Bridging Personal and Professional Perspectives: A

NARRATIVES

Bridging Personal and Professional Perspectives:A Continous Process

The author introduces her narrative:I hope that I am getting smarter personally and professionally as a result of adding to my academic

preparation in gerontology the experience of aging-related crises within my own family, role modeling bydisabled and older colleagues, and lessons learned from the progressive deterioration caused by my own lateonset disability. No longer can I expect to accomplish "business as usual" in quite the same way, but in thisnarrative I describe how I have become a more goal-directed person and professor as a result of these painfulexperiences.

had hoped my disability having MS. I was so relieved justcould remain invisible, to have a diagnosis—any diagno-

sis. I did not want anyone to feelsorry for me because I have acentral nervous system diseaseor to think "MS" before remem-bering my name and other char-

byJeanne E. Bader IJeanne E. Bader, Ph.D., DirectorG e r o n t o l o g y P r o g r a m ,California State University,Long Beach, Long Beach, CA

Indeed, I w a s a b l e toh i d e o b v i o u s symptoms fora decade. Now, at age 56, my dis-ability has advanced to the pointof forcing me to "disclose" mysituation by using a "handi-capped" parking placard,changing to a more accessibleoffice, and using a cane. Elevenyears ago, after driving with toofew stretch breaks from Oregonto Philadelphia, my joints wereaching from osteoarthritis. Thefollowing year, I was diagnosedas having Multiple Sclerosis(MS). Multiple Sclerosis is a dis-ease of the central nervous sys-

acteristics. Professionally, I didnot want anyone to expect lessof me or to assume that I couldnot manage the responsibilitiesof my job. Most of all, I didn'twant my mother to add myname to those on her "WorryList."

Now, I manage quitewell, thank you, except when Iget overheated. The only twocommonalities among persons

tem that results in compromised with MS are the high likelihoodmotor and, at times, cognitive of optic neuritis (sudden andfunction. While my arthritis ismerely annoying and painful—that is, a socially acceptable dis-ease—the MS is a "real disease"--that is, a stigmatized diseaseone that I quickly discovered

profound vision loss) and theinevitably debilitating effects ofheat. Everyone with MS needsto remain as cool as possible atall times. Each summer whenthe heat begins, people with MS

could become visibly apparent find out how much ground theyat any time. Then, a year ago, I have lost during the precedingwas grazed by a cab that tried winter. In my own case, my lev-to beat a yellow light in the in-tersection where I was walking.It is not the MS that now com-pels me to walk with a cane, butrather the mobility impairmentresulting from that injury.

For the first decade, Itold only a few people about

els of muscle fatigue increaseyear round, but become visibledeterminants of my movementpatterns and balance controlonly after it gets warm indoorsor outdoors. It's tough to keepup appearances during the sum-mer months. At times, I stagger

REFLECTIONS: FALL 1999 27

BRIDGING PERSONAL AND PROFESSIONAL PERSPECTIVES NARRATIVES

and pitch, occasionally even fall-ing, for no particular reason.Summers are scary for me andcause others concern.

Three processes havehelped me to bridge my person-al and professional perspectivesof aging and disability. First, Iwill relate the cumulative andinteracting effects of disabilityon my professional life; second,the contrast between teachingabout the caregiver role and myexperiences as a caregiver; andthird, my ongoing pursuit ofbetter data and role models.

Adjusting Professional Activi-ties To Accommodate Disabili-ty

As an academic programadministrator and professor, Iteach gerontology and spend alot of time with older persons. Ihave lectured for many yearsabout the interacting and cumu-lative effects of a wide range ofsensory changes and chronicconditions. Now that I am expe-riencing MS and arthritis firsthand, I have a clearer concept ofsensations resulting from visionimpairment, muscle fatigue,pain mixed with numbness, andimbalance. Although I am un-able to articulate adequately thesubjective sensations that resultfrom these conditions, my ef-forts to do so are more success-ful each year. Being increasing-ly able to describe what it feelslike to have muscle fatigue, inparticular, is a positive outcomeof coping with a negative per-sonal experience. Of course, Iwas trained to identify and toanalyze pertinent journal arti-cles and other academic resourc-

es, but now I also can speakfrom personal experience onthose rare occasions when it isappropriate to "disclose." WhileI find myself better able to con-ceptualize and describe the com-plex dynamics of fatigue, pain,numbness, imbalance, and oth-er consequences of variouschronic diseases, a relatedsymptom of MS is graduallyemerging: Difficulty finding theright word at a particular time.Teaching at night is increasing-ly difficult, especially when I amhot, tired, or stressed. Fortunate-ly for me, graduate studentshave welcomed the opportuni-ty to schedule courses on Satur-day mornings as well as week-

day evenings. One benefit of mychanging capabilities was that Ihad no choice but to give awayall my shoes with heels andthereafter limited myself to flat,rubber soled, wide box shoes.How wonderful it was to havean excuse to do just that! Tocomplement my heavy-lookingwalking shoes, I switched overto slacks with colorful shirts andjewelry n\ore often than dressesor skirted suits. As a result ofadapting my wardrobe to fit myneeds, I now assume that certain

avenues of professional ad-vancement are closed off forev-er because I no longer can wearhigh heels with my dresses andskirted suits. I make this as-sumption because from time totime I overhear criticisms of myrelatively informal and, at times,nontraditional attire. Anotherconsequence of having MS isthat I have had to adjust mybody image and mobility pat-terns to accommodate mychanging abilities, my need forremaining cool, and my growinglevels of pain and numbness,especially in my legs and feet.

Shortly after my diagno-sis, as a preventive strategy, Istarted working out faithfully,twice a week. In addition, Isigned up for a swimming classoffered by the local MS Society.Once there, I was able to observea wide array of body shapes andmovements that characterizepersons experiencing more ad-vanced stages of MS. Only re-cently have I had to begin driv-ing the short distances that Iwalked with relative ease a cou-ple years ago. Another result ofhaving MS is that during boutsof long-term vision loss in oneeye and extreme glare sensitivi-ty in the other, I have to limit myoutdoor movements to daylighthours. On one occasion, partici-pating in a professional confer-ence took on humorous aspects.During one of my four bouts todate of optic neuritis, I wasforced to try to identify col-leagues by their walks ratherthan by their other physical fea-tures or by the sound of theirvoices. Fortunately, I discov-ered that people's walks are asunique as their signatures. So I

28 REFLECTIONS: FALL 1999


walked around with an enig-matic smile on my face for theduration of the five-day confer-ence!

S tudying Caregiving vs.Providing Care

As an educator, I havebeen conversant for some timewith the research literature per-taining to various aspects of car-egiving, and in 1985 (Bader), apaper I wrote on the topic of re-spite care for caregivers waspublished. More memorable,however, are the lessons learnedfrom being a caregiver when myown family members were incrisis. My stepfather. Jack, wasparalyzed from the waist downfor the last several months of hislife. As my mother 's only

daughter, single, and a gerontol-ogist who was supposed toknow how to be helpful and topromote home safety, I rushedto the other side of the countryto "help" my mother. My goalswere to ensure that their homewas safely and efficiently man-aged; that his medications werethe correct ones, compatible and

well organized; and that bothJack and Mom were receiving asmuch medical attention and so-cial support as they needed.While I was in Philadelphia, mymother, who was Jack's prima-ry care giver, suffered a brokenhip when a chair leg came un-glued under her slight weight.She decided to have her hippinned so that she could returnto caring for Jack sooner than acomplete hip replacementwould have permitted. Then, tospeed her recovery process, sheexercised even more than usu-al. Unknown to us at the time,one of the surgical pins had be-come dislodged within a weekof her surgery. Weeks later, dur-ing the routine post-surgery vis-it, her surgeon blanched whenhe examined the x-ray that hadbeen taken at another hospitalwithin two weeks of mother'ssurgery. Her intensifying painand the x-ray clearly showedthat one of the pins had becomedislodged early on. Of course.Mom had to return to the hos-pital immediately for a full hipreplacement and another sever-al weeks of in-patient rehabili-tation, followed by prolongedrecovery at home. During mostof this process, I stayed on theeast coast. Everyone wasamazed when my boss at thetime suggested that I needed tobe with my family for as long asit took, so long as I met my pre-viously scheduled professionalresponsibilities. I did just that—and remain grateful for the priv-ilege and the lessons learned byspending time with my olderfamily members during a pro-longed period of crisis. Routine-ly, I would spend a fourth of the

day with Mom, voluntarily staffone of the otherwise expensive"home care" shifts for a third ofthe day, and run errands forMom and Jack when not fitfullysleeping. Neither Jack nor Momhad any energy to spare for anypurpose beyond coping with thephysical and emotional pain intheir own lives. For fourmonths, their life space wasbound by the walls of the adja-cent dining room and breakfastnook, which we had convertedinto hospital rooms for them.But they conversed with oneanother. The birds just outside,a resident chipmunk, and aneighbor's amazingly attentivecat gave them no end of plea-sure. In addition, condominiumowners in their community ar-ranged a rotating schedule offood preparation for Mom andJack. Casseroles, milk, and fruitjust appeared in the refrigerator,one after another. The commu-nity was remarkable in anotherway too. Usually twice a day, aneighbor would make a wel-come five—minute visit. Thoseshort visits cheered my wholefamily. Then Jack died. Mymother continues to grievedeeply for him and, at least atfirst, she was angry that her ownbody had betrayed her when shewanted to devote all of herstrength and caring to him.From the moment the chairbroke and she fell to the floor tothe moment he died, she re-mained unable to bend down tokiss him—a fact that causes hertears today.

After Jack's death, I re-turned to my job at the Univer-sity of Minnesota. In keepingwith my academic commitments

REFLECTIONS: FALL 1999 29


and interests, within three daysof returning to Minneapolis, Iaccepted an invitation to reviewa book of which I previously hadbeen unaware: Sankar's (1991)Dying at Home: A Family Guidefor Caregiving. I wished I hadknown about "Dying at Home"three months earlier! Then,within a year of Jack's death, Irelocated to a new job in LongBeach and a year later, my moth-er moved into a continuing careretirement community locatedwithin a mile of her previoushome. Gradually, she began toregain her physical stamina andemotional independence. For atleast three years, however, shecared too much about my opin-ions regarding every little thing.Her emotional dependence wasapparent to everyone and bur-densome to me. Then one day,with no prior warning, herspeech pattern while talkingwith me on the telephone 3500miles away clearly show^ed thatshe was re-energized, goal di-rected, and once again in chargeof decisions affecting her life.During the time that Jack was ill,I did not want my mother toworry about anything exceptJack's and her own well-beingand then, after his death, herown recovery. Therefore, I toldno one in mother's communitythat I had MS, lest the word getback to her. But I did feel com-pelled to tell a handful of friendsin various parts of the countrywhat was going on with me. Justopening that escape valve andletting out some of the pent-upthoughts about my diagnosisand about my caregiving expe-riences were therapeutic. Al-though I cannot imagine how

the responsibilities of being acaregiver could have been morephysically and emotionally de-manding during my mother'sand Jack's crises, it probablywould have been even rougherif I had not known that a fewfriends cared about me, too, in-dependent of my being a care-giver, and that they also knewabout my MS. Nevertheless,each time I told a friend aboutmy still-novel diagnosis and car-egiving experiences, I assertedmy right to determine when andhow to share that informationwith others, effectively denyingmy friends permission to do so.One of those whom I trustedwith "my story" unintentional-ly mentioned my diagnosis tomy mother in a telephone con-versation. When their conversa-tion ended. Mom immediatelycalled me and asked four ques-tions: "What was my official di-agnosis?" "What was the dis-ease like?" "Was she in any wayresponsible for my having 'it'"?"Was I receiving good medicalattention?" Since that telephoneconversation, without anyprompting from me, the onlyreference she has made to myMS is to confirm that I am awareof new medications as they be-come available. Not bad! Eachtime I ask myself anew why Iresisted telling her what wasgoing on with me, I come to thesame conclusion: As statedabove, I did not want my nameto appear on her "Worry List."

The Pursuit Of Data And RoleModels

The third process thathas helped me to bridge my per-

sonal and professional views ofaging and disability began be-fore I had any inkling that I, too,would develop a disablingchronic condition. This processmight be described as an ongo-ing one in which aging and dis-ability data and indirect experi-ences are the primary players.There are accepted "facts" and"demographics" about both top-ics; interested parties espouseconflicting value systems andinvestments; and there is not yetany effective integration of per-spectives. My discovery processbegan long before I was diag-nosed with MS. First, I read Re-habilitating America: Toward Inde-pendence for Disabled and ElderlyPeople (Bowe, 1980). That bookstrongly sparked my interest indisability. Then, my boss, men-tor and friend went from beingan avid runner to being quadri-plegic after a driver who hadbeen cited repeatedly for thesame offense ran a stop sign. Shemust have chosen at some levelof awareness to survive, or shewouldn't have lived. It took allmy mentor's intellect, energy,and finances to cope with recov-ery and re-entry into her roles asa senior professor, wife, moth-er, and soon thereafter, widow.Although it never was her styleto become an advocate or evento talk much about any person-al or emotionally laden topic, Iacted on the lessons she taughtme by example. I began to orga-nize conferences on disabilityand aging and started a state-wide interest group to coalesceprofessionals and consumers inthe fields of disability and agingstudies and practice. These ac-tivities provided me with ave-



nues for meeting people withpersonal and professional ex-pertise regarding disability;they afforded me opportunitiesto spend time discovering whatpertinent disability studies andpolicies existed. While I contin-ued to read about disability,more important was the fact thatI met active, visible advocates,academics studying disability-related issues, and many peopleof all ages with disabilities. Theadvocates aggressively chal-lenged my assumptions, my dis-ability-related lexicon, and mybeliefs and behaviors. Althoughmy MS remained fairly invisiblefor a decade following diagno-sis, I was told early on aftermoving to Long Beach that"coming out" was essential forme and for the good of the In-dependent Living Movement.By visiting diverse agencies andorganizations, I continued tolearn more about the Movementand about the nature and impli-cations of several chronic condi-tions. Then to my surprise, I dis-covered that only a minority ofpeople with disabilities wereaware of the availability of In-dependent Living Centers or ofthe basic tenets of the Indepen-dent Living Movement. Thesetenets include the right of dis-abled individuals to retain deci-sion-making power regardingall aspects of their lives, willing-ness to expend a great deal ofscarce energy to ensure enforce-ment of existing legal mandates,and demands for accessible en-vironments and "reasonable ac-commodation" in housing andemployment. It became my goalto continue to learn more aboutdisability and about aging with

a disability. But research dataand other information on thesesubjects were and remain scarce.Nonetheless, I "put myself outthere" by collaborating with twofaculty colleagues to write andlater to completely revise achapter for a second edition ofan edited volume on the contin-uum of long-term care. In bothversions, we summarized thehistories, assumptions, issues,and contexts of aging and dis-ability policies. It never oc-curred to any of us to mentionour own disabilities. Our per-sonal experiences did not quali-fy as "data" for that kind of pub-lication (Bader & Torres-Gil, inpreparation; Bader & De Jong,1996).

Again in accord with myrole as an academic, I capitalizedon information, programs androle models available in South-ern California to develop acourse, "Independent Living forDisabled and Elderly Persons,"a course title I inherited when Imoved to California State Uni-versity, Long Beach. Althoughthe course does require a fewreadings, it relies less on pub-lished materials than it does onexperiential learning opportuni-ties that include site visits, theexamination of a wide array ofassistive devices, intense discus-sions with guest lecturers, com-pleting safety checks of privatehomes and local businesses, re-designing forms for legibilityand readability, and other expe-riential exercises. As always, Ilearned as much or more fromteaching this course than did thestudents. In this instance, all ofus learned more about "thefacts" regarding aging and dis-

ability, about the interactions ofaging and disability, and aboutthe challenges and benefits of"independent living." Amongthe many issues explored in thecourse, one issue is of particu-lar interest to me: While manyyounger adults with disabilitiesdemand simultaneous recogni-tion of the social dimensions aswell as the medical aspects ofdisability, their legal rights andtheir personal potentials, theyseem unwilling to be identifiedwith aging, or as having any-thing in common with olderpeople. In fact, they do not wantto talk about aging. At the sametime, many older individualswith functional limitations donot want to be thought of as hav-ing a "real" disability or as con-doning the more assertive meth-ods of younger disabled indi-viduals and groups, eventhough their needs often areidentical. In this era of scarceresources, it seems to me thatthese two "communities" coulddo a much better job of workingtogether on resource and coali-tion building, when appropri-ate. (For further discussion ofsome pertinent theoretical andpolicy issues, I recommendKennedy & Minkler, 1999.) Iunderstand that there is muchmore to learn and do about per-sonal and societal aging than tosolve disability-related issues. Ialso understand that there ismuch more to learn and doabout the individual and soci-etal consequences of disabilitythan to solve aging-related is-sues. But needless competitionsbetween the two communities,insufficient data on both topics,and unnecessarily complex sup-

REFLECnONS: FALL 1999 31


port systems could be remediedto everyone's advantage. AsBowe (1980) advocated two de-cades ago, the results of collab-oration between the aging anddisability communities could bebeneficial for the aged in gener-

al and for people of all ages withand without disabilities. On theother hand, failure to collabo-rate would continue to be cost-ly to individuals, families, andtaxpayers. In my view, scholar-ship regarding human agingand disability studies needs togrow at an accelerated rate inorder to provide adequate datafor effective planning in antici-pation of the aging of the vastnumber of Americans born be-tween 1946 and 1964: the "babyboomers." Many from thisgroup will age with early- orlate-onset physical or mentalimpairments and with aging-re-lated chronic conditions such asarthritis and vision impairment.For others, delaying the onset orslowing the progression of dis-ease, disability, mental illness,and chronic conditions couldamount to huge family and fi-nancial cost savings. My profes-sional contribution is research,now in progress, to identifypractical suggestions, products,and policies that will accommo-date their needs, those with andwithout disabilities, who will

survive longer than their fore-bears dreamed possible.

I have taken the firststeps in squaring my personaland professional perspectiveson the issues . Even overcomingmy initial reluctance to writethis paper reflects emergingreadiness to accept the facts thatmy personal and professionalperspectives on aging and dis-ability are valid, hopefullyworthwhile, and interactive. Intruth, however, it was not untilI wrote this paper that I becameconscious of the interrelation-ships of the various personaland professional events that Ihave described. Also, throughthe writing of this narrative, Ihave strengthened my commit-ment to bridging personal andprofessional perspectives on ag-ing and disability. As a personwith MS and a professor of ger-ontology, I ponder how I canencourage my younger col-leagues, with and without dis-ability, to ask questions and,hopefully, help answer ques-tions essential to societal under-standing of aging, disability, andtheir confluence. At the sametime, I reflect on ways that I canencourage disabled people of allages to help those of us in theacademy to "get it right" andnot just smilingly share in-jokesand criticize our lack of under-standing.

References

Bader, J.E. (1985). Respite care:Temporary relief forcaregivers. Women andHealth, 10 (2/3), 39-52.

Bader, J.E. & De Jong, F J. (1996).Persuasions andpolicies affecting long-term care. In Connie J.Evashwick (Ed.) TheContinuum of Long-TermCare: An IntegratedSystems Approach.Albany, NY: Delmar, 389-400.

Bowe, F. (1980) RehabilitatingAmerica: Towardindependence for disabledand elderly people. NewYork, NY: Harper andRow.

Kennedy, J. & Minkler, M.(1999) Disabilitytheory and public policy:Implications for criticalgerontology. In MeredithMinkler and Carroll L.Estes (Eds.) CriticalGerontology:Perspectives fromPolitical and MoralEconomy. Amityville,NY: Baywood.

Sankar, A. (1991) Dying athome: A family guide forcaregiving. Baltimore,MD: Johns Hopkins.


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Bridging Personal and Professional Perspectives: A