Steve Mendelsohn is a blind attorney who is a member of the New York City
VICUG. His excellent book on tax strategies for people with disabilities
is available from recording for the Blind.
Kelly
NEW STRATEGIES FOR SYSTEMS CHANGE
By Steve Mendelsohn, Esq., September, 1996
"Systems change" is a term of art in the advocacy arena. While the
words have definitive meaning, the meaning and importance often
changes according to the situation in which the term is being used.
Technology represents perhaps the most important key to "systems
change", and to the full integration of people with disabilities into
society in the future. However, monumental levels of systems change
remain to be accomplished.
Each individual advocate must determine where change needs to occur
and how that change can be accomplished. The individual needs to find
his or her own answer to this question, based on an assessment of
personal skills, opportunities, and the situation confronting them.
However, an individual's potential to make a contribution is great -
whether at the national, state, or local level - to change laws and
attitudes. This paper suggests some approaches that may be useful
based on an analysis of some approaches that successful systems change
advocates have adopted in the struggle for technology access and civil
rights over the past two decades.
ATTITUDINAL CHANGE
Attitudinal change is regarded as key to the status of people with
disabilities. It includes not only the attitudes upon which others in
society act, but also includes the attitudes that people with
disabilities hold. Profound attitudinal change is thought to have
occurred over the past 25 years. This change can be witnessed in many
ways: (1) the rise of the disability rights movement; (2) the
enactment of major civil rights laws such as the Americans with
Disabilities Act (ADA); (3) greater consciousness of disability and
people with disabilities in the planning and activities of many
institutions; and, (3) greater visibility of people with disabilities
in many sectors of society.
What have these changes meant in terms of quality of life? How have
these changes improved access to education and employment, economic
and social equality? High levels of unemployment among people with
disabilities still exist. The income of persons with disabilities
still lags behind the incomes of their non-disabled peers. The media
still stereotypes persons with disabilities. A backlash against the
gains made by persons with disabilities is evidenced in Congressional
attempts to roll back rights and services through the ADA and
Individuals with Disabilities Education Act. All of this suggests that
attitudinal changes may not have brought the structural changes that
many had hoped for.
TECHNOLOGY AS THE VEHICLE FOR CHANGE
Technology may be the way to create positive attitudinal change -
creating economic and social progress in today's environment.
Technology is the one of the most important instruments for meeting
the goal of equal access. Technology's role in reducing environmental
barriers has had a profound influence in the integration of persons
with disabilities in society. However, some barriers still remain.
An historical illustration, drawn from the integration of
African-Americans into Major League baseball, may help to clarify why
this is so. Many people who supported integration did so based on
considerations of equity and justice. However, the more powerful
engine of change appears to have been the desire of fans, players, and
team executives to have the largest pool of talent available, and to
see competition between the best players in the sport. Using the
largest possible pool of talented players, the National League
dominated the all-star game over the American League in the years
following Jackie Robinson's (the first African-American who played in
the Major Leagues) emergence on the scene. Because the American League
was slow to accept African-American players, that League operated at a
significant competitive disadvantage throughout the 1950's.
Attitudes count for less as performance proves capacity and
excellence. Access to technology will give people with disabilities
the opportunity to perform on the larger playing field of society.
Their performance will help to change negative attitudes and
stereotypes.
TECHNOLOGY IN EDUCATION
The increasing emphasis placed on the use of technology in the
education of children illustrates how attitudes can be changed through
technology. The crucial role of technology in today's educational
environment comes from the belief that technology will be the key to
economic success for America's youth in the global economy of the 21st
century. Major efforts are now underway to ensure that technology is
available to the majority of schools and students in our country.
However, this opportunity should be as accessible to students with
disabilities as it is to students without disabilities.
At a time when various physical or sensory skills (e.g., mobility,
vision) were required to perform most job tasks, neither technology
nor attitude could be relied upon to open doors to people with
disabilities. Even when attitudes about persons with disabilities were
positive, this was sometimes not enough. Access to technology can
level the playing field when other skills (e.g., analytical,
intellectual, or "value-added") decide the value of an individual
seeking a job. Many practical distinctions between people with and
without disabilities no longer exist.
Many barriers and uncertainties remain to be overcome before that day
is reached when individuals with disabilities enjoy total equality.
However, the opportunities are greater today than they were in the
past.
WHAT NEEDS TO BE CHANGED?
If "systems change" efforts are required to bring about access to
technology, in what efforts should we be engaged? What would be the
outcome of our efforts? First, the entire range of technologies used
in society must be accessible to and usable by all persons - with or
without disabilities. Second, the cost of achieving this accessibility
must be met in a way that broadens the payment base. This means that
many people (e.g., personal computer customers) pay for the
accessibility in the cost of the product (e.g., a personal computer).
In this way, individuals with disabilities have access to the products
because the cost of accessibility is borne by many people.
People with disabilities generally do not have the money needed to
give them access to assistive technology. However, their ideas about
product design are needed so that the range of technologies can be
fully and effectively used to address the needs of all individuals.
This will lower the costs of access, including specialized software
and adaptive peripherals by spreading the cost to all users.
There is no great promise in using programs for people with
disabilities to meet these costs, since it is not necessarily to
people with disabilities that the required resources must be directed.
Nor is there any value in placing the burden on selected corporations
or institutions. This would create resentment and distort the complex
competitive, resource allocation and other balances that define much
of our economy.
ARE THERE EXAMPLES FOR THE TYPES OF SYSTEMS CHANGE REQUIRED?
Arguably, tremendous progress has been made in increasing the
accessibility of the physical or built environment to people who use
wheelchairs. Therefore, it is worth studying how this has happened,
who has paid for the progress, and what lessons can be learned.
Laws have obviously played a major role in causing this progress.
However, it may be difficult to decide if these laws cause change, or
are the result of other changes, or both. To the extent that landmark
legislation results from some combination of forces, what lessons for
advocacy can be learned from looking at the factors that brought these
laws about?
One can read the law and the congressional committee reports,
testimony, debates, and related legislative history of laws going back
to the Architectural Barriers Act of 1968 - without coming to definite
conclusions on these points. The Architectural Barriers Act required
compliance with accessibility guidelines in the construction and
renovations of buildings and facilities for which federal funds were
used.
The documents give the various reasons why supporters thought these
laws were desirable. However, there is no clear reason that, among all
the good things that might have been done in society, these measures
were appropriate and timely. Did economic necessity cause these legal
changes? Were the laws passed because of a sense of fairness? Was it
effective advocacy that led to these changes?
Also, what factors account for the laws aimed at opening the nation's
telecommunications system to people with hearing impairments or who
are deaf? A variety of laws, at the federal and state level, have
resulted in greatly increased availability of, and mandates for, relay
services, provision of TDDs, incorporation of amplification devices
into telephones, and other provisions. What lessons can be learned
from the systems change efforts that led to the enactment of these
laws?
It will be left to historians to decide why these legal changes came
about, and why they occurred when they did. However, it is the
responsibility of those of us living now to ensure that they continue.
Therefore, looking closely at the factors that caused change is
necessary.
PHYSICAL ACCESSIBILITY
One factor that may have made physical accessibility easier to obtain
than other forms of access is that the measures required to make
buildings or telephones accessible are not difficult to understand.
There is much uncertainty and misinformation about the exact
requirements and compliance costs of the ADA and other laws about
ramps, doorway widths, telephone amplifiers and TDDs.
However, these measures and devices are not complex. One can readily
visualize a ramp and understand its function. One can readily grasp
what a relay operator would do. Anyone who has had experience with a
teletype machine can grasp the function of a TDD.
A braille writer (a braille typewriter) can be straightforwardly
understood. If braille typewriters were the technology needed by
persons who are blind today, we might be discussing the progress they
have made as well. However, the conceptual issues involved in making
computer operating systems accessible to persons who are blind, or
making train timetables accessible to persons with learning
disabilities, are a lot more complex and subtle. Even when one wants
to achieve the goal, the methods for achieving it are not always
obvious or clear. Knowing exactly what to ask for becomes more
difficult.
In the previous advocacy successes, the access issues were clear.
However, persistent advocacy efforts were required for their
acceptance and accomplishment. Without the advocacy of a generation of
activists, clear ideas would have counted for little. The lesson is
that clear policy goals and effective strategy must be combined to
obtain meaningful systems change results.
However, we find less agreement on objectives and less certainty about
how policy goals are to be achieved in the disability community today.
The developing complexity of technology helps to explain this. This
can be understood if one considers some differences between the issues
faced in assistive technology access a decade ago compared with AT
access today.
The technology for building ramps or for providing relay service
existed in mature form. There were many design, materials, cost and
bureaucratic issues surrounding these technologies. However, nothing
had to be invented in order for these technologies to be carried out
or mandated. No one can credibly say that they cannot imagine how a
ramp would be placed at the door to a building, or how one would go
about lowering the height of an elevator button panel. There may be
resistance to doing it, but there is no fundamental mystery about how
it is done.
The way in which AT related public policy goals have been achieved is
by enforcement of the new laws and/or regulations that carry out the
law. This is important because without them, new injustices and
distortion in the economy might have resulted. Suppose that businesses
were not required to install ramps or widen display aisles to
accommodate wheelchairs in stores. Those establishments that chose to
become accessible would incur costs that inaccessible businesses would
not.
For example, a store that widens its aisles may sacrifice display
space. If one store did this, but its competitor did not, the
competitor might, in the short-run, gain some economic advantage.
However, the store or restaurant that made itself accessible would
profit in the end, because it would gain new customers from people
with disabilities, their families, and friends. The costs of making an
establishment accessible are often up-front costs. It cannot be
assumed that the merchant or restaurateur would be aware of the best
way for advertising the measures it had taken. They might not be aware
of the potential business coming from this sector of the community.
The best illustration of the role of mandates can be seen in the
Television Decoder Circuitry Act of 1990. That law required the
incorporation of a decoder chip, used for closed-captioning, in all
televisions with 13-inch or larger screens manufactured or sold in
this country after July 1, 1993.
The chip increased the cost of a new television set by an estimated $2
to $5 per set. The fact that all manufacturers were required to
install it prevented the competitive warp in the economy that might
have resulted if it had been left to the manufacturer to install the
chip voluntarily. Probably, none would have done so on its own. No
mechanism existed for an industry-wide, voluntary agreement to do so.
However, with the mandate, no one noticed the difference. Even the
most fanatical proponents of the backlash against disability rights
have not contended that the decoder chip has injured consumers.
As this example suggests, the most successful advocacy efforts often
focus on strategies that would be essentially transparent to the
economy. They would allocate the costs in a way that makes them
practically invisible and that would result in the broadest possible
payment base.
The electronics industry was not adamantly opposed to the legislation
that became the Decoder Act. What they were being called upon to do
was simple. There were no major design implications that would affect
the reactions of the general consumer to their products. Then, as now,
strong opposition of major industry players is likely to signal the
death knell for any accessibility mandates in the technology area.
Another important point here is that the mandates (e.g., ADA) fell as
heavily on the government as they did upon the private sector.
Advocates have not had to fight the allegation that it places burdens
on the private sector that government did not have to bear. Absent
from the anti-ADA backlash has been the contention that the law
imposes mandates on the private sector that government chooses not to
impose upon itself.
The loudest cries of protest against the ADA as an "unfunded mandate"
now come from local government officials who are angry about the
allegedly high costs of curb-cuts, paratransit and other required
measures. Ironically, the widespread hostility toward government in
contemporary society may have resulted in these protests receiving
less sympathy than would otherwise have been the case. When local
officials, and increasingly when school systems who oppose the
Individuals with Disabilities Education Act (IDEA), draw a linkage
between their problems and higher taxes or reduced services, their
complaints take on much more serious implications.
OTHER ADVOCACY EFFORTS
Other precedents for advocacy are worth noting, some because they have
been successful, others because we can learn through their failure.
Therefore, attention must be paid to the programs and service systems
that have been the chief sources of public-sector funding for AT.
These sources are vocational rehabilitation (VR), special education
and Medicaid. Though all are major sources of AT funding, none has
come close to reaching its full potential. However, it is worth
assessing how and why advocacy efforts have improved or failed to
improve AT access under these programs. Such an analysis will prove
useful, whatever new forms these programs take.
The fundamental issue surrounding these programs as sources of AT
funding relate to what may be called the structuring and management of
discretion. This means that these programs may provide AT if the state
and local officials decide that they can. When operating rules for
programs are formulated and needs of the program participants are
evaluated, access to AT needs to be established as a benefit of that
program.
CONCLUSION
The past cannot predict the future. The challenges faced by advocates
in the coming years will be unlike any met before. Meeting these
challenges will require strategy, community mobilization, and
expertise in a broad range of subject areas and technologies. History
may reveal that successful systems change efforts display a number of
common elements. However, it will be up to the advocates of our day to
determine how to apply those lessons in their advocacy and work.
The important points to remember are:
choose your issues and forums wisely, from the standpoint of where you
can have the greatest impact and where your particular resources can
be most effectively used;
educate consumers about the importance of the issues; and,
make proposals that hold promise of breaking down barriers in ways
that do not create resentment or equity issues in connection with the
new responsibilities or new costs involved.
If, these goals are kept uppermost in mind, the prospects for
successfully applying yesterday's lessons to today's needs are
excellent.
ATFSCP - 1996
The opinions expressed herein do not necessarily reflect the position
or the policy of the U.S. Department of Education, and no official
endorsement by the U.S. Department of Education of the opinions
expressed herein should be inferred
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