Hello to Felicity and listmembers
Thanks for your response. It raised something that I was thinking about
while reading the previous emails about the social model of disability and
its perception by some, to be a rigid sanctum sanctorum. I think Mark
responded to this well.
I wonder Felicity, whether you ever feel that your experiences and your
world view conflicts with this thing called the "social model"?
The rhetorical nature of this question reflects my own feeling that only
*some* subjectivity is affirmed by the theory.
On an entirely different topic, does anyone have any thoughts about how or
why we use of "foreign" (non-English) phrases and words? Is it like smearing
vaseleine on a camera lens?
Best regards
Laurence Bathurst
School of Occupation and Leisure Sciences
Faculty of Health Sciences
University of Sydney
PO Box 170
Lidcombe NSW 1825
Australia
Ph: 61 2 9351 9509
Fax: 61 2 9351 9509
Email: [log in to unmask]
Home Ph: 61 2 9818 2050
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Lost : - My leisure. If found please return it to me -
it has great sentimental value and holds many fond memories.
Lost : - My self. Last seen within my leisure
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----- Original Message -----
From: "Felicity Maddison" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, March 24, 2001 12:36 PM
Subject: re the language and baggage of caregiving
Catherine and list members,
I have read the comments on this subject with interest and in particular
Laurence's question of where along the continuum of the 'need for support'
does the relationship change from one of essentially normative familial
relationshipships to that of caregiving? Firstly I will provide a
definition of a Carer as defined in HACC Legislation and Guidelines here in
Australia. "A carer is a relative, friend or neighbour who provides unpaid
assistance in the activities of daily living to a person who is frail aged
or a younger person with a disability." A person who is paid a proper wage
and enjoys Award protection whilst providing the same type of care is, in
this State, covered by the Disability Support Workers Award ergo they are
Support Workers.
I have previously identified to the list that I am the sole parent of a
daughter (24) and a son (22) who both have multiple disabilities and both
require significant assistance in their daily lives ranging from assistance
with personal hygiene/grooming, financial management, household maintenance,
decision making, meal preparation, supervision etc. Neither can travel
independently. Nine years ago I faced the situation of either relinquishing
my children to State care or leaving the workforce and my career in order to
provide the supports my daughter and son require on a full time basis. I
left the workforce and my normative role as a parent breadwinner and became
a fulltime carer. Government acknowledges my inability to work due to care
commitments and pays me income support equivalent to the Old Age Pension. It
is called a Carer Payment. In order to receive this payment, however, one
must be able to prove significant financial disadvantage as it is both
assets and means tested. One must also demonstrate a minimum level of Carer
Burden via the Adult Disability Assessment Tool which scores the support
needs of the person/s being cared for. No matter how many people you may
support only one Carer Payment is available. The entry point to Carer
Payment is a score of 25. Government obviously feels this is a significant
level of Carer Burden - after all they don't want too big a financial drain
via the Welfare system. Just out of interest the combined scores for my
daughter and son total 145.5 and I have friends who care for totally
dependent sons and daughters whose scores exceed 160. We are paid the same
level of income support as those whose Carer Burden is identified as 25. A
condition of this payment allows me to work or study for 20 hrs per week
and tells me I may have 63 days respite each year. What it does not do is
provide the substitute supports for my son and daughter so that I may avail
myself of their generous offer. So out of the available 168 hrs/week the
expectation is that I will be "on duty" a minimum of 148hrs. If I want time
off I must find and pay for the substitute supports myself out of my meagre
income and at a cost of between $15-25 per hour. Day options for my
daughter and son, they are unable to enter the paid workforce, operate
between the hours of 9am-2.30pm (pre-school hours for adults) and are closed
for approximately 6 weeks per year. This day option costs 25% of their
pension each week - 52 weeks of the year (easier for the service to work out
costs on a yearly basis and ignores the 6 week closure or any absences due
to illness). Money for community access activities are extra.
You don't have to be Albert Einstein to work out that given our family
arrangements and the lack of outside supports not one of us is leading an
individual or age appropriate lifestyle. I realise of course that it is
entirely selfish of me to want to resume the "ordinary" parental role that
my peers without disabled offspring enjoy and for my daughter and son to
enjoy the benefits of individual choice in lifestyle, that it is selfish of
me to want to resume my career, earn a decent wage in order to provide some
sort of financial security for myself and my son and daughter, afford the
extra costs associated with disability, and Heavens Above perhaps even be
indulgent enough to take a day off or a holiday, be spontaneous or be a
sexual being. In order to overcome these rampant selfish feelings each day
I stand in front of my mirror and firstly sing Kylie Minogue's "I'm so
Lucky, Lucky, Lucky,Lucky. I'm so Lucky I'm invisible, I'm so lucky I have
no voice or choice and the reason I am so lucky is because while I can still
feel pain, I'm not yet dead" then repeat the following mantra over and over.
Felicity you are to fortunate to be exploited. Felicity you love being
exploited. Felicity must not feel overwhelmed and burdened. You are doing so
much for society. You are an enabler - You enable Government to abrogate
its responsibility to its citizenry. You are a saver - You lessen the
taxpayer burden. You are a contributer - the care role you do saves
governments and taxpayers hundreds of thousands of dollars each year. You
are a facilitator - the savings you generate facilitate growth in the Human
Service sector. You are a role model for industry - it is the work you do
that others seek to emulate in paid career opportunities. You are fortunate
that you cannot afford alcohol - think of cirrhosis. You are fortunate to
be celibate - think AIDS and STDs. You are fortunate that your bills exceed
your income - a day of fasting per week is good for body and soul. You are
fortunate to feel numb, depressed and have no hope - you will never be
disappointed. But most of all you are extremely fortunate that Academics
find you to be an attractive source for research and following a
longitudinal study and a frenzy of indulgent self stimulation they have
identified that feeling burdened by your care role is a mind over matter - a
self fulfilling prophesy. Thank God for that! I thought society just plain
didn't give a stuff. "Oh I'm so Lucky.Lucky,Lucky,Lucky"
Felicity
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