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
>are.
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
say:
> 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
>child.
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
child.
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
www.public.asu.edu/~donam
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