver education. his own option% It is alw intended to help disabled sh~dentslearning to dnve through the universihi'r program. n~h.book ts set up Your Dog - Cornpanlon and Helper in tweny-six ierronr. Each 1-n cantainr behaviarai ob~ U;\I . u ?,..>.<,II ,,. t~.,,,,,.,r I' .,,., AI,,P* PC',, iectlver, an onentation or redew ~ction,an ~~tlaneof 1111- :, I .;,:,I li,,i<, L,".l,, I c,,1<.,.0., dl 51 Ida: Llfe With My Handicapped Child By Uiia Bond0 Translated from the Danish by Eliiabeth Mills. Faber and fa be^ 99 Main Sheet. Salem. New Hampshire 03079. 1980~128 pp. ($8951 Being the par -~ ~ ~ enf of a dirabled child can alrnort rniraculousiy endow a teachinavaur dwhicks. nve1ingunthyourdogand work- person with the courage and inventiveness to cope with ing on advanced mining with your dog. that situation. Or maybe it is me ihat Godrend. "~pecial' This book b fascinating reading. It opens up a world of children only to "rpeciav' parents who have the ability to possibilities to disabled dog lavers. The resdder should be adjust. In either care. Ulla Bond0 has approached the 10". forewarned that he may be moved m upiorethm wrid by ing and rearing of her Down's syndrome daughter Ida. acquitinn and haining his om campanion and helpa with a determination to help Ma develop to her fullest potential. In this bark, she recards far us her daily eflorbtrin Your FvNIo this direction. A Guide far the Handicaooed Teanaoer Bu S. Notman Ulla Bondo has wnnen in dea about the daily haining of her mentally diiabled daughter in hopes of helplng other parents of similar children. She empharber the .. . . -. , amount of patience and time requued in teaching Ida the to be when you grow up or if you are grown up and want rimplen task, such as eating with a spoon or using the to be something besides what you already are, th's book is bathroom. She records the family'shushahon and ehaur- for you. Dr Feingold and Mrs. Mier have put together r tion. However, rhe also sharer the joy and plide that ida qwde to hell, both disabledand nondirab~edper- has brought to their liver. Lon$ reie;t careers that are tight for them, to get the ha in^ This stow of a loved and lodns mentallv &bled chid ing needed and to find the jab that they have prepared for ,~a19, ,,,. Joyce KniKen has been q~odfipiegichornpilo since 1959. She The pmfiles. bared on intelvlewr and wnaen to a lap receiwd o BSEd degree in 1975 horn Abiiene Cheston Uni- extent in the interviewee' own words, areofperronr who. uemm nndrhe hor begun uurkon her -is She boteacher despite the& common in]-, have found widely diverse and heod ofthe omdemic depamnenl of TheBndge 1" Abllene. ways of coping with there injuries. Rep-nttd in the Her addm k Route* 5-45. Clyde T- 79510. 55 Coping With Hospital Care Edna B rean, RN, For disabled people, the problem of a safe hospital stay shengih can lose thir during extended bed care if they are can be vey sonour. Someone admined with pneumonia not ranged at least once dally. Alio. ,oini conbactures are may be discharged compietely cured, but with m abm- always a dirdnd and unpleasant poaibili@if range of mo- Iutely ruined bowel promam becaure Idhe "needed" tion is not given regulaily, or if parition changer are not enemas (how elre can he move hs bowels??He's pom~ performed. Remember that ifYO"arem anacute careunif Iyzed!i. Or someone who b disabled and deaf finds that he medical staff are vey bury miing to rave your life, hence cannot sign Rat on his back. and pencil and writing tablet these other considerations may not be $0 high on their do not help him because of his limited arm~handfundon agendas. I have, in wurkshops for nurser and other health prof-. 6. I'd like to engrave thir one in marble: ark your doctor rianals. listed same problems which can be completely to wits an ordur stating that youi anendant be allowed to prevented if rfaii, erpenally those in intensive or pulma~ give you routine daily care oven in an intenrive care unit nay care uni* knew about them. Icail this kind of teach- This will glue you real continuity d care and relieve the ingihe "buckshot technique" -thatis. a'e htormirr. You highly spedalhd stdl fcom time~conrumingand rpedai are much safer if you know what should or rhauid not be "routine" care. Explain to your doctor the advantages to done toifor you in hospital. Hence thir adcle. you and to the rtlffof this unorthodox plan. Explain that The time to ref thir up is before yo" need if. Talk it wor your attendant is already familiar with your daily cam and with your physician ar soon as possible. Consider it part of can work unobhwively and quietly yaur routine med~calinte~view. One disabled mend took a 7. Skin care for quad. is really rpecial. It mean5 that checklist in lor dircusrion and his doctar war impressed you cannot be diagged up in bed by your arms la time- enough to make it part of the intensive caie unit protocolat honored horpiti technique!) and that this shears your the local hospital. Thls checklist should be included in your skin, leadng to reriaour damage. It meam that you cannot medical folder and should accompany you to the hospital be placed on a hard X-ray table (isn't that a redundancy?) if and when "0" are admitted. without careful skin pmiatection or you will pay a hsaw Here are some items for your list They are )"tended to penalty in prerrwe sorer. If means that hanrfers ham gur jog your memoy and to help you come up with your own ney to chair to bed. elc.. murt be done carefuliy and that specific need.. rtaff with sham jewelu broken or long fingemsiir iro iash- 1. Any rpecial dietary preferences. foods you don't tol- ionable "owl. etc. can unwimngly mure great harm to erate too well. e~. you. A foam rubber pad leven 1inch ihtckl ora rheeprkin. 2. State he length of your ruccerrful manaqement of neither of which axe X-ray opaquo, can make a huge djf- your disabiilty so staff can bust you as a source of informa- ferenee lo you on these hard surfaces. tion on your rpecial needs. A thumbnail (be really brief 8. Staff should know if you have portuml hpmenrion herel and mecific account of howuuu came to be drabled ithat is, blackout easily when in a siting pontionl and how is useful tiindicate what you have accompiirhed whiie to avoid this when gemngyau up into your chair state that disabled - from training your own attendam to gemng a your normal blood pr-sure is low by ordinary stand=& college degree or a permanent jab. Do not assume that but OK for you. And state your mica1 blood pressure in havital rtaH members always see the penon behind the numberr too! disabiiiu 9. Be sure to indude with your checw* an explenatoy 3. Briefly outline your mutine bowel and bladder man^ sheet on autonomic dyrrefieda if you are a high spinal agement techniques Especially ask your docfor to umte cord injured person with th'crphenomenon. Do notarrvme that enemas murt be molded unlerr exprely ordered. that "an-rehab h~itaislaw know about thir probiem. For example. an enema is routinely administered ~orto Make sure you dircvrr thir with your doctor in advance w ~eveialkidney and X~raystudies - but your doctor may that healment to relieve this paroxysmal and dangerous wtte an order conhavening thir in favor of a bowel pro- rise in blood pressure is pmmpf and arxurofe. Such ex- mam iruo~oritowlinstead. planatoy rheek are available hom rehab facilities which see many cord injured people, and you may request a sheet for your "re. Alro, do not assume that since much time may have pdsince your spinal cord injury that available sides dl beused h rotatian. Th~sshould be a you cannot ever get automatic dyrrefiexia again. rvnften rchedule. and hung at your bedside if possible. 10. Note in your routine bladder care whether you tol~ 5. State Ule importance of regular and careful range of erate imgatim Ruld adminirtered rapidly or not, also motion during your hospital stay. Quads vnth minimal arm whether you have a tendency towards bladder spasmsand 56 REHIIBiLITAnON GALEm what there are and how to relieve them. Bladder warms 15. A quad with severe rospiratow complications may cendinly can bring on autonomic dyrretlexia and they can have a hacheotamy. without a mouthwand and letter mystify in an individual uith significant lass of sensation. board. (slhe cannot communicate at all. When one har a Also. if you have successluily hained your bladder. or d "hach." which is a remwray (usually! opening into you use an external collection deince such as a condom the windpipe for breathing ease, there ir no air crorsing catheter, emphaslle the loss to youif you are auiomatically the vocal cords to make them vibrate and thus produce placed on a Foley (in-dweilingl catheter lor "naH conwe- soundr. A non~disabiedperun can wnfe m-ger: not so nience." Ilf your attendant could "anen* you in the hos- someone with weak upper extremitier. Such irolation can pital. it wouldn't happen, wuid it?! be terrifying. 11. State whether you preler warm or even hat water to You can decide which of the above are useful and iele~ ddnk - most importaotiy, if you cannot tolerate dnnk~ "ant for you: you may wish to add others ar to modify in- ice water (Ice water and homjtals seem ioined at the these for "our 5oeciai nee*. But look them over and even aboue the lwei of your injuy. That means in your mor would be ready wlth my own list and wrth my dator's rhouldeis. probably suppoil and appmval. 13. Note that if vou become nauseated fmm "our un~nesr The keu ir to diwurr itwith vaur dactor eadv and have a or rome medication, otc., that you wiu not be able to tum concise iypewrinen checkhi long before you have any over to vomit or even raise yourself on an eibow. Inhaling need for it. One of our top iacai chest specialists, who has even a bit of stomach contents can be harmful to "our cared for manu revereiv disabled oeooie. . with onoumania. lungs. (Aspiration pneumonia is harderto cure than rep etc.. has already authorized the use of anendank in the lar [infechon causedl pneumania.! infenrive care unit There have been no pmbiems - in 14. Lirt bdefly any gecial equipment you use routinely fact, the raponre ham itaH has been very positive. such ar Swnco boats, egg crate bed lrame. waterbed. Maker sense. doesn't ir? sheepskin, etc. Many of these items are covered by imw- ante especially ilthoy are rented for your horpitai day. You Reprinted with pemrission from The Independent. Vai 9. may want to bling the more parbble items with you. No. 1. 1981. Potpoum by Gini Laurie Accessibility AdoptableHouring By Jar*CaUin Acce~ribif ...... = . . ranlkwxiahon, W, 311 Rrrf St, N ThePlonneriGuideloBamerF~ gram. P 0. Box 1358. HotSmina, Warhington. D C. 20001. Meetings. By Bamer FreeEn*mnmmb Arbmar 7BOl. P10nninqBonierFmeLibm"er.62 plger and Howard Ruveli k.oria,.r A practi Free ham NationalLlbmy S-re IorUle caland comprehenrivegulde 73 pas-. Addlcdon BiindandPhy$icallyHandicapped.The 511.95 from Bamsr Free Enuronmens. Libraw of congrerr. Washington. D.C. inc. P 0. Box30634 Raleigh. Norih 20542~ Carolma 27612. Tha Kumveil Reading Machinr. the "magic sliungmaihinr." which reads printed ma+etenalalaud. bnowa~iliibleat some local bbratier. Artlstr NationaIOddShae Exchange. Ruth A RerourreLiriingojDlsabidAniSLS, Book. Rubin Feldman. 3100Neikon Way-220. SantaMonica. Calllorria 90405, now Nationwide listing by *ti3 and by Redwed too late for Joyce Knilkn, tha expemre. ~reeirom~aur..ns~mm~~. Ge'sbaakrevlwer hincludeinlhlr chargerP5 initial mamb.oh,pfe.fo.lo National Cornmitoe. Amior he hand^ iswe ie~icrsfopeoplewh- leetaremir- kapmd. 1325 ConneihiutAvmue. matched duetodiseare, injw or N.W. Suite 418. Waihinmon. DC Frnnkih D. Rooseueil Ttiumph OOO amputation. 20009. Disobillly. By RlchardThayer Goldbeig. Aromm~moiationofFDR'I blhdayon ClorherbrDrmb!ed~eople.~y~aure~n Januam30. 1882224pger. $16.95 Goldswa*hthy lnrrmctionrloradaphngor Amtudr. rnaiung rlolherforan induidudbbliN How WeliDoYau UndershndDirabiW? horn ABT Book. 55 Wheelsr5nnn~ Camhtidge. Marachuem02138 $11.95 homBatslard. North Pamhe~ 1 .,;...... ,,y.:,,. : ,r,. ,.. Vermont05033 Fromthemm~wurce. ..>-:o .Sj>,< <,.>.o r\K) >' SfmngmVleBmkenPiar~.Byh KnlUlng&Crachetby Sholqih HollLng- <.:I I.. . ,; < . -. :n..r .. \ ,. Cleland ChosenBmkPublshingCa.. wonh ioi$17.50. .,; I : Lfd.. Lincoln. Vlrglnma 22078. Olnllbutsd by Word Book. Waco. Texas76703 Cookbook 156 pager. $6 95 The WheelchairGoumt. By MW E. S~inolCordlnjurierPsyrhofoglcol, Blakeslee, awheelchahd ierideniol SociaiondVocotionaiA@wtmwtnLBy Bnhrh Colvrnb#a.Covers melhodr adap~ RabPiiaB. Tfierchmann. 234pages. taaonr. selsction of appliances, and 1980 Veiyvaiuabletoau whouorkunth healthfuirecim. 219pager $8 95hm spinal card injured pemni. $25 lrom BraufonBook, 9 Errrt40UISueer New Pergamon hers. lnc. Maxwll House. York. NY 10016. Fa~MewPark Elmrford. NewYork cooklnslmma Wheefchob BYPhyu'u 10523 Tarnor former loodedlhr f0iTheCinun- naiiEnguiier 42 ieriperin beNpe. Cerebbnl Palsy $5.45 including mtago horn Aduacater CerebmIPalrv. Hop, Th,,gh Rwxh. lorthe Handicapped. 120s. khland. Redxd and enlalged by National Insti- Chicago. lllmuls606(i/ mts ior ~eumiancaiandcommuni~~bl~ Diserrrer. Free from UCPA. Public Rela- ~erbr~md~~d~~.ay~~ki* theGmnn'slibranan. Aalt~hee.lwlai tions Depamnent 66 Earf 346 Skeet Labour Ofice. l New York NY 10016. coll~ctionofgometreciperandagvido Geneva22 Sunberland. to mowingand using herbs. 45 pager $3 includingpmtage. Thepraredsga to the Gmltg so makecherkpyable to RehabiI!tatohon Guunteandiend to Miciop nosticand Veabentrnatenalr Quanerlv at 4502MaiylmdAwnue. st Lou& $35. UpdatePubiicabonr. P 0. Box Mlxroun 63108. 26377 Tempe. A*ona85282. Amfudes & Disab?fily:An An"oto0d DaiflHoatinglmpaired Bibiiogmphy 1975~1981.CampUedand gnantcouection Oipoew Charming dlus~ Captioning SharedPenpniuer Collec edited by ElaineMah 371 pager $15 trationr. Order from Edtotial Gqalbo. han olpapen presented at Nahonal from Regional Rehabilitation R-nh S.A.. A". Granjar82. Meruco16. D.F.. Captioning Conierencein 1978 $2050 Inrtiiute on AMLudinal. Lr-1 and Lefrure Mexico Grby'r addre li lar FIFIFIFI74, lram Na~onalTerhnicalInformation Ser- Badsr;. 18281 Sueet N.W.. Suit* 704. TlacopacSanAn-I. Mexlco20. DE "re. 5285 Poa~oyal ROD^. ~~n~$~id Wrrrhinmon. D.C. 2W36 Make checkto Mex,co. Viisinia22151. George Warhinmon U~ The Tufoi/Noteta*er ProvidiigA~. demls Supportto Mainseemed hf BlindPJisuall~Irnpaimd Cloth- Siudenti. $6 lrom Information Selvlc* Copms WjthS .-..* ,, :--.: , In a Jal?uaw8no~orm.Lord -.q.: Crawrhaw IT5-61.a keen home dl- "der ham England. ram. to lunch '., and showed movlero1harp~ial 'I lumpingradrile. in mmd August a gro"pafJay*mere disabledoer sons aruved. Th~ywereL0"""Q IheU S. und~rtherponronhip olTheMamrhi Newspaper;. the Idrgertnowipaper 8" Tokyo. At 4502. they had their first home^ coohedhenran dinnerand laiiedthrirflmlUS~madeSake. Also in AU~WLOffoBong, aphyri~ rai ihsrap., ham Gemany John Euanr iC5-61lmm England and Jane Knrhn~n1romDenmark Jonm,esc toiir group "rid hllsioin I,.',,,. <:,,.I ; I,, ,; ,,.d C,,,bur" iri,,>,d: Ibeloiv. LI 'Iornobnkt~ni~~ie~(llH ~~IoII~Ic~~~s~~~~~o~,,,~~,~,,~,,hirn Storkiof, ond Mriko Kttehorn. 8~1ie~recerur~ci Sacled Hcon oi~n,,,~ .. .- con.el/e~u"n,euund piillvsopil" "I I"~ ', I ~ rl. deprrldent ithng centem uiiom the U S.. . . anoiyzlng their poient,al/or odoptatian in Engiond ond Germ""* Boibara Pew Lowtutr <,rim?p,oo,,runer r.in;vnrno,r ,mlli i>llcn>vul, i orti il.:l.iiz~ilu, sk~llluioampiemc hamemori onti Sii!oo. 8hl. 1 nt,#~r'r~dqinr, Iuu,ci Rehabilitation Gazette Available Issues 4502 Maryland Avenue Back St. Louis, MO 63108, U.S.A onation per copy: $3 plus $1 domestic orforeirm pwtage Volume 5. HIGHmEDUCR71ONOFQUmSbytelcphone,ror- Volumsl9. VOCA~ONS~DAVOCATIONSFORQUAD5A rapandenruand anendanre. Readingwdi. Nrw appmacheslo guad'r acw 01 unde~landlngdeprerrion- helping wlth#el~ .l,md.nU. 'reaching h1i"d perioni ,oIy,,o. Employmrnte~nenceral quads. Hourinnand indepsndeniliuing. Tennlr Skiing. Sell-help Volume 6. QUR0S"NOMLlRFAMRIES.M~mageandadop~ oigank.hanr. Whrelchniiloader Slmuani. Hilchhlldns ,ion camping and "ar.tionr Wh~elihaircushionrAurnaiian thmugh Europein a wheelchair GPB lor high leve!quadr hbreglas lung. ROHO curhbn. Volume 8. TRhVELlNGQUAOSMedicalen*Pe.ng-arm Volume2O. 25EMPLOVmQUAORIF'LEGIC WOMEN Rehrbilita- ads, loot-operated a>&, mul6~conlrolr. %ad driving Foot- tian in the NavaioNation ind~wndentliinngp~~ms.Whccl~ conholl~drteengRamps Lib Adoption Haurlns chlirlikliarMni. improved balte,yrharger Inrx~~nn"~ vlmperp~~kvpunlhhit ~~~f~~~~~tingrl~~rn~hoist. YOUC~~~~ Volume 10. QUMSFITCOTLLGERNDATWORK Citizens band vamtional rahabilitation "she ~~mplegicsm mron ~r~r~r~rlin~ radio One~handfVpi"~Curbdimbingandchin~mnnallod whedchais Frm hbr%afMng.PorabL~ lungi. 50x. AInanm~ dan* Housing Volume 21.SPMAL CORD MJURY CENERS. TwntieUl anni~ venwisiua. Ad~lfJapansezkudld~nlmtl,eU.S. Don't beleH Volume 11.QUN)HOMEMAKERS.Tenthanni-my irrue wBhoi,tyaurR1Gm. Bamlerheeeduvltion Thedisabledln Homr~baicdb"#"e*rer Quad drnnng. Wheelchain Movfh~ Prots,ant rhurcher Inman rlq" iyicrm Vo.carti"ated ,el*- werated phone. Mus~cthsrop!, Remote ronhols Meucsn how phone. Laiaim hauringand SeMcer New ponnMe iron 1""s ,"sand attendant3 Plsrlngcmricoun* Surp~nrionnmriorquadi. Tm"eling q"8ds ch,~'rwr~"~n""gpol~ophp51 Volume 15. QUAOARIISTSANDPUVIISTS Amateurradio lor quads Woodrow Wilson Rehabdilationcenter Woridund.RU~ VolumaVolume22. HIGHNmmONOLETFORSCI. Dim 910usmou~.Hourinsand homerennru. AquadinTaiwan. A key to beepi health Prydoloscnl benrI#fJf~fMSdi~1~1.Inds- Talking eyes Partableramps Recihingand Va-1 wheelchairs. p""dent living promarm, Llfstyls. Alf.ndantrat hornpand at Wheelchairpiloll cousgs. Ruildingaquad'r aun home Mrns oral h~a""g-im- paired adulir Com~ul~rpm~mmin~hainingTmvel by Volume 16. SOCIALSECURTr(RNDMED1CARE Spx Vans Lib in 68 counmcs. AquadonMachuPirchu Lesbagcoo~dlor and hand ronnoli Amuohonhicintoral rrlermii Familureactions quads. Foot r0nhold""ng. Push bumn dnvlns O-er Mnlng. Elevanngwheelchalrlmplementabon niSection504. Volume 25. POST~WUORGNG PROBLEMS and rspimtow rehabil~trtian.Disabled Peaplei' Infernational. Adoption, Inde- pendent 6vin9. Llfestw owing and home rwrcer. ~eligian Volume 17. H0BBIESFORQUN)S 7RAM.LhMexica. Canada and iehabilitation. The Gorene edllon' 198" zbdldy tour 01 inde~ and E"*o,,*. TiavelurlhRspimtorr. R*rreabonal u.hMe*for wheelchaired Rehabilllabon Act oil973 Bilboinghll. CoalT- tianr Edoca~onand~mploym~nfolq~arir.Volunrenproiecti. AdlurVnrnistorpinalcordiniuy. Bioleedback German breath- inghramenl Chnrcaf~Ma~e~ro~oorhwndddmd.Vaniandl#lb Remote ~~~h~li. Volume 18.l0lEMnOYEDQUADS 5upplementllS~curlIy Noh "Quad" 1% nor =ad m ths rpilBc nid cord iqvv meanmns d Income. MultipleSrierosi. CommunlwcoU~gesDaiaproresng. q"adnpl.gl. or *uap,cg,a irn inwry n UIP neck b".,,. bd in ,he =nerd Specid telephone reliicces m5 mwulabons on anendanli. quad^ mran,ngo, a r#uarrly duabl.,, llenonwiln hn,Maor no-. o,amior adilpted ramsla Step~uana,liband ramp. Newwrd hoard legs b.rau.. oiln,vryord~.~srnuhMash "ti.. amPuta"on,r.r~bm, Inexpensive hs~down.Bargain vheelchalr narowpr ACCD. P'IIY muldpl. ri.rosis, rpillal CO"., ,"i"" WLo, muvviar dylmilhy ar sny other n~uinlvinraldi~as.