Hi Laurence (and others interested),

We ought to compare our studies with parents; there are some 
parallels.  I was interested, though, in the ease with which you 
assert that

>  it is not *having* a child with a disability that causes
> the stress, its the conflict of parental and carer (and sometimes
> wifely) roles that causes friction along with the expectations that 
>go along with those roles.

Seems to me that "role" (not to start nitpicking on inverted commas 
again, but...) is something societally constructed, and that you give 
too much emphasis on role presumptions and conflict, and not enough 
on alternative solutions to stress, that society might provide.  You 
mention respite care, towards the bottom of your message, and 
inadequate as it is, that is one example of how our culture--with its 
'family values' and all-- might assist such parents.

I'm confused by your next statement:
> The roles of mother (or father but I feel moreso - mother)
> and carer are constructed in much the same way that disabilities 

   How so?  I believe perceptions of, responses to, and life-
situations for, such parents are often similar to those which 
impairment effects... but 'roles'?

And I worry that your conflation of the concepts of 'guilt,' and 
'selfhood' and 'role' might be dilluting the problem here, when you 
> The one thing that all mothers interviewed concurred with (without
> solicitation) was the expression of the loss of self. The barriers 
> to selfhood included : guilt, feelings of non-deservedness, the 
>attitudes of other people, the isolation and worrying about the 

Things like guilt and role may enter into notions of 'selfhood,' but 
they are not the same thing--except as society has historically 
ascribed natal-'deficiency' to mother-fault.  In earlier times, one 
of the prevalent beliefs was that disabled newborns were caused by 
the mother's hearing or seeing something ugly or evil when she was 
pregnant.  In this case, role and guilt may coincide in the mother's 
identity-construct, and perhaps these factors are not shared by the 
father (thanks to a paternalistic, capitalistic society).

But then you compound the role-guilt-identity equation, by discussing 
time and 'space.'

Both of these factors may be role-situated, because fathers often do 
have more rights to, and opportunities of, personal space and free 
time.  Fathers could help out more, and help alleviate the guilt Mum 
feels, too--except that many times Dad flees.  Don't have the cites 
at hand, but something like two-thirds of the male parents opt out of 
family responsibilities and roles, altogether.  Still, the resentment 
which the mothers in your study spoke of, need not be transferred to 
the child, if there are other ways to realize personal 'space' for 
the mother.

You write that
> respite care as it exists. . . may provide time out but it seems 
>that time is not the issue.  Rather, space is the issue.  

I disagree.  Time constraints are the crucial reason that 'space' and 
positive selfhood elude the parent involved in raising a disabled 

Todd and Shearn (Disability & Society 11:3, 1996 pp. 379-401) present 
an exceptional argument that time IS the issue, and that parents in 
their study of disability made "repeated and frequent references to 
things temporal. . .such as clocks and schedules and how time was 
experienced as a constraining reality" (382).  The parents felt that 
professional and public conceptions of disability "were based upon an 
inadequate and too narrow an understanding of how they experienced 
'time'. . .[P]arents struggled to maintain a set of aspirations for a 
typical life," given the demands on their time (379).

Rowitz (1988) and others have referred to the tendency within 
families of disabled children and adults to become "perpetual 
parents," but McKnight (1981) claims that this is due to obligations 
and role-expectations [that] are part of the stereotype of such 
parents, whose "needs are defined, identified and responded to by 
others" (Todd & Shearn 380).  I know full well how time becomes a 
critical, well-guarded, insufficient commodity in such families; but 
I also feel that the many obligations can and should be shared and 
not role-defined or restricted to people located in the role of 
parent.  Respite care, through private services, community, church, 
extended family, a network of parents in similar situations 
themselves, etc., needs to be frequent and easily available, so that 
parents do not succumb to what Skaff & Pearlin 1992) describe as 
'role captivity,' or to what Parry (1990) describes as a restricted 
lifestyle which "devour[s] the entire person. . . .[and] weaken[s] 
[social] ties. . . ." (qtd. in Todd & Shearn 381).

In our two-career, ever-striving, working-more-than-resting culture, 
respite care has ranked as a low priority in service options for such 
families.  Options for 'coping' (which ignore disabling societal 
factors that produce and compound stress) seem to be of the all-or-
nothing variety: either surrender your personal interests and 
aspirations for the sake of caring for the child on your own; or 
relinquish all parenting duties and satisfactions, by letting the 
State raise your child.

Respite care is a third solution to over-burdening the families.  I 
suppose abortion or euthanasia are options, too; but IMHO if society 
were more human-focused and less concerned with 
profit/production/prettiness, such extremes would never be considered 
humane in any stretch of the word.

Flame me, scorch me, tar me, torch me... that's what I believe.

Dona M. Avery
Arizona State University
Tempe, AZ 85287-0302