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Background -

Disability Rights and Personal Economic Responsibility

In the last several decades, American society has undergone a socio-governmental paradigm shift in the manner in which it regards people with disabilities.  Only a few decades ago, Americans with significant disabilities were not people whom architects and other planners included in their design schemes.  Those Americans could not expect to function in any predictable way in any part of the built environment.   Moreover, policy planners did not consider the needs of people with disabilities when creating regulatory structures.  Any accommodations or "special" considerations provided for Americans with disabilities were considered to be charitable in nature. Equal opportunity and equality of treatment for people with disabilities was neither socially expected nor deemed legally or morally required. Instead, our society and its foundation of law and government relegated people with disabilities to accepting only the amount of inclusion and opportunity that
others provided on a voluntary basis.  The old social and cultural model was essentially based on charitable notions.  Neither our architecture, our schools, nor any social, private, or government program needed to take account of the needs of people with disabilities in creating our world.  If a person with a disability wanted to be included, it was the responsibility of that person alone to make whatever adjustments were necessary for him or her to fit into a very unwelcoming world;  the entire burden of disability fell upon the individual with a disability because they were not "normal."

An implicit social requirement of this charity model that continues to some extent today is that people with disabilities are socially expected to demonstrate gratitude any time that "special" consideration or inclusiveness is provided.    As a consequence, people with disabilities have been socialized to learn to profess gratitude for any inclusion at all -- even if their treatment is inferior or their inclusion haphazard or merely an afterthought.  Children with disabilities were lucky to be given schooling of any kind -- and therefore were seen as "ungrateful" when they complained about its inferior nature.  People in wheelchairs were supposed to be pleased that they could get in to the restaurant at all -- even if that meant they had to go around back by the garbage cans to do so; those people were also supposed to be happy that there was a place for them to sit in an arena -- even if the seats were in a "wheelchair ghetto" in the least desirable seating area; and, those people should be happy that there was a single room in the hotel that had an accessible bathroom -- even if there was no view from the window, a long walk to the elevator, only a single bed, the room reeked of smoke, and was never on the club floor.  The stereotypical "chip on the shoulder" view of a person with a disability stems from that charity paradigm: an "ungrateful" person with a disability has a "chip on their shoulder" when she expresses displeasure, because socially she is expected to be "grateful" for the "special treatment" (after all, our intentions were charitable, however clumsily they were carried out).

Because of the extremely inhospitable built environment - which included both structures and modalities of transportation -- people with significant disabilities found it extremely difficult or impossible to patch together any reasonable lifestyle that could enable them to achieve self-support even when they were able to surmount the huge educational, social and policy barriers to productive employment.  The irrational discrimination against people with disabilities pervasive throughout society precluded many Americans with severe disabilities from being able to participate in the private marketplace in a meaningful way.

It was therefore quite natural for the general public to perceive people with disabilities as having very limited existences.  The natural assumption was that it was the disability itself that caused the limitation.  A natural by-product of the thinking that a disability was "abnormal" was that disabilities were seen as mere "failures" that simply had not yet been "cured" by medical science.  We still see prominent displays of that thinking in the fundraising operations and budgetary priorities of many voluntary health organizations.  People with disabilities are portrayed as cheerful yet pitiful people, whose limited lives can only be improved if some organization does something for them.  The organizations are generous with the medical research budgets and provide a relatively miniscule amount of funding for services for current constituents, because anything short of a cure is deemed "salutary" at best.  To be "cured" (or, "fixed") is the only thing that will truly improve the quality of life of a person with a disability in a meaningful way, it is thought.

This view of disability is still the norm within the medical profession.  Rehabilitation medicine -- the branch of medicine most pertinent to people with disabilities in their "uncured" state -- is treated as a lonely stepchild in the medical research funding universe; the best and brightest physicians are often steered away from the field of rehabilitative medicine for that reason and because it is regarded as a field with little prestige.  Further, physicians are still trained to regard disabilities as having been produced by a medical science that is just not advanced enough.  In essence, people with disabilities are still regarded by organized medicine as the failure of their own science.  Until they are "cured" of their disabilities, it is thought, they will have incomplete or unfulfilled lives.

The philosophical underpinnings of American allopathic medicine prevents the science from regarding the lives of people with disabilities as complete in their own right.  It is no wonder, then, that medicine has done such a woeful job of making the lives of people with disabilities better on a community-wide basis.  If organized medicine wanted to make a difference -- a real difference -- it would address the environmental factors that limit people with disabilities' lives as public health issues.  [Of course, given its history, people with disabilities are also loathe to entrust those subjects to the province of medical professionals!]  Architectural and transportation barriers would be a matter of concern to public health specialists in much the same manner as are gun violence, domestic violence, and child abuse.  At least a tiny portion of the annual expenditures in public health would be used to make the environment more hospitable to people with disabilities (and concomitantly safe and more user-friendly to children and the elderly).  Medical professionals would not be complicit in creating architectural barriers in their own facilities  if they had even an inkling of their public health responsibilities in this regard.  But, inaccessibility in medical facilities is so rampant, that special sections of the Americans With Disabilities Act were written specifically to address those issues.

It is therefore no wonder that people with disabilities have rejected the traditional paradigm.   People with disabilities recognize that American allopathic medicine lacks any meaningful understanding of quality of life for them.  Instead, people with disabilities have developed a self-perception of their lives that is more positive and empowering.  The basic philosophical premise of that movement is that people with disabilities regard themselves as whole and capable people.  They are not waiting for a "cure" in order to begin their real lives.  They have real lives now.  They are capable -- with proper supports -- to live as enriched a life as any person without a disability.  They also reject paternalistic tendencies of government and social service bureaucracies that limit their opportunities "for their own good."  The paradigm incorporating those new self-perceptions is often referred to as an "independent living" philosophy.

In this way, the independent living movement is seeking for people with disabilities the equality and basic civil rights that minority Americans sought through passage of  civil rights laws.   Unfortunately, the independent living movement  has also advocated expansion of  government-funded social programs as a strategy for so-called "independent living."  For example, and notably, one of the highest priorities of the community is to secure funding for noninstitutional long-term care for nonelderly people with disabilities through Medicaid, but no similar effort is made to make private insurance resources available to people with disabilities. 

Although people with disabilities are clearly asserting their right to live their lives independently in an inclusive society, their political leaders are simultaneously urging the government to provide a broader basis of direct financial support for people with disabilities.  To the extent that these supports represent expansion of anti-poverty social programs or are otherwise means-tested, this approach renders the term "independent living" an oxymoron.  The independent living movement can't have it both ways.  Either people with disabilities -- even severe ones -- are capable of living complete lives  -- and only need government help in eliminating barriers -- or they are not, and we should not kid ourselves.  Of course, people with disabilities are as many and varied as the rest of the population, and some will be easily independent, while others will need more assistance.  To the same extent as the general public, people with disabilities need social supports; however, if the independent living movement asserts a greater or special need for financial supports for people just because they have disabilities, without clearly distinguishing between these people with disabilities and others -- that assertion becomes an implied admission that people with disabilities cannot be expected to exercise the same financial responsibility as able-bodied Americans.

Thus, our movement is at a crossroads:  we need to decide whether we actually believe we can be independent -- including economic independence --  or we should retract our demands for complete independence and concentrate on funding priorities.  If people with disabilities are in fact employable, then people with disabilities should not, as a matter of principle, have any more or less interest in regulations governing poverty programs than any other discreet segment of the public.  People with disabilities are a mixed group; some need more support than others.  However, if we prioritize the needs of people with disabilities who require fiscal supports, and fail to emphasize the equivalent responsibility of other people with disabilities who should take charge of their own economic lives, we will have committed political suicide for our civil rights goals.  We must clearly distinguish between the political needs of economically dependent people with disabilities and the truly independent people who ask only for barrier removal and equal opportunities.  Without such a distinction, we cannot simultaneously claim to represent both and achieve any significant political goals for either group.  In fact, arguably, simultaneous representation is a conflict of interest.

If we wish the public to think of us as capable people, then they need to view us as economically independent people as well.  Unless people with disabilities take personal responsibility for their own economic lives, they can never truly be independent.  Every student of politics knows that when the government pays the bills, it makes the rules.  And, those rules are not based on civil rights or any other rational scheme.  Instead, government funding rules are always based on political expediency.  They can change from year to year, and are not developed based on any rational scheme of need.  For that reason, as a planning professional, I must regard government programs as the single least reliable financial source for long-term planning purposes.  Therefore, government programs should only be used in planning when no better choices exist.

To the extent that people place their futures in the hands of government programs, they not only lose the predictability that can come with private contractual agreements from reputable organizations, but concomitantly also the freedom of choice and stability that financial independence can buy.  If people with disabilities as a group do not take responsibility for their own economic futures, it will not matter how many civil rights laws we pass -- people with disabilities will have no more financial freedom than government funding programs will choose to give them in any given year.

The paradigm shift in our thinking will not be complete until we believe that people with disabilities can and should be responsible for their own economic future.  Until that day, people with disabilities and chronic illnesses in the United States will never be able to demand -- as a matter of right -- fair access to the economic tools that are critical to achieving financial security for the general public.  As long as people with disabilities presume that they are not responsible for their own economic destinies, or that they are solely dependent upon government entitlement programs for fiscal survival,  there is no economic imperative to make insurance, workplaces, or government employment policies more accessible or accommodating for people with disabilities.  If we want real freedom, we need to pay for it ourselves.  And I, for one, believe that people with disabilities are capable of achieving true economic independence as long as the economic playing field is fair and inclusive.

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This site was last updated 07/18/08.  Copyright © 2003 by Laura D. Cooper, Esq.  All rights reserved.