Cohousing-L Mailing List: Paper on coho

['Judith Wisdom (wisdom]

> 
>             COPYRIGHT TO THE AUTHOR--ALL RIGHTS RESERVED
>                    DRAFT FOR PUBLICATION--DO NOT QUOTE
> >                           In Press
>       To Be Published in the Fall '95 issue of the CFIDS Chronicle (1)
> > ------------------------------------------------------------------
> >         SOLVING THE UNMET PROBLEMS OF DAILY LIVING AND HOUSING   
> >                 FOR PEOPLE WITH CHRONIC FATIGUE SYNDROME        
> >                       Some Preliminary Thoughts                   
> >                                By                    
> >                        Judith Fleet Wisdom, M.A. (2)
> > *****************************************************************
> >       Most of the literature on chronic fatigue syndrome (CFS) has
> > focused on etiology, treatment, and cure.  But in light of the
> > serious disability that many of us experience, more emphasis must
> > be placed on  developing remedies to sustain us while ill and
> > prevent further deterioration until more effective medical help
> > emerges.
> >      Individual coping strategies and local support groups are fine
> > as far as they go.  However, by their nature they can't address
> > some of the essential needs many of us have--especially those  who
> > are most disabled, impoverished, and/or living alone.
> >  
> > THE PROBLEM AND ITS CONSEQUENCES
> 
> > I believe there are three main components to our daily living
> > difficulties.  They are not mutually exclusive, sometimes interact,
> > and have health consequences: 
> 
>     > 1. Limited ability to perform certain tasks of everyday living: At
> > different stages of the illness there can be difficulty walking,
> > carrying packages, or exerting much muscular effort ("elbow
> > grease").  Food shopping and household tasks become difficult-to-
> > impossible.  Some of us lack the stamina to drive, further limiting
> > our ability to maintain our household and take care of personal
> > needs.  Lamps and vacuum cleaners break and require repair.  Some
> > essential items can't be purchased through catalogues or purchased
> > sight unseen.  Also, there's banking?  You can deposit checks
> > through the mail but you can't get cash that way.  
> >      Finding and paying for hired gophers for these small and
> > irregular jobs is often an insurmountable problem.  Asking friends
> > and relatives creates other difficulties.
> >    
>         2.  Isolation:  This has a multiplicity of causes and implications. 
> > Primarily it results either from having too little energy after
> > work or, for those who've become work disabled, from being removed
> > from a central source of social interaction.  
> >      Thus, for contact and recreation we turn to the same people we
> > rely on for the errands we can't do, overloading those
> > relationships.  And the truth is that friendship and "relativeship"
> > best survive under a reasonable equality of giving, taking, and
> > uplift rather than burden.  Our difficulties, limits, and
> > unpredictability (which our illness is infamous for) are  tedious,
> > restricting, and sometimes hard to believe.  
> >      You might become creative about new forms of giving, bend over
> > backwards to make compromises, try to remain knowledgeable and
> > interesting, are careful about what, when, and whom to ask for
> > help.  But even when you don't ask, your needs hover.  Reactions of
> > guilt and resentment are provoked.  A shift occurs. The
> > relationships are not what they were--the peer quality has eroded. 
> > Sometimes they even end.
> >       Making new friends is difficult.  When you're unemployed, you
> > lose cache.  What you "do" is an important social ticket. And even
> > if by reasons of personality, appearance, accomplishment, or wit
> > you might be able to attract people, many, when they hear "sick,"
> > take a few steps back.  Their eyes  glaze over and retract. Their
> > interest dissolves.  They fear you might turn into a burden.  
> >      It's true you make new friends among others with CFS, but you
> > need and treasure your old friends. They represent your well self,
> > and unless you decide to take a total nose-dive into illness,
> > they're vital to you.
> > 
>        3.  Insufficient funds for adequate housing and the hiring of help: 
> > If you could hire help, a burden would be lifted--you'd have
> > essential needs fulfilled without overloading your close
> > relationships.  
> >      But with the absence of a paycheck or a reduced one, the
> > general inadequacy of disability income, and the ultimate erosion
> > of savings, you can't afford this solution.
> > 
> > REMEDIES
> 
> > A.  Support Networks
> 
> > The AIDS people have found ways to allow PWAs to remain in their
> > own homes. Healthy volunteers help attend to some of their needs. 
> > This might be possible for us.
> >       But our situations are not comparable.  Unlike us, many AIDS
> > networks arose because of AIDS' association with the gay community. 
> > It was bound together by issues beyond the disease--sexual
> > orientation and socially oppressed status.  Even those who are HIV
> > positive can feel fine and have been essential to this support.  
> >      PWCs (3) have no basis for alliance beyond the illness, when
> > we're already too sick to help.  
> >      This difference contributes to the difficulty in forming
> > organized support networks.  They could help, but they still don't
> > solve certain problems that proximity of housing and communal
> > commitment do.  
> > 
> > B. Shared Housing
> 
> > This refers to living under one roof. Apparently there already are
> > some group houses specifically for PWCs.  We need to know how they
> > got started, their costs, their advantages and difficulties, who
> > does best living in them, and who doesn't.
> > 
> > C. Cohousing
> 
> > There is a form of community called "cohousing" ("coho").  Books
> > and journals exist on the topic.  There's an Internet list.  Though
> > no authority on coho, I feel it can offer us an important model for
> > our own communities or  already extant communities for us to join. 
> >      The central distinction between cohousing and shared housing
> > is that in coho each unit is complete unto itself. Thus, coho
> > offers PWCs what it does for the well--a way to counter isolation
> > and share (via proximity and communality) yet have privacy and
> > control over your quarters.  
> >      We need separation to maximize our ability to get absolute
> > rest.  We also need more than average control over our immediate
> > environment due to our many but varying hypersensitivities and
> > disabilities.  Separate housing units allows for this. Proximity
> > and community provide contact and ways to share in the purchase of
> > help.
> > 
> > OUR OWN COHO COMMUNITIES
> 
> > Were we to develop our own coho communities, we could tailor-make
> > them to suit our special needs and find ways to share in the hiring
> > of gophers and helpers.(4)   This would reduce the stress associated
> > with the oft fruitless search for help and would unburden our
> > relationships with friends and relatives.
> >      When bedridden or housebound, you can go mad from the
> > isolation.  With people close they could pop in for a laugh but not
> > drain you with the longer visits that occur when people come from
> > afar.  
> >      Many of us live in apartments, often to be on one floor. In
> > some, to get outside is more of a hike than we're up to.  A coho
> > unit could allow for close out-of-doors access, via a front porch
> > or deck.  When you can't walk far from your bed, being able to get
> > some fresh air, sit near a tree or some flowers rather than
> > lingering indoors can mean a great deal to the spirit and even
> > hasten you out of a slump.
> >      Perhaps we could more easily connect up with certain forms of
> > treatment--a therapeutic pool, a doctor who understands our
> > disease, massage therapists, and more. We might even be a model for
> > developing creative modes of living with this illness.        
> >    
> > ACHIEVING A BALANCE
> 
> > I'm of two minds about coho communities comprised solely of people
> > who are ill.     
> >      Might they reinforce us in our illness?  Would we get weary
> > from being surrounded by people whose central concern is the
> > illness?  For me this weariness sets in even from my daily  (albeit
> > very important) exposure to the Internet lists on chronic fatigue
> > syndrome.  Sometimes instead of feeling good from the warm support
> > and the cutting edge information, I feel too surrounded by illness. 
> > On the Internet, I can delete messages.  But in a community where
> > I'd live could I bear sequestering myself in my own abode to avoid
> > illness talk just at the time I want contact?     
> >      Or would the support free us to be more productive and
> > creative because we'd be less burdened by negotiating for care.  
> > 
> > THE PROBLEMS AND VIRTUES OF LIVING IN COHO COMMUNITIES FOR THE WELL
> 
> > Communities developed for the fully well would in many ways be the
> > best place for us to live.  They wouldn't ghettoize us and,
> > relatedly, stigmatize us.  They wouldn't contribute to the
> > reinforcement of our illness.  We'd be able to seek places in
> > geographic areas and with the kinds of people that suit our own
> > personalities and interests as human beings not as people who are
> > ill.  
> >      However, if such coho communities were to work for us, this
> > would require that these communities be truly willing to make a
> > commitment to help us in coping with some of our different needs--
> > for example, if we can't do our own shopping and were relocating to
> > a new geographic area, identifying stores that deliver a full range
> > of food and medicine; providing us with the names of carpenters who
> > could do some housing modification if such changes were necessary;
> > dropping by to say hello when we couldn't get far from our housing
> > units to socialize; assisting us in locating some helpers and
> > gophers from the larger community.
> >      I don't know if this could happen and allow us to avoid
> > feeling a burden or an obligation, which would be demoralizing and
> > defeat the uplift of community life.  When I think about this I
> > sometimes worry.  I surely couldn't now stand long enough or exert
> > the energy to cook a group meal.  Would they need something I could
> > do, as my community offering?  They would have to understand the
> > illness and respect our need to set limits, not seeing these as
> > signs of moral dependency and copout. Might we feel inadequate
> > because we couldn't come through in the way our coho neighbors
> > would?  
> >      So, ideally, while there's lots to be said for our being
> > integrated into communities that aren't ghettoized for the ill,
> > could sufficient understanding and acceptance of our varying limits
> > occur for this arrangement to work?  Since many of us are very
> > educated, skilled, and resourceful, could our assets be found to be
> > sufficiently compensatory?  Not to mention the virtue that might
> > come to these communities from including a fuller range of life's
> > realities, which can always hit--in one form or another--one of the
> > presently well members, just as it did us.
> >      The key issue is how to achieve a balance between serving our
> > needs for contact via proximity, getting help in coping with
> > everyday chores, and having easy access to the out of doors yet not
> > live in circumstances that stigmatize us or reinforce or inundate
> > us with illness.
> > 
> > FUNDING
> 
> > So many people in this country, no matter how well paid they are,
> > are just one or two paychecks away from poverty.  They simply have
> > little in savings.  But even if you do, on disability income,
> > without a working spouse--sometimes even with one--funds soon get
> > depleted and you're catapulted from economic comfort to difficulty
> > or poverty, and dependence on state welfare of various sorts.  
> >         Hence, to establish coho communities or enter existing
> > ones, public agencies or private organizations will have to
> > recognize this need and provide support.  Otherwise, most people
> > who are ill with this condition will have to remain in their
> > current situation, struggling for needed assistance and facing
> > longterm isolation.  Not a recipe for recovering health.
> > 
> > RETREATS
> 
> > For many whose degree of disability is such that they can't go to
> > regular vacation spots, we need places for PWCs in crises or with
> > the human need to simply get away.  
> >       As is typical of many people with this illness, I haven't
> > been out of my city for eight years.  I long to be amongst trees,
> > near water, or the mountains.  My view out my window is of another
> > high rise across the street.  A view of bricks and concrete grows
> > old fast and is not very renewing.  
> >                                     August l995
> > 
> 
> ENDNOTES:
> 
> l.  THE CFIDS CHRONICLE is the major national journal (with international 
> distribution) devoted to all aspects of chronic fatigue syndrome (CFS).  
> It includes scientific papers by physicians and basic scientists, reports 
> on public policy, patient advocacy, and other matters.  "CFS" and "CFIDS" 
> are acronyms that refer to the same condition.
> 
> 2.  The author is a sociologist of medicine who, before falling ill with 
> CFS, was finishing the research for her doctoral dissertation and working 
> as the director of psychosocial training in a family medicine residency 
> program at a large urban teaching hospital.  She taught on hospital wards 
> and outpatient clinics while medical residents were seeing their 
> patients.  Her goal was to help improve the quality of medical diagnosis 
> and treatment by integrating relevant knowledge and insights from the 
> fields of sociology and psychology.  Curently, when suffieciently well, 
> she edits and rewrites/co-writes books, pimarily but not exclusively, 
> autobiographies of people in medicine.
> 
> 3.  The term "PWC" has come into usage as an acronym for the term "people 
> with chronic fatigue syndrome."
> 
> 4.  An artist friend of mine said she thought that instead of our paying 
> for these services, we might provide a few housing units or studios for 
> artists and writers.  They could work for us part time in exchange .
> This would have the added advantage for us of having the stimulation and 
> presence of people who are well.
> 
>