There have been times around the holiday season of giving when I have
thought, “I give to others every day. Will anyone
give to me? If they do, what do I need
or want?” I wasn’t thinking of a sweater
or a new pair or socks – I was thinking of care. I was daydreaming about someone caring for
me, the caregiver.
Eva Feder Kittay is a philosopher and mother of an adult daughter,
Sesha, who has severe cognitive disabilities.
Eva also cared for her ailing and elderly mother until last year.
Eva coined the word doulia to
describe a new paradigm for reciprocity for caregivers in the community. She
describes doulia as an ethical principle that recognizes giving care as an
important contribution to the overall good of society. “We can ask whether
parents or kin who assume the role of caregiver should have claims on the
larger society to support them in their efforts to provide care. If, for all
the effort and care in raising a child with disabilities into adulthood, there
is no payback (conventionally understood) to the society at large, can we still
insist that there be a state interest in helping families with the additional
burdens of caring for a developmentally disabled child? Is there a state
interest in assuring families that their vulnerable child will be well cared
for when the family is no longer able or willing to do so?”[i] Kittay
answers her own question with a resounding yes and that response is rooted
firmly in her own mothering experience. She describes a concept of
interdependency or “nested dependencies” that recognizes the inevitability of
dependency as a fact of being human. It is via the idea of doulia that
reciprocity can be realized through policy because the driving force is an
equality that “our full functioning presumes our need for and ability to participate
in relationships of dependency without sacrificing the needs of dependents or
dependency workers.”[ii]
Here Kittay is advocating an ethical framework and moral obligation for
society to look after caregivers so that caregivers can carry out that care
without sacrificing their own wellbeing. She is talking about ‘payback’ for the
caregiver.
We know doulia as friends and family members who help a new mother by
watching the older children and performing household chores so that the mother
can give total care to her newborn. Implicit in this natural family tradition
is the understanding that the mother is “owed” care because she is giving care
to a much loved, highly vulnerable newborn. Her first priority is to give the
best care possible to her beloved charge.
Over the past few years, I have been thinking about how to ignite a
wholesale shift in thinking about care across society. Kittay’s ideas about doulia and inevitable,
nested dependencies provide a great jumping off point for a new conception of
care for the caregiver.
But where do these ideas lead, practically speaking? Well, I believe that employers should have a
two-pronged corporate social responsibility program – family care and community
care. Assuming that some employees have
caregiving responsibilities that are sometimes onerous, causing them to claim
sick days or leave to look after a critically ill spouse, elderly parent or
child with a disability, the company could and should support its own. The second prong of the corporate social
responsibility strategy would be a focus on the needs of the greater
community. Another idea would be to have
local volunteer bureaus match families with volunteers. My local volunteer bureau matches only
willing helpers with agencies, never with needy private citizens.
Kittay is right. We don’t blink
an eye when people rush to help with household chores of the new mother. We instinctively know that she needs to have
her full attention on caregiving and the duty of others is support that
role. So why are older caregivers any
different? They aren’t. And if long-term caregivers don’t receive
long-term support, they and their charges will suffer. Doulia is a concept worth thinking about and
acting upon this giving season and all year round.
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