Thursday, May 24, 2012

The objectified, the bystanders, and those living within the circle of care-- from the borders of bedlam, to beyond.

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.