Physical health, mental health, mental
abilities—among the “normal” and the differently-abled (challenged and
gifted)—as the “higher species,” humans have long separated, described,
documented, and dealt with (for better or worse) family and community members
enduring some state of injury, disease, or condition which alters their ability
to succeed, cope, or even survive in general society. Folk lore, arts, writings
and institutions have, for centuries, acknowledged, if not improved the
condition of the differently-abled within their communities—and have long, if
inadequately, recognized the frequent companions of untreated
disability/different-ability: poverty, ignorance, and isolation (of
individuals, or whole groups). From appearances in nursery rhymes and Breugel paintings,
to harsh realities of slave galleys and circuses where the different were
paraded and exploited for the amusement and profit of the “normal” or the more
powerful, the costs of being different have long weighed heavy on the shoulders
of the afflicted.
The catch-term “mental illness”
(including Alzheimer’s, dementia, personality disorders, substance-related
disorders, epilepsy and other neurological disorders, and other conditions) has
often been grouped among “non-communicable”
diseases—running distantly behind global awareness of cardiovascular diseases,
lung diseases, cancers, diabetes and organ-deteriorating diseases. Improving
genetic study technologies are showing links between maternal health, child
health, and possible hereditary and environmental causes contributory to many mental
as well as physical diseases.
Despite increased awareness, human-rights
and social-justice programs lag in their capabilities to address the physical,
mental, and community-health issues, even when deprivation and lack of status
contribute to the downward spiral of dysfunction and discrimination,
exacerbating health conditions through lack of options, care, and concern. Even
crowd-sourcing and internet local-to-global appeals struggle to get the
attention of funders, NGOs, research and care institutions and programs… and
the families and caregivers of the less-capacitated are caught in what many
consider a catch-22 of lose-lose options.
Many people lump differently-abled
children and adults, those with birth-related dysfunctions, profound
dis-abilities, autism, chronic-or-deteriorating neurological and/or physical
afflictions which curtail “normal” communication/participation and social interaction,
and severe/debilitating injury due to accident or malpractice together with the
mentally ill— if for no other reason than the perceived differences in
appearance, behavior and social participation from “The Normal.”
And many people do not want to be
associated with mental illness. The centuries of separation, exploitation and
exclusion have created stigma associated with “difference” which are sometimes
nearly impossible to overcome. Many people think there is no “hope” associated
with being differently-abled, ill, incapacitated—without ever seeming to define
“hope” itself (using it as a blanket excuse for lack of participation or
involvement), for in aligning with the “Many” comes the anonymity of
non-responsibility, the safety of escape, the lure of “backing the winner” and
avoiding the “loser,” the weaker, the disabled, the “other.”
Yes, there is a “global” health
community, albeit, on the non-professional side, loosely-knit and
sporadically-joined. Yes, there are local, community, national and
online/stateless efforts to raise awareness, funding, and treatment-levels for
the panoply of hereditary, communicable, chronic, non-communicable,
trauma-related, event-induced (et cetera) illnesses and conditions. World
Mental Health Day (held annually on the 10th of October) helps raise
awareness and global concern about mental health issues, awareness of treatment,
costs, and related effects and syndromes. And the opportunity to research
resources and techniques, to find mentors and affirming/supportive “friendships”
online have elevated options and opportunities for care to the realm of
possibility even in impoverished, remote, and underserved communities and
households.
However, while global estimates of the annual
costs associated with mental health/illness mount ever-closer to the trillion-dollar
mark, mental illnesses and programs to improve mental health and
chronic-illness treatment/care options struggle to get the attention of
funders. Perhaps part of the problem is exactly the nearly-overwhelming burden
of simply beginning to combat the massive imbalance built through years of
inadequate care, and lack of confidence for a sustainable future—for the
afflicted, and for the family/caregivers.
So, what are the costs of medical
challenges, to those who endure the injury or condition, to those who love
them, to those who provide care? Attendant costs, in some economic strata, of
care planners, legal teams, “entitlement” specialists, social/medical-aid
procurement specialists, public/private health liaison specialists,
therapy/rehabilitation providers, procurement/cost specialists,
personal-coach/counseling specialists… and tertiary costs: extra expenses for
transit, equipment, training, specialized wardrobes, site-accommodations,
service-accommodations, costs associated with inabilities to handle exigent
circumstances… and “hidden” costs: lack of access, the huge resources of
time/grooming/support needed to overcome perceived and actual discrimination,
the postponed realities of geriatric care for individuals who have spent their
live energies and life capital supporting the attendant costs of a disability
or chronic condition (whether as care givers or care recipients)—leaving few if
any provisions for the solitary shouldering of the entire burden of care when
old age separates need from sufficiency, “retirement” from security, and adds
the burden of “silencing” the marginalized by leaving them in isolated
backwaters seldom noticed by the flowing tides of people competing for money,
power, and life in an ever-evolving marketplace.
Without the capacity to change the
circumstances of an ongoing condition, the physical and mental realities of the
daily and nightly struggle to live in a body so afflicted, those who endure
illness or trauma already face, with aging, the liabilities of depleted assets
of strength, affluence, even basic inter/intrapersonal life/communication
skills.
Those who are able to rely upon a
network of support may have an easier journey in the short term, but unless
they are able to achieve and maintain a level of self-reliance or committed-ongoing
support, their apparent autonomy is tenuous, at best—and might collapse with
the removal of the assistance, accommodation, and/or access-due-to-affluence to
services needed to maintain a life of best-possible circumstance.
Sometimes the realities of this
dependency so paralyze the afflicted individual that they are unable to assume
a level of independence that they otherwise might have reached—perhaps fearing
the removal of support if they become “too successful”—and fearing, more, the
day when their abilities again are insufficient for the demands of the
lifestyle they have attained, this time, striving and struggling or even
failing without any network of support, because they have presumed to be
“normal.”
Sometimes, the bubble of support so
encourages the chronically or permanently differently-abled that they fly, like
Icarus, to heights beyond their capacity to sustain… and the sudden or
gradually-escalating demands for additional intervention by caregivers become
so unbalanced within the level of resources actually available, that these
efforts collapse, again insufficient to the demands of the lifestyle—this time
having exhausted and/or lost the network of support which had previously been
available.
Of course, there are myriad stages in
between, where the socially-aware and the self-or-insular-focused
dependent/differently-abled individuals alike find some balance which permits
the continuation of daily life, and myriad stages between the levels of
quality, or lack of quality, of those lives. And afflicted and care-giver alike
encounter all the myriad stages of feelings of dependency, frustration, guilt,
rage, wishes to escape or self-harm or suicide attendant to afflicted lives, as
well.
And so the afflicted capable of doing
so, and those who love the afflicted, the differently-abled, struggle to
provide, to constantly reassess needs, and constantly realign degrees of care,
support, autonomy, community in the fragile balance between security and
challenge, comfort and control, predictability/sufficiency and collapse/chaos.
Massively-invested family- and caregiver- circles pour life resources of time,
energy, attention, affluence and affection into the pooled experience of life
with a differently-abled circle-member. Other kinds of family-caregiver circles
assign the expenditure of resources to exterior providers, and the
differently-abled circle-member is relocated to an alternate place of
residence/care, and must form a new circle of experience, trust, expectation
and hope (or lacks thereof).
One of the contradictory realities which
caregivers and circle-members also face is the division between urban/rural
care-opportunities/resources, urban monetary-costs-of-living, urban
costs-of-quality-of-life, and the potential gross separation between individual
care and mass-cost-saving/profit alternatives. Uninformed, “qui tacet
consentire videtur” and/or participatory support for care-provider neglect,
malpractice or the flagrant misuse of power contribute to additional
injury/affliction. These include mental-care/health-care “providers” who
increase dependency to build economic inflow of predictable patient rolls; care
providers, educators, and others in the train-attain-ladder who withhold/deny
care/funding—or grant it based upon skewed demands for favors and other abuses;
care “givers” who hide behind appearances of adherence to protocols and
established practices while extending sub-standard, deleterious or even
damaging assessments/therapies/regimens-of-treatment to patients in their care.
In the quest for change, with national
economies teetering on the brink of bankruptcy, and national health-care plans
nearing insolvency, with health care providers hoping (logically) to work where
the amenities and necessities of care are available, the precedent has been
flight of intellectual and talent-based capital to urban centers. However,
increasingly overcrowded, food/water-and-resource-dependent urban centers have
become unsustainable, and a rebalancing of concepts of time, value,
remuneration, of monetary-vs-social credit might redefine concepts of “ability
and dependency,” of “success” of mastery of skills and the providing of care.
Cultural demands to care-for-your-own,
fear of the suspicion, stigma and sanctions associated with differences/and
visible-vs-invisible injury, illness and needs, and burgeoning global
poverty/limited non-renewable resources might, serendipitously, coalesce to
provide a sustainable solution to the mounting challenges, costs and considerations
of mental illness and mental, community, and social well-being.
That is, rather than turning to
self-attributions of self-imposed guilt (or sadly, even self-hatred) for being
dis- or differently-abled, or for self-imposed guilt or blame/hatred for somehow
contributing to the condition of the dis- or differently-abled dependent, individuals,
care-givers and communities can learn from the focus of those coping with
life-long afflictions—who strive to find the balance between living in their
“reality” and creating the environment of joy whenever it is possible to pursue
those activities/avocations/vocations they most love… Not all the
differently-abled are able, or want to find what might be enduring questions of
voyages of life, of interdependence on a global scale, of corporate, social,
legal, and “humanitarian” responsibilities for levels of care and the quality
of life—and whether that care is viewed as burden, sacrifice, obligation,
labor-of-love, continuation of life-as-it-is, or opportunity.
Many humanitarian projects and programs,
whether crowd-sourced/funded, privately-endowed, or beneficiaries of
micro-loans and other self-help sponsorship/aid-partnerships have provided
accumulating evidence that ground-to-boardroom community-involvement is crucial
to the successful introduction, implementation, and continuation of the
work/projects to-be-accomplished. Inclusion of the challenges of care for the
differently-abled of our global community among the inception-to-completion
planning procedures of humanitarian projects might sound glib and facile, but
in many of the best global healing traditions, the differently-abled, from
child to elder, maintain some sort of role or status in the community, involved
with not only healing rituals and shared responsibilities for self- and
assisted- care, but non-exploitative work or social-value contributions are
encouraged, with opportunities offered, and assistance provided, so each, child
to elder, can feel a part of the community network. This not only mitigates the
tensions and tolls of care for the immediate family, but affirms the awareness,
acceptance, and encouragement of the extended family, larger community, and
provides backup links and support for interactions with the professional
care-providing community.
While community and family-based care
cannot provide extreme interventions which may be required for specific cases,
the value of an inclusive social network, which does not disparage the efforts
of the differently-abled to live their lives at whatever level might be best
for them, which does not disparage nor diminish the efforts of the family and
community of care-givers to diminish the stigma, discrimination and
exploitation associated with extraordinary needs and the differently-abled, and
which does uphold the best of the traditions of healing and humanitarian care
in a manner which can lead to greater productivity of all the networked
family-and-care-circle members, lead to lowered costs and attendant costs, in
time, money, resources, and quality of life, and which can help bring greater
stability, through increasing reliance on networks of care, and on
internet-communication reinforcement of care and life-partnering, and a lowered
consumption of resources, time and money, as well as lowered costs.
And where extreme interventions and
extraordinary levels of care are required for specific circumstances, there
will be a more globally-equitable availability of measurably-reliable care
available, rather than supporting a huge network of procurement-management-specialists,
rather than the actual providers of care. In our increasingly interdependent
global society, the importance of sustainable mental and physical health can be
an overwhelming burden, top-heavy with high-end corporate and associated-costs
and charges, or a challenge and opportunity to actually deliver sound services
and care, needed for the health and well-being of each of us, in the smaller
and larger circles of community surrounding the differently-abled.
