Gerald Gold, York University [2]

            An underreported group of disabled persons in Northern industrial societies is isolated within an ‘invisible envelope’ of private long-term disability [1] . This umbrella of disability insurance embraces a wide range of disabilities and chronic illnesses, many of which include multiple disabilities.  Significantly, these work-related disability insurance plans displace responsibility for the support of disabled persons from family care to privately-sponsored forms of income or other support. This paper strongly suggests that long-term disability plans, which include much of the salaried workforce, alter definitions of personhood (Ingstad and Whyte 1996:9) in "Northern" societies by transferring responsibility for disability policy  to the private sector, with the effect of hiding the management of disabled people from public scrutiny. A consequence of the ships is a category of invisible disability, which includes persons who no longer fit within conventional categories of work and of non-work.  The 'double marginality' of the invisible disabled, places them in a "deviant" status (Goffman 1973), within which they become isolated from everyday social discourse and social action.

            A comparison of eight developed nations shows despite transnational similarities in the organization of long-term disability policies, there are also numerous differences which are most apparent in alternative forms of organization, determination, and management of disability (Zeitzer and Beedon 1987).  Although, there are few comparative studies of LTD plans in developed nations, a similarity of most plans, which emerges from this Canadian and partially American study [3] , is the barrier placed between persons supported by private long-term disability plans, and almost every aspect of their former work environments (Colopolous 1999).  Information on persons supported by LTD, is secretive, difficult to access, and has been consistently outside almost every study of disability and work. 

            An interpretative study of long-term disability from the perspective of the adaptive strategies of disabled persons, requires access to privately controlled lists of respondents. This restriction favors qualitative ethnographic study of the everyday lives of persons on long-term disability (or, 'LTD,' in this context,) using unobtrusive participant observation, within disability discussion communities on the Internet. Although in these anonymous contexts, long-term disability is rarely a primary topic for conversations, there is sufficient conversational data and from a wealth of private communications with this researcher, to provide valuable insights into the meaning of LTD.

            The objectives of this discussion are first, to show how privately sponsored LTD isolates and removes persons from everyday environments and personal networks of what they have long defined as 'normality.' Partially as a consequence of long-term disability, the disabled person becomes an‘other’ whose ‘catastrophe’ is disassociated from those in everyday work settings and from the life course of most workers. A second objective is to focus on persons working with a potential of a major change in their relationship to their work environment, and for whom long-term disability can become a threat to what they had assumed to be a secure and ordered lifestyle. They may interpret the possibility of becoming dependent on disability insurance, as an outcome which could be inevitably forced on them. Some, facing the prospect of LTD, try to communicate recurrent messages of normality to their employer and to fellow workers, resisting attempts to place them within a category of exceptionality.  In striking contrast, others display no such resistance and emphatically regard their LTD acceptance, as a welcome transformation, a new liminality which, despite numerous procedural complications, begins a new phase of their lives and finally permits them to be disabled. 

             Movement from long-term employment, is critical in societies where life-course ideologies and notions of personal worth are structured around work careers. [4] However, social consequences of long-term disability plans can be difficult to document without studying LTD in non-work settings. Nonetheless, details of LTD plans are available on the Web, from employers and insurance companies, in hundreds of the web sites [5] . Yet, there are few analyses of their social, economic implications; most LTD plans offer medical benefits and pension continuity, although monthly LTD checks are substantially lower than earnings and most plans do not include a cost-of-living increase.

            Receiving an LTD check is not similar to being on pension. Some feel that those ' on' LTD deserve less than those who work, or who receive an earned pension. [6] In contrast, and in comparison with the absence of Canadian research on government-sponsored disability insurance plans, in the United States, some have given government long-term disability plans (especially Social Security) thoughtful policy analysis (Scotch 1994.)  As I show in this study, consumer perception of LTD plans is similar in both Canada and in the United States.

            An exception is to the absence of interest in LTD plans is research and on aging and life course analysis (e.g. Campbell 1996;) the importance of LTD to persons with post-polio syndrome  (Locker and Kaufert 1988) and with chronic fatigue syndrome (Bloom 1996.) Completely unstudied, is the often strategic relationship between the onset of retirement pensions and the decision to apply for long-term disability.  Although forms of long-term support are not officially related to each other, their recipients consciously balance the advantages and disadvantages of each in context of disabilities.

            Partially for motives which insurers and employers (although not employees or consumers,) insist are based legitimately on the (employers' ?) need for privacy, insurance company (and employer) controlled long-term disability plans rarely receive the everyday scrutiny of workers.  Social scientists and other researchers who wish to study the application of  disability plans may also be unwelcome, partially for the same reasons. This reluctance has its origins in the marginal, isolated and deviant status of persons with disability and persons on long-term disability, are regarded as an irrelevant non group in most policy analysis. Furthermore, with few exceptions, those who come under LTD 'jurisdiction,' are not subject to public regulation, which is accepted and legalized in disability pensions. For most North American plans, there are no shared contexts of people on long term disability, whose identities are submerged by insurers, former employers, labor organizations and even by the insured themselves, who are given no opportunity or incentive to communicate with each other. In Canada, those who receive their income under a long-term disability plan are normally expected to surrender to their private insurance company, what they would receive as their Canada Pension LTD insurance, which then becomes the sole interlocateur of their clients' life with disability. [7]   Depending on the insurance plan, and the interpretation of this plan by the insurer, the disabled lose their right to earn supplementary income, to take courses, do volunteer work or any other activity which could jeopardize their disability status as defined by their insurer.

            Moreover, within an organization, persons who take long term disability, disappear professionally and lose their work identities.  Speaking reflexively, as both an ethnographic methodologist and as a person with disability, limited as a quadriplegic by mobility restrictions (Gold 2001), I have lived with this uncertainty for twelve years.  From my perspective, before the advent of Internet communication, there has been no uncomplicated means to contact those who have taken permanent LTD status. [8] Both employer and insurer may regard these contacts as unwarranted intrusions of privacy. In their relationships with employees, employers seem to regard disability as a distant and ambiguous ‘catastrophe’ which does not affect ‘normal’ people, except those whom "time has forgot (Hevey 1994.)"

            The regulations and procedures which precede the disbursement  of long-term disability are dissimilar to the routine actions that initiate mandatory retirement and the payment of pensions except LTD is any regular procedure in the life course. The negotiations and authorization of the payment of LTD, conducted privately between disability claimants, and those employees who are designated by an institution's administrators to manage long-term disability plans, may be shrouded by secrecy and uncertainty.  Almost every LTD plan is characterized by a mandatory waiting period, before employees make their formal departure from the familiar organization where they have worked for many years.  But where retirement may be a celebrated occasion, LTD departure is clandestine. Furthermore, in most wage negotiations, where contracts include provisions for long term disability, LTD is accorded a lower priority compared to  politicized issues such as wages and pay equity [9] LTD is often totally ignored in contract bargaining, where it frequently takes a low priority among those who are gainfully employed. In summary, professionals and other workers often regard disability as a contract frill, an unlikely eventuality, which is always left somewhat ambiguous and less 'normal' than illness or injury or retirement.

            Recent anthropological fieldwork with virtual disability communities provides me, unexpectedly, with a context for this discussion of LTD (Gold 1999b.) I followed these particular discussions as both a contractual participant who may be obligated to apply for long-term disability, and as an ethnographer. In particular, this became a discussion topic in my daily visits to MSC, a Canadian virtual community disability for multiple sclerosis, where employment is frequently interpreted in a larger context.  

            Although I had already completed an ethnography with MSC and one other largely American virtual disability community (Gold 1999a, 1999b,) long-term disability had never been a focus of study.  Within MSC, “threads” of conversation rarely focus on LTD, but are directed instead toward other closely related topics.  The two most related 'threads' of conversation are "Telling the boss" and "Career moves." An examination of some of these narratives, perhaps because of their focus on work, initially provided me with a consumer perspective on long term disability. In later months, further observation and conversations, he used searches of Usenet archives with the Déja Vu search engine for Usenet postings.  I followed these searches with correspondence with the authors of those communications. These letters provide numerous examples of discussions of long-term disability and disability careers, coming from several virtual disability communities.  For example, one response from a person I will refer to as Brian, is one of many conversations, which cover multiple disabilities, and which place disability careers in the context of events which led to LTD.

            Brian provides a graphic account of the sudden changes in his life which led him to apply for long-term disability.  Like many people who responded to my queries, Brian confirms the methodological advantages of e-mail for receiving detailed and thoughtful responses from a disabled person.

 My energy is pretty limited to and some questions that might be best on e-mail, where I can take my time, collect my thoughts, check-re-check & then respond.

Career moves: LTD Discourse in Cyberspace

            In all disability communities "getting on" long-term disability is viewed as a herculean task with numerous procedural obstacles.  As Alfred, a participant in a MS virtual community observes in his response, which provides some explanation of LTD plans in Canada:

I knew I had to make 30 years to get a good retirement. I struggled for the next 5 years. While my start was rough, (break) I was elated by the district's idea of a 5 year 'buyout' in my last year. I went out with a flury of glory and a much bigger retirement than I had expected.  [Providing me with advice in a direct voice:] It is probably worth your while to struggle through. Lots of luck.

            Within virtual disability communities, discussions of long term disability, although infrequent, are animated and opinionated. Notably, these conversations often include "significant others" speaking for or as persons with disability (e.g. Avery 1998.) Yet, these discussions rarely focus on the terms of long term disability.  Often, persons with a wide range of disabilities seek advice from others on the most effective way believe it that to apply for LTD.  A representative example of this advice-seeking process is a message received by a Usenet group focused on autism, where a participant, uncertain about how to present an LTD authorization request to her physician and receives the following advice:

 Get the form, get the doctor to fill it in and send it off. The least you will get will be a health care card that will entitle you to reduced prescriptions. Most doctors faced with one of those applications will just tick a box, rather than fill in the long- winded questionnaire....  [This] automatically entitles you to a disability pension.

 Sam.

            This response is characteristic of most LTD-related threads in virtual disability communities where discussion often focuses on whether an action is 'safe' or is strategically correct.  That is, if a disabled person wishes to continue in their work environment, if they are currently working, and are looking for official confirmation from their employer or physician, of their diagnosis of disability.  However, while they are still working, most people rely on evasive strategies to avoid detection or unmasking in their presentation of self (Goffman 1963.)

            Employee anxiety often begins before disability is visible or while it is in a time of relapse. Spousal support is a particularly important consideration in the decision to begin LTD status. However, virtual community members may be just as likely to also look for advice from others in their virtual conversational environment, before making their 'career move' from full time and then to long-term disability. For example, a participant in the chronic pain support group receives strong advice from a lawyer, in response to a message with the subject line of "barely hanging on. " He thought she should initially request part-time long-term disability, before abandoning her relatively demanding work, to begin full-time LTD. [10]

            That response is consistent to the messages I received when I inquired, using Déja Vu, about my own alternatives. One response summarizes those of several others who emphasize the need to 'hold on' to normalcy as long as possible:

 

Gerry;

  No, the conditions for disability in USA are similar [to those in Canada.]

I got diagnosed in 1980 and progressed to the point of needing a cane in three months and needing crutches in the second year.

 I knew I had to make 30 years to get a good retirement. I struggled for the next 5 years .

 

While my start was rough, my MS did lay back in the last two years..

I was elated by the "district's" idea of a 5 year 'buyout' in my last year.

 I went out with a flury of glory and a much bigger retirement than I had expected. 

It is probably worth your while to struggle through.

Richard

 

 

 

            In many narratives, the workplace is portrayed as a threatening environment where coming out and revealing disability or chronic illness is interpreted as a fatal flaw, inevitably leading to a loss of personal empowerment and eventually, the loss of employment. These messages underscore the ambiguous and imperiling status which both employers and employees attach to disability.  However, the negative narratives which provide graphic images of crisis, are balanced by tales from those who emphasize the relief when they stopped working, emphasizing that they are now able to abandon a contrived pretense of ability. Their exuberance and expression of release does not lessen the severity of some of their tales of the serious economic shortcomings of long-term disability. In practice, many of the active participants in MSC have already made the decision to leave the workforce and are already supported by long-term disability insurance.  Others see themselves shortly turning in that direction.  (Gold 1999b.)

            Frequently, some look to their virtual communities seeking advice.

 As most of you know I don't have any physical disability but it worries me constantly that things will not always be this way. 

            My wife would be in full support of this career move [to LTD] should I decide to take it.  She also works full time.  Given what you folks know about this disease and your own experiences, what is your advice?

This message concludes with a plea of desperation with and an admission of an incapability to cope with a worsening body. A self-imposed change in life course is considered as an action which softens the threat of termination.

 

I enjoy my work, but lately it seems that I may not have the energy to continue this forever. 

I don't see ANY examples of mechanical engineers "taking it easy."

I fear that any admission of illness will result in almost immediate layoff.

[In terms of beginning LTD] I am already leaning toward a "JUST DO IT!" Stance.

                                                                 

            In a reversal of emphasis, two similar messages remind MSC community members that a few corporations often creatively include the disabled.

       Don't know if this helps -- hope it does! Best wishes with your decision.

We had several people with MS at the bank, for whom programming or systems design worked in well with their jobs. I recall one fellow with relapsing-remitting MS, who was away from work a day or two every second week. It seems he could still carry on just as well at home where he could give in to the horrible fatigue, numbness and pain when it swept over him.

 

            Nevertheless, the policies of some Canadian companies frequently are usually incompatible with disability in the workplace. Despite Canadian human rights legislation, there is no effective national legislation, similar to the Americans for Disability Act, which specifically covers multiple contexts of disability. From the perspective of people with MS, some Canadian workplaces, especially smaller companies, consider long term disability as the cause of increased insurance expenses and inevitable termination.  This is summarized in the experiences of one Canadian industrial employee, reporting his experiences of working with a hidden and potentially costly disability:

            The Operations Manager got wind of my MS and had a 'talk' with me. He didn't come out and say that he knew that I was being tested, but he did mention that he didn't  want to see me on long term disability.

 I assured him that I was fine and I had no plans of going on long-term disability.  (Our insurance company has a very strict rule about LTD. The possibility made you unable to do any job on the mill site.) 

Anyway, a couple a days later, I was called into my supervisor's office and handed a letter informing me that until I could prove that I DID NOT have MS, I was terminated from the company.

             Well of course my 'dx' (diagnosis) came back showing that I had MS, and therefore I was terminated.  My personal opinion is to keep your mouth shut because they can fire you for anything MS - related so they won't be hauled into court for being discriminatory (and save a bundle on insurance costs.)

            Others repeatedly discuss difficulties negotiating with insurance companies or coping with the range of exclusion under LTD rules. This becomes particularly important for invisible hand multiple disabilities, and often for 'invisible' illnesses, and those which include symptoms of chronic pain, including arthritis, asthma and fibromyalgia. In a larger context, long-term disability insurance policies become primary considerations of the everyday difficulties of living and working with disability. In both American and Canadian contexts, the only alternative to wrongful dismissal is legal action, and this can be almost impossible.

I did check into suing them for wrongful dismissal. However, my husband was working as a subcontractor for the company and we were told that if we pursued the matter, my husband's work would dry up.  I know that this is also illegal, but it is also very difficult to prove.

 

Accepting LTD

 

            To a vocal cyberspace minority, Marilyn, approval of long-term disability, whatever its economic costs, signifies a meaningful personal liberation from the strains of disability. Abandoning the difficulties of pretense, they feel that this is a moment compelling than to abandon their careers, accept a diminished income of long-term disability, and focus on living with their disability.  Some have already made plans to substitute for an inevitable loss of income; they also may choose to accept their new limitations and accept what seems to be an optimal outcome.  As one white-collar employee concludes:

Going on LTD is a tough decision. But for me it was the best decision I could have made. True, there is a loss in income, but with the way the financial maneuverability [of long-term disability] works, which I still do not fully understand (i.e.. taxes,) I will have more than enough money to live on: support myself and daughter, go to school, continue many hobbies, etc.

             I am coming up to 10 years on long-term disability next year, and I turned 40 this year. Life is not at all difficult! I like being retired, despite my reduced physical capabilities.  (In response to my request for advice about considering long-term disability.)  I'd say go for it.

 

            Undoubtedly the most positive statement about LTD comes to from a Canadian who adjusted to the changing attitude of his employers as they adjusted to his disability, which may be the most frequent consumer reaction. His optimism emerges in his reply:

  I have been thinking about asking my employer to begin procedures to place me on long-term disability. [11]   for that reason, I am intensely interested in finding out more about how making the transition to LTD affects our relationships with co-workers and other people, and our continuing ability to pursue other interests.

 

            You [may] find it limiting in a way.  For example, people I know have been disturbed because of the degree of control that their insurance company now exercises over me and my loss of contact with people who used to work with me to. My insurance claim and medical pension claim state that I am no longer capable of working at any job and therefore, if I wanted to start work, I would have to contact the insurers to arrange for a "rehabilitation plan" In my case, I know I will never go back.

            Of course, I miss the company of my co-workers, but it is a minor thing.  It would be no different than a normal retirement.  I think it depends on whether a person feels that they are being dragged out of the work environment or whether this is a great opportunity to put the old to bed and move to start on a different journey.  [He explains that he always enjoyed insert after work to enjoy life working but knew he had to stop.]

 

Ten years as a Conservation Officer all over British Columbia, then on to the Canadian Federal Government as a Custom Superintendent, mostly at Alaska/BC and Yukon border posts. 

While I am sure I could have stayed another year or two, I choose when to leave.  My cognitive and memory problems allowed me to get by, but were not predictable.  I couldn't hold a pen anymore.  I left because I believed that the point had come where my employer would be better off hiring someone else with my salary.  After 26 years of being a workaholic, I don't need to work to enjoy life.  Since I left, a friend at the office died unexpectedly with 34 years service, and 54 years old.  It sure confirms for me that I choose a good time to leave.

            A parting thought - about 2 years ago I went from using forearm crutches to using a power wheelchair.  When it was ready it was delivered to the office.  I was curious what reaction it would get from the 40 or so co-workers in my unit.  They turned out to be a mirror of my reaction. Because everyone saw I loved it and could get around better without wearing myself out, they seemed to be comfortable in my presence. Going on disability was similar in that everyone knew I was looking forward to it, but only when I felt justified in leaving.

 

 

Long term disability reconsidered

 

            The examples in this discussion primarily discuss long term disability in Canadian and in some American contexts, although there are significant differences between disability legislation in these "northern" nations. For example, Canadian and British Columbia provincial human rights legislation may not be the equivalent of the more comprehensive Americans for Disability Act (ADA.)  Nevertheless, in both Canada and the United States, there is almost no social science literature discussing non-governmental LTD plans and only some commentary on governmental plans as a social and economic alternative for persons with disability. 

                        These examples_the value of using Usenet or Internet information to study the relationship of disability and work, especially if this is carefully confirmed in correspondence, and may not be available in any other form.                        Some Usenet posts however, may appear to be 'authentic,' and are passed from one Usenet group to another, greatly conflating the original message (Aycock and Buchignani 1998.) Also, these messages lose their patina of originality especially if they are receive by a prefix of "please post."    A certain number of other cues lead to the suggestion that information in the message is itself suspect (Donath 1999: 34 -39.)  These messages are not situated within the context of discussions of long-term disability, and may be randomly distributed ('cross posted') within disability focused groups on Usenet.  Moreover, although my own intensive search of Usenet messages does not include many extended discussions of long-term disability. These are always part of a longer message 'thread,' in which the original message invokes multiple, often unrelated responses.  Also, most messages are specific to one disability. The few exceptions focus on invisible or often on 'medically questionable' and controversial [12] work-related disabilities such as fibromyalgia and chronic fatigue syndrome (Bloom 1996, Campbell 1996.)

            The messages which I received are in response to a specific query, and do not reflect discussion threads similar to those introduced earlier in in this paper. There are a few related studies of long-term disability which deal with post-polio syndrome (Locker and Kaufert 1988, Sheer and Luborsky 1991, Zola 1991) and multiple sclerosis focused groups (Gold 1999a, Gold 1999b, Gold 2000.) However, in most Canadian studies, (Gold, Kaufert) discussion of disability and work must always be in the context of Canadian national health legislation as it is interpreted in specific provinces.

            One of the difficult moments in cyberspace discussions of LTD is when a seemingly valid application for long-term disability is denied, often because of the unrecognized or invisible character of a disability.  In this Canadian example, from a virtual group for fibromyalgia, rejection initiated personal crisis:

What exactly *is* DISABILITY insurance for? ...  Eventually, I had to file for bankruptcy this past March, so I can really identify with what you're going through. Hang in there...it will get better, one way or another.

Siren of the Sea.  Faith is the bird that feels the light, and sings when the dawn is still dark.

  These words characterize other messages from persons who do not qualify for long-term disability because they cannot be diagnosed (dx' ed) as  'disabled enough'  in there were, to be eligible for insurance coverage.   In Canada, these cases would be  primarily covered by  human rights legislation which often are a second  important barrier between private insurance plans and disabled people.   A third barrier is that disability legislation is primarily provincial and the dilemma of Lucie could have a different ending elsewhere  than  in Nova Scotia.                                 

            Disability is not a compelling topic, but rather is a remote reality to wage earners in "Northern" nations such as Canada and the United States, where disability can be equated with isolation from the work world and from normalcy.  Moreover, at least in Canada, disability is rarely a significant consideration in the negotiation of labor contracts ("it could never happen to me! ") Another common explanation encountered in informal  'on the job'  conversations, is that disabled people do not work, or, or do not earn their pensions.  That is, they must have  fewer  requirements,  in that they may live for shorter periods of time (confirmed by life insurance companies who will not insure persons with disability.) Incorporated in the Web sites with the packaged offerings of major insurers, are levels of protection designed to be read by the non-disabled, making these LTD policies part of what of what Albrecht refers to as "The disability business. (Albrecht 1996).  In this sense, disability on the Web, is often presented as something to be protected from, and  even disability-focused discussion groups may present themselves fortuitous gatherings of rejected  or damaged persons (cf.  Phillips 1968.)

             A survey of disability literature in both Canada and in the  United States,  includes  no social or cultural studies of privately managed long-term disability plans, despite their  demonstrated importance.  This emphasis is consistent with North American ideologies of illness and the body, within which disability is often blamed on the disabled and falls outside of the conventional interpretations of illness (Frank 1996, Murphy 1990.) Despite the recent array of disability legislation, disability status remains ambiguously linked with unemployment insurance or with Social Security and with narratives on welfare and dependency.  This relates to private long-term disability plans and their relationship to attitudes toward disability, and invites further comparison between long-term disability and other forms of transfer payments which have their origin in earned income  (like unemployment insurance.) 

            In this respect, long-term disability schemes are bound to create new and unstudied dependencies,  together with an atmosphere of insecurity or threat.  There  are significant opportunities for further research of the relationship between disability and work, similar to what Handleman and Leyton (1969) suggest in their early study of Canadian Workman's Compensation schemes (UIC.)  

            From a perspective of disability studies, long-term disability becomes part of the institutionalized Western stigmatization and isolation of disability. These so-called insurance policies often assume that disabled persons receive benefits which are somewhat similar to old age pensions.  That is, although long-term disability often specifies the  path to be taken in           returning to work, in  practice , there is no data suggesting that is what happens  to most persons on LTD.  Long-term disability, unlike the career implications of a pension, is a metaphorical closing of a phase in a career and that there is seldomly any further development of life careers after the commencement of  a disability plan.   Nonetheless, LTD may also be part of the  strategies of disabled  persons seeking closure to the work careers, and this is suggested by a few of the foregoing examples.   LTD is in most cases,  an imposed finality.  Imposed by  employers    convincing employees she or he can no longer work.

            For example, a property evaluator, physically unable to make on-location assessments, do these from his automobile, until his employer placed him on long-term disability.  In many of these instances disability status remains in liminal state, and long-term disability is successfully to postponed. This resistance is strongly reinforced by the failure of many LTD plans to maintain an adequate standard of income, or offer cost of living increases.  Yet, there are exceptions were some anxiously wait to be eligible for long-term disability, and a means to end their work careers.  Some have alternative long-term ambitions like the aspiring novelist who wished to be a productive writer, using her disability or "disabling time" (Corbin and Strauss 1987 to,) to begin a new phase of life activities.

 

 

Appendix and PostScript:  A Usenet dialogue with an occupational therapist. 

 

            Among these LTD narratives are biographical  voices which "mirror" my own  situation.   One example is Leslie, an occupational therapist (or 'OT') who opted for LTD because of the effects of MS.  His life history provides a distinctive perspective on LTD from someone whose life narrative is close to my own  and who, as I discovered in conversation, followed my own  frequent  commentaries, as a lurker in the  MSC  virtual community (Gold 2000.)  He provides a  provocative  perspective of the social and cultural implications of  LTD,  as  these  are expressed in virtual communities. Leslie begins with a brief history of his disability:    

 

In a nutshell, graduated in '85, diagnosed in '88, continued to work, travel, etc. Then secondary-progression kicked in, went on reduced hours in May '95 until Nov. '96, then stopped working and began long-term disability.

  Leslie 's strategy of reconstructing autobiographical memories focuses on this occupational  experience,  through a reflexivity which he expresses  through e-mail:

...  These thoughts are from my musings  while my  considerations  are fresher in my mind ...  My energy is pretty limited and I do best if I can respond on e-mail [13] where I can take my time, collect my thoughts, check-re-check and then respond.

            I'm just slowly adapting to being on LTD and hating it at the same time. Thankful that it's there, but am at a stalled point now...   Let me just preface my musings by saying

that as O.T.'s we believe in the importance of meaningful and purposeful activity and that our therapy should be client-centred. [14]

            I tried to think about how I, as the client, have found my interactions with the healthcare system.  One thing that stuck out for me is that one of the principles of client-centered care is to "acknowledge the extensive and complex knowledge that all clients have," [however] I've  found this most often to be lacking in my encounters with other OT's & health professionals...   

            One maddening example! When I went to a clinic and asked if I could see a copy of the (client) report, it was now explain to me that there would be 'technical words' and I should go to my GP for an interpretation. Well, I didn't have the energy at the time to pursue this, but that was after just finishing several years of sending copies of my report routinely to clients.

 This left me feeling was a total disregard for  [meas]  the client. "

            I have encountered one or two therapists who seem to acknowledge that perhaps I have some input. I really just want collaborate with someone. [At this point, Leslie slips into a consumer narrative] I've told them if they can help me to know what to look for, I will go ahead and do the that research on my own. I have, and recently have had some success writing my MPP about a medication I'm on. This was encouraged by the MS Society.

[Leslie adds that this is an issue which is not addressed by the 'medical model']  ...  For which... there just isn't the time or the luxury. After all, if you've waited 4-6 months on a waiting list, you somehow should feel grateful that you're finally in, and just 'make nice,' sit there, and listen to the experts, because after all, they know best [bitter editorial] ha ha.

            I think it is also only fair to say my actual diagnosis of MS seems also to be a complicating factor. Given stereotypes along with some hard facts that come with CAT scans and MRI.'s, I have noticed that the majority of the medical community seems to be concerned with the client leaving denial and being realistic. I find these encounters to be much more a downer than listening to people with MS on a listserv.

 

It was not until close to the end of my working career did the term MS become familiar to my

work colleagues, though on an as needed basis. Until the end of 1996, I was the provider not the

recipient of OT services. Then the tides changed. Due to declining health, "the jig" was finally up and I begrudgingly left my job. As the secret was finally out, there no longer was a need for me to use so much energy in trying to keep up the pretense that I had to be perceived 'on top of my game.' Therefore,  I dropped my identity as OT and was now patient. When the fact that I had MS was unknown to others I can recall many examples of apparent stereotypes held by other healthcare professionals, OT's included, who I was working along side. "You know -- the typical MS person-they either find God or go crazy" It is amazing to me how these and other examples remain fresh in my mind after all these years.

            Leslie's closing remarks refer to my participant observation:    

 

Hi Gerry. I've belonged to the MS list-serv ["MSC"]  for close to four years and have followed your contributions. In fact, I have a friend who is also a Professor just starting to go through the MS diagnosis maze and I've cited your scenario to try to reassure him that even if the diagnosis ends up being positive it doesn't mean he will automatically have to stop working.

 

References

 

Albrecht Gary (1992) The Rehabilitation Industry:Disability in America. Beverly Hills:Sage Publications.

Avery, Dona  (1998)"Electronic Parenting or, It Takes A (Listserv) Village to Raise Families with Disabilities."  Http://www.december.com/cmc/mag/1998/jan/avery.html  

Bloom, Annie (1996)  CFIDS Chronicle. "Delays Denials and Deceptions: the Truth About LTD Insurance."

Corbin, Julia and Anselm Strauss (1987) "Accompaniments of Chronic Illness: Changing Body, Self, Biography and Biographical Time."  In Julius A.  Roth and Peter Conrad eds.  Greenwich, CT: JAI Press.

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