Good morning Laurence, and Dona, and Barbara, and all the others who are
arewatching or participating.
It seems the stoush has moved away from where it started. Picking up on
Laurence's statement:
>It seems that the role of the mother is different to that of the carer.
>This is where there is a qualitative and quantitative difference between
>mothers of regular children and the mothers of children (or adults) with a
>disability.
Firstly, there is a cost to families, parents, and , I agree with Laurence,
particularly mothers, In raising a disabled child. There are two components
to this:
1] Non transferable. This relates to things like feelings of guilt, and
loss, anxiety, emotional stress, and plain worry, and the thoughts of what
could have been, but never will. These things will always be ours, and
though we may get used to the pain, it does not get better.
2] Transferable. This has largely to do, not with the disability, but
with dependence. Parenthood brings with it dependence. a total dependence
with an infant, which then gradually reduces to very little upon maturity,
rising again when dependence increases in old age. This 'bathtub curve' is a
normal sequence of events. If we now superimpose the graph for a disabled
child we see that the reduction in dependency is slower, and the dependence
upon maturity is higher. The actual shape of this line is determined largely
by the support needs of the person with disabilities, and with very profound
disabilities may in fact rise from the level it is at infancy.
The area between the 'normal' and disability graph, naturally specific to
each person with a disability, we colour red, and call it 'abnormal
dependence'. I believe that Laurence's parent group reacts to the 'red
zone', the loss of self, of space, of a life of their own. It is in this
area that dependence can be transfered to others, for love or money, and it
is in this area I believe services need to be targeted, to lower the
abnormal dependence line, episodically or permanently. Of course well before
carers' graph starts to rise because their support needs are increasing, the
entire red zone should become the responsibility of others if the parents
incapacity or death, is not to leave the disabled person in free fall.
If you wish to contact me I will be happy to send you my thoughts on 'The
Cost of Disability', and 'Lifecycles and the Bathtubcurve' as an attachment.
Enjoy, rgds John-----Original Message-----
From: Laurence Bathurst <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: 13 July, 1999 08:59
Subject: Re: Parents & stress
>Hi Dona
>
>I hope this answers yours as well as Barbara's questions and concerns. I
>am simply not able to state the entire research process and exactly how all
>statements were contextualised. Only to assure you both that I agree with
>all you say.
>
>
>At 02:13 PM 7/12/99 -0600, you wrote:
>>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.
>
>It was easy to assert. It is alas still a hypothesis that came from my
>study. Thats why I said that it was 'my' conclusion.
>
>>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.
>
>Indeed. I acknowledge the social construction of role and the role
>presumptions were not mine but those of the mothers interviewed.
>Alternative solutions to stress was the next part of the study. The study
>was on 'leisure opportunities for the mothers of people with intellectaul
>disabilities' so we were looking specifically at opportunities to have this
>elusive thing called leisure. Respite care claims to provide time for
>leisure. It provides time, however the time is usually prescribed.
>Leisure cannot be.
>
> 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.
>
>Respite care currently seeks to provide 'time out' for other duties. In
>Australia it states in policy explicitly that respite aims to *Maintain the
>role of the carer*. In the same documents they say that the carer's role
>is a stressful one that may impact upon a person's health. I read this to
>say "we know you are stressed and we acknowledge the risk to health but we
>want to keep it that way because its a cheaper option for the state".
>
>
>>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'?
>
>It seems that the role of the mother is different to that of the carer.
>This is where there is a qualitative and quantitative difference between
>mothers of regular children and the mothers of children (or adults) with a
>disability.
>
>Mothers talked of the expectations of these roles. A mother with a child
>without a disability could be seen to encourage exploration and
>independence with their children for instance, letting the children expose
>themselves to situations involving risk. This was different for the mother
>(or carer) of a child with a disability. There was a perception (real or
>otherwise) that to expose their child to the same risks (eg those involved
>in play) was in some way irresponsible or bad judgement.
>
>
>>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).
>
>The guilt was not anything to do with the guilt of 'having a child with a
>disability'. In fact that sort of guilt was not reported. The guilt was
>in taking time for oneself. Doing anything for oneself often provoked a
>guilt feeling like the mother should not be taking time to themselves but
>devoting more time to the needs of their child (adult).
>
>>But then you compound the role-guilt-identity equation, by discussing
>>time and 'space.'
>
>The issue of time and space. Yes..Time was not an isolated criterion for
>leisure. To have time is not to have leisure. It seemed the concept of
>what was needed was better described as space. While mothers may have
>found time for themselves they would also worry about the child when
>leaving the child with the father or with other people. Time provided by
>respite was very valuable but in some cases, it was felt that to have 4
>hours here and 4 hours there, it was impossible to use the time how one
>wanted to. Other activities may be completed in these times but more often
>it was shopping or other tasks related to roles. The time was rarely taken
>for the 'self'.
>
>
>>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.
>
>I agree on all points. It seemed to me that if it was perceptions and
>expectations of roles that were problematic then thats what needed
>attention. Thats why I suggested affirmation and acknowledgement. What I
>meant by this was instilling a way of thinking and perception of the
>mother's right to have space for the self without feeling non-deserving.
>Mothers support groups following weekend camps were used in one service I
>examined. The problem was of course in returning to family situations that
>reinstituted the previously learned roles.
>
>>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.
>
>This rationalist and insidious approach was what I was reprimanding in the
>study. It seems to be self contradictory and aimed explicitly at economic
>outcomes. Unfortunately forums asking 'carers' what their needs were in
>terms of respite (so there was consultation) always framed the question and
>the thinking in terms of respite care as we know it. Rather than asking
>what can the state provide that would make the caring more satisfying, they
>ask what are your respite needs. No opportunities for lateral or
>innovative thinking.
>
>>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.
>>
>>
>I believe it is easy to be critisised for work in such a forum because you
>cant provide all contextual information. Questions regarding my sampling
>are fair and my sampling certainly could have been better. However, I
>cannot possibly do justice to my analysis. How did I come to these
>conclusions?...My study only looked at constraints to leisure. Many
>mothers also shared with me all of the positive aspects of raising a child
>with a disability too. For others, certain of the constraints were not an
>issue.
>
>>
>>
>>
>>Dona M. Avery
>>Arizona State University
>>Tempe, AZ 85287-0302
>>www.public.asu.edu/~donam
>>
>With best regards
>
>Laurence Bathurst
>University of Sydney
>School of Occupation and Leisure Sciences
>Faculty of Health Sciences
>East Street (P.O. Box 170)
>Lidcombe NSW 1825
>Australia
>
>Ph+ 61 2 9351 9509
>Fax+ 61 2 9351 9166
>E-mail [log in to unmask]
>
>Note: This is the e-mail address for my home as well
>
>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
>There is not one shred of evidence that supports the notion that life is
>serious.
>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
>
%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%
|
