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2
SCIENCE, TECHNOLOGY,
RESEARCH PROGRAMS
AND
THE HANDICAPPED
REPORT
by the
Panel on Research Programs to Aid
The Handicapped
to the
COMMITTEE ON SCIENCE AND TECHNOLOGY
U.S. House of Representatives
Ninety-fourth Congress
Second Session
December 1976
CONTENTS
Subject
Page
Introduction
1
Definitions
6
Approach
7
CHECK-LIST
13
NEED
15
Definition of Need
15
Potential Market
16
SOLUTIONS
19
State of the Art
19
Development of Solutions
21
Basic Research
24
Applied Research
26
Approach Suggestions
27
Prototype Construction & Testing
29
PRODUCTION
31
DISTRIBUTION
33
VOCATIONAL REHABILITATION
38
FUNDING
40
CONCLUSIONS
43
Feasibility of Accomplishment
44
Summary
45
ORGANIZATION CHART
47
FUNCTIONS CHART
51
Recommendations
52
1
INTRODUCTION
How can a Research Program using the best of
science and technology be put to work for the
handicapped? A simple question masking an
enormously involved subject, full of all society's
human complications, ranging from evolution to
engineering to emotion. Getting to the Moon and
Mars is comparatively easy; there are no such
mathematically definable targets for rehabilitation
and the handicapped.
Squaring off with the question, the Panel
promptly set about asking a lot of questions and
listening to a lot of statements from all concerned.
From the point of view of the specified subject
the answers were disappointing. They seemed to
have little relevance and could offer little
help in answering two basic issues upon which any
meaningful reply to the Committee depends:
(1) How many people with what sort of disabilities
are there (so that a program of needs and priorities
can be developed), and (2) What is the present
state of the art in those areas (so the program
can move forward instead of backward)?
Only when the evidence was all in and digested
did it become apparent that there was going to be
no ready answer to the primary question because there
are presently no sound answers to the secondary ones.
If you don't know what you are dealing with how
can you tell what to do?
2
Out of the welter of material there did
appear, however, a surprising fact: in the world
of the handicapped there is no organized plan
(in fact not even a disorganized one) which
considers the subject as a whole. It is fragmented
virtually to the point of stalemate, becomes
gobbled up like all littlest fishes in biggest ponds.
Perhaps this results from the age of the
subject. It has been studied, investigated,
reported on, and even legislated for years.
And each time it has been chopped into smaller
pieces which have been put into defensible little
cubbyholes which gradually lose sight of each
other and often of the whole of which they are part.
There are also other reasons. The handicapped
are a special segment of the population who,
though not much in view, are a source of genuine
concern and sympathy for all and especially for those
in direct contact with them. Usually this occurs
in relatively small numbers and in isolated
circumstances. Consequently each sees the problem
in an isolated way and under the circumstances
of the moment. This does not make for a well-
organized effort but rather a highly intense one,
frequently at timing and priority odds with
others, easily producing spotty results. Addressing
themselves to specific limited objectives they may
gain momentary victories but often with sad long-
run effects. They lead to a kind of constriction
even upon the sort of questions that can be asked
---
such as the one presented to this Panel.
-- 3 --
In a sense this Report is creating itself.
It started out to research a confined objective.
But with research there is never any assurance
what will be uncovered. Often the results are
far more important than the original objective.
When all the collected facts and testimony in
this case are placed in logical order to arrive
at a method of answering the primary question,
they actually result in a program and course
of action which we believe essential to sig-
nificant progress for the handicapped ---
the
fundamental purpose of the whole effort.
The Committee may be troubled by the addi-
tion to scientific research and applied research
of market research, production and distribution
research, product improvement research, economic
research --- yet all are proving themselves
indispensible to that fundamental purpose.
It is noted with interest that in its
SPECIAL OVERSIGHT REVIEW OF AGRICULTURAL RESEARCH
AND DEVELOPMENT, the Subcommittee of Science,
Research and Technology in their Report of
August, 1976, took a broad view of research,
defining it to include the entire range from
(1)
basic discovery of knowledge to consumer protection.
This Panel's Report takes a similar broad
view.
(1)
DEFINING AGRICULTURAL RESEARCH
The Assistant Secretary of Agriculture,
Mr. Robert W. Long, appeared as one of the first witnesses
in these hearings, and defined the scope of agricultural
research for the Subcommittees:
4
(Footnote (1) continued)
Agricultural research deals with the discovery,
combination, and synthesis of knowledge essential to the
continuing efficient production and marketing and the
effective use of food, fiber, forest resources, clothing,
and shelter under changing economic, social, and political
conditions in the United States and the world; it deals
with the protection of producers and consumers and with the
wise use of natural resources; it involves the elucidation
of a broad spectrum of public policy alternatives and
consequences for people on and off the farms; and it includes
research designed to add to basic knowledge that will
advance these aims (I:p.41).
He went on to state that scientists of many discipli-
nary backgounds including physical, biological, economic,
social and political, would be involved in the agricultural
research process.
The Subcommittees intended the hearings to focus
on the food-related aspects of the agricultural research
system. Chairman Symington explained this in his opening
remarks at the second set of hearings and defined the elements
he considered to be part of agricultural research:
It is our preliminary view that agricultural
research should be directed both toward: securing an
abundant supply of high quality, inexpensive and nutritious
food for the citizens of this country and for the rest of
the world, and achieving the general improvement of the
quality of rural and urban life.
Agricultural research is involved in all aspects
of production processing, packaging, transportation,
storage, and distribution. Between the appropriation or
allocation of funds for agricultural research and the
achievement of its goals are dozens of institutions within
which scientists are engaged in basic research, applied
research, technological development, and the extension
of results.
5
One other factor should be mentioned in this
introduction. In dealing with the handicapped
one must constantly remind one's self how compara-
tively fragile they are, physically, emotionally,
sometimes both. Their personal ecology is in
very delicate balance. Many are in constant
discomfort if not pain. Even the hardiest are
deeply sensitive to the seeming inequities of
their fate. And they have long lonely hours to
ponder and compare them.
Such a little thing as a curbstone or a
door knob can be insurmountable. Merely getting
up or going to bed can take hours. They see things
in a very special order of magnitude which must be
understood and respected in any effort to lighten
their load.
Taken out of context their problems easily
appear irrational and inconsequential, quickly
get miscast
----
the fate of too many past legis-
lative efforts in their behalf. The normal form
for this Report would be just such an out-of-context
presentation --- inverting the order of things to
put conclusions first and facts last, in their case
producing all sorts and combinations of right and
wrong results and reasons.
To avoid this hazard the Panel is first
presenting a concise statement of the facts as
they revealed themselves so the Committee may be
in position promptly to evaluate the recommendations.
6
Let us start with a few definitions.
For the purpose of this opinion the term
"HANDICAPPED" is limited to persons
with physical, mental and/or emotional problems
which daily render their lives unusually difficult.
"SCIENCE" means a combination of past,
present and future knowledge of natural laws.
"TECHNOLOGY" represents the totality
of the means employed to provide the necessities
of human sustenance and comfort. (Webster)
7
APPROACH:
A handicap is a very personal affair.
Therefore it is logical to approach the subject
on an individual basis.
In spite of his disabilities the
handicapped person is first and foremost an
individual anxious to ----- and to a large extent
compelled to --- adapt his life to that of the
world of individuals around him.
He is not living in a world all his
own (apart, perhaps, but not alone) but one
occupied by a vast majority of people handicapped
in other ways. His needs in relation to science
and technology can (and should be) expressed by
the same diagram that is applicable to all other
individuals
THE INDIVIDUAL WHEEL
By understanding the laws of nature (science)
and organizing them according to his needs
(technology), the individual rolls more or less
smoothly through life.
TECH
A
&
DETERMINATION
OF
PRODUCT
NEED
DISTRIBUTION
IND
DUAL
2
DEVELOPMENT
Us
OF
ITEM
SOLUTION
PRODUCTION
There are four spokes in the basic wheel.
9 -
THE SOCIAL WHEEL
CUSTOMER Bag CUSTOMER EDUCATION SERVICE REASIBILITY MODERN DEFINITION MEED
/ INARKET PRICE
OF THE ART
RETAILING
DEVELOP SOLUTION
$0.0
BUILD PROTOTYPE
RODN MODEL TEST
and DESIGN
When the individual becomes part of a modern
society the spokes become more refined.
10
THE ECONOMIC WHEEL
M
4
EDIUM
SA
OF
the
LL,
G
M
TECH,
CHANGE
CHE
AW
TECHI
G
CHAN
ONE
M.O.
a
E
is
0
OF
MEDIUM
4
As a least common denominator of exchange of
effort, money provides cohesion
-------------------------
makes it
possible tp combine and adjust the many elements
of modern society and science and technology.
11
From the most primitive beginnings to its
present sophisticated level the preceeding has
been "The Technological System".
It is pracitical, logical ---- virtually
immutable.
Establishments may change the words and the
emphasis but not the system.
When we don't follow the
rules
-----
leave out or
maladjust a spoke of two
i
the wheel collapses or at
least the ride gets rough,
we travel the hard way until
we make repairs.
NOTE
The foregoing basic logistic
facts are presented merely
to provide a solid operating
foundation upon which to
construct a program for the
handicapped.
Without such a base this
sensitive subject flounders
around in a welter of
confusing, emotional,
fruitless chaos.
- 12 -
Now let us see how the System can be made to
work for the benefit of the handicapped.
13. HANDICAP PROJECT $ EVALUATION CHART-
14
TITLE
PROJECT No
DATE
CATEGORY
Converting the wheel into a
I
NEED
ALLOCATED
SOURCE
EST.
tabulated chart it becomes an
T
SEE COMMENT
EST.
TO
OF
(os
TIME
evaluation CHECK-LIST. It
A
FUNDS
provides a uniform frame of
its
M
reference wherein all the
elements of each proposed
do
project may be compared with
1
their beneficial and financial
Z
consequences. Without some
POTENTIAL
DOMESTIC
2
such standardized system no
MARKET
FOREIGN
3
yardstick can be applied and
no intelligent selection
DESIRED LIST PRICE
4
accomplished.
STATE OF THE ART
LA
SOLUTION
SOLUTION
BASIC
6
RESEARCH
The success or failure of an undertaking depends
DEVELOPMENT
APPLIED
7
upon its basic validity, its organization, its
CONSTRUCTION
8
PROTOTYPE
financing, and the people who execute it. In
TESTING
9
this case, there is no doubt about its validity.
PRODUCTION DESIGN $ MODEL
10
Its organization is another matter.
PRODUCTION MODEL TESTING
11
It was logical that during the Panel's
PRODUCTION
TOOLING & SET-UP
12
hearings, visits to rehabilitation centers, and
studies of past reports, every item on the
QUANTITY CONTRACTED FOR
13
MANUFAC-
TURING
CHECK-LIST was repeatedly considered --- they are
UNIT COST PER, CONTRACT
14
all part of the basic technological system.
TOTAL COST PER, CONTRACT
15
But each appeared under so many guises that
WHOLESALING
16
citing them individually would be as chaotic and
17
DISTRIBUTION
RETAILING
repetitious as the times and ways in which they
CUSTOMER
EDUCATION
INSTRUCTIONS $ MANUALS
18
appeared. Instead all the fundamental facts,
PUBLIC RELATIONS (MEDIA).
19
evidence and data have been organized into the
logical order of the CHECK-LIST and are presented
CUSTOMER
SERVICE
SERVICE MANUALS
20
in that sequence.
SERVICE FACILITIES
21
EST. TOTAL COST
22
LIKELY LIST PRICE
23
CONCLUSIONS
EST. TOTAL TIME
24
FEASIBILITY OF ACCOMPLISHMENT
25
SUMMARY
26
RECOMMENDATIONS
27
15
Item 1.
NEED
DEFINITION OF NEED
Since a handicapped individual is one with
"physical, mental and/or emotional problems which
daily render his life unusually difficult", the
combinations and permutations of his needs are
virtually infinite.
A broad definition would include everything
tailored to make his life less difficult --- a
statement ranging from pure gadgetry to subjects
so abstruse as to be barely definable.
A specific NEED is the starting point of
the whole process. But there are many needs, all
competing for attention and support, all requiring
comparative evaluation. Each is only the first
spoke in the wheel, useless without the last.
Following the Check-List we install them all ---
and can then stand back and make intelligent
comparisons.
16
Items 2 & 3 NEED continued
POTENTIAL MARKET
Most seem to agree that a basic tenet of
a mass society is "the greatest amount of happiness
for the greatest number of people". (Unfortunately
not as many agree how to achieve it.)
This automatically generates a "market survey" ---
preferably an accurate means for determining the
opinions, needs and desires of the greatest (and
less great) numbers of people. This is as important
to a product as it is to a legislator.
It is one of the most difficult and pressing
subjects in the rehabilitation complex and repeatedly
came up during the Panel's hearings. How many
handicapped persons are there and with what kinds
and degrees of handicaps? Ready-answer figures
presently range from 15,000,000 to 50,000,000 which
makes them meaningless.
On the basis of such data no reasonable
person, corporation ---- or government ---- would
(or should) invest. NASA's efforts to cooperate
with industry for benefit of the handicapped have
mostly been defeated by this one problem.
There is need on a nationwide scale for a
census organized on lines similar to the Veterans
Administration's "Catalog Of Disabilities" wherein
each handicapped person can find his capabilities
enumerated (in the V.A.'s case for compensation
17
purposes but in the private sector it could be,
among others, for market survey purposes).
Few major production benefits to the handi-
capped are going to be achieved until such census
(2)
statistics are available.
FOREIGN MARKETS
The relatively good health
of this nation probably means that its handicap
needs are minimal compared to the rest of the
world. If foreign markets could be integrated
with our own it would considerably reduce unit
prices for all concerned and produce as many foreign
as domestic advantages.
The elimination of foreign and domestic
trade barriers relating to import and export of
assistive devices would provide an important
stimulus for both markets.
(2)
In developing such data care must be taken to achieve
maximum accuracy lest the figures become suspect and
worthless.
The subject of the elderly and their "loneliness"
frequently came before the Panel as though there was a
legislative obligation to cope with it. It was expressed
in terms of "lack of motivation" and "hospitals being
dehumanizing" and "shut-ins being forgotten".
No doubt all these are true but old age is a late
hour to start infusing motivation --- that should have been
done in school. Is not loneliness "looking in the mirror
and seeing no one there"? It is the product of a lifetime
and now can be assuaged only by one-to-one acts of kindness,
not by all the combined science and/or legislation in the world.
This age-old loneliness problem of old age is not the
kind of handicap a census will ever cure nor one that should
be added to the list.
18
Item 4. NEED continued
DESIRED LIST PRICE
This item is directly related to the market
survey. It represents what the market feels
it is willing and able to pay for the product ----
an important question from the outset.
Whether or not it can be achieved is fre-
quently apparent from the start and has an immediate
effect upon how, if at all, to proceed with the
project.
19
Item 5.
SOLUTIONS
STATE OF THE ART
Especially in the field of rehabilitation
and the handicapped, embarking on a new project,
be it hard or software, without first investigating
the state of the art is as much folly as starting
without a market survey.
A list of the number of projects in this
field (both current and completed) would be many
hundred times the length of this Report. While
not specifically addressed to Science and Technology,
both are inextricably present on a vast scale ---
so vast indeed that few persons, if any have a
grasp of them all.
Science and Technology include virtually
every facet of life and its occupations. The high
rate of modern progress is largely a result of
efficient interfacing of the two. To accomplish
this for the handicapped is the task placed before
this Panel. But one of the best modern tools
for doing it ---- the data-bank ----- is missing.
Many industries and professions have created
extensive computerized data-banks which are price-
less tools in the creative process. Unfortunately
none seems to zero-in on matters relating to the
handicapped.
20
There are more than 100 Government agencies
which deal with problems of the handicapped.
Each issues reports of its activities and findings
which add to the mountain of unrelated date.
There are approximately 1,000 private organi-
zations and institutions engaged in work with
and/or relating to the handicapped. Their experience
and knowledge is enormous but again lies buried
in the mountain.
There is no computing the loss of experience
and waste by duplication. At best the right
hand hath only a shaking acquaintance with the left.
There is urgent need for an organization to
act as a clearing house of information and as
such hopefully stimulate coordination of effort
(3)
in the entire field.
The creation of a computerized data-bank for
problems of the handicapped along with the well
defined census, should be among its first preoccupations.
(4)
(3) While efforts to coordinate the work certainly
exist, they appear to be among only certain agencies (like
the National Science Foundation and The Rehabilitation
Services Administration) and by no means interlock the vast
web of activities.
(4) This is an area where the handicapped themselves
could take an active part and where their knowledge of their
problems could be integrated into the effort (an oft-repeated
request at the Panel's hearings).
21
Items 6 and 7.
SOLUTIONS
DEVELOPMENT OF SOLUTIONS
Solutions come from a creative combination of
basic and applied research.
The SCIENTIST, doing basic research, tries
to understand (rationalize) what he sees.
The INVENTOR, doing applied research, tries
to see (materialize) what he understands.
The former works on a micro/macrocosmic
scale, the latter on a human scale.
Though they appear to be working to put
each other out of work, each depends upon the other.
By understanding more of what the scientist
sees, the inventor sees more ways to enable the
(5)
scientist to see more.
The important factor is to be sure the policy
makers understand this paradoxical relationship and
apply it in allocating priorities.
Basic research is an area foreign to the
average person. Because it is highly specialized
it has a language all its own ------- and, like all
foreign tongues, is enigmatic therefore distrusted.
(5) Maybe if they work together long enough they will
reach Dr. Zen's state where there is nothing at all to see.
Obviously impossible. legislating matters of this importance is virtually
22
Most frequently its benefits are not directly
apparent; generally the engineering of applied
research and their inculcation into resulting
hardware completely disguises them.
Much of the value of NASA's work is concealed
by just such processes and causes many to question
the validity of trips to the moon
----
which in
themselves are basic research.
This attitude was apparent among many of the
handicapped who testified before the Panel.
They felt there was more need for "implementation"
(applied research) than for basic research.
Their attitude is understandably that they
are already handicapped therefore forget what is
down the road; what are you doing for us now?
One is the long term point of view, the other
the short term
both are valid
and fortunately
the two are not mutually exclusive.
They remind one of the aged but dynamic
mother who tells her also elderly son: "Now
listen to me, son. This is important. Make sure
you die healthy!"
In her maybe unconscious wisdom she is
speaking of preventive medicine, a tremendous
field of basic research. The future, maybe,
but a future with a lot fewer handicapped when it
becomes the present.
There is need for much educational work on
this subject among all segments of the population,
handicapped included. It takes the kind of
23
enlightenment that comes from basic research to
appreciate basic research
----
a slow, bootstrap
process.
Unfortunately in the use of our sophisti-
cated modern language we tend to create tight
little pigeon holes upon which we affix names and
titles as though they were closed to all others.
(We are increasingly doing this by misusing
computers.) The terms Basic Research and Applied
Research, and the titles that go with them, are
in similar danger.
True, these are the areas where the initial
creative action is. But nature does not lock her
scientific facts in boxes and give the know-how
to open them to a privileged few who we might
consider seem best able to decipher them. They
are there for anyone with the wit and will to
"see". Yet few seem given to see them --- and
then in the most unexpected ways. Perhaps it
is like Heraclitus said: "If you do not expect it
you will not find the unexpected for it is hard
to find and difficult to believe."
Out of the most unexpected corners will
come individuals (always individuals, even though
they may work for a thousand bosses or just for
themselves --- this is the basis of patent law},
individuals with the most unexpected solutions
(the "stair-cat" wheelchair for example).
Generally they are gifted with wide-open
minds, imagination, dedication, courage and
incentive which must somehow amalgamate to achieve
the desired goal.
24
Together they represent the spirit of
individual achievement which has made this country.
Like any spirit, it is timid and sensitive. Yet,
when handled properly, it can move the world.
Any legislation bearing on this independent
spirit should be carefully considered for without
its infusion the wheel of progress is turning on
a flat tire.
BASIC RESEARCH
Considered alone the process is extremely
costly and (of all things)
appears extremely
unscientific. It is a process of assembling
----
and trying to understand ------------------------- a constantly moving
microcosmic/macrocosmic jigsaw puzzle.
There is no predicting its timing or exact
results
often they are at wild tangents to
(6)
the original purpose
but they are never
lost and eventually pay tremendous dividends,
for every breakthrough moves closer to eliminating
the fundamental problem.
(6)
The Hyperbaric Chamber and Cerbral Circulation Study
at the Rusk Institute of Rehabilitation Medicine was initiated
primarily to investigate STROKE. The resulting equipment and
techniques will probably find their first use in the field
of drug addiction.
25
At that point, all the stop-gap arrangements,
the special treatments and cares and services and
considerations and expenses which are an integral
part of many presently accepted health and rehabili-
tation techniques become largely redundant --- a
saving not only in the pursuit of happiness but
also in monetary terms astronomically exceeding
(7)
the basic research costs.
There are also pitfalls. The nature of such
research makes it prone to be "conducted in a
vacuum", an exercise highly gratifying and exciting
to its usually solitary practitioner. The excite-
ment lies primarily in solving the mystery at hand.
As soon as this is accomplished, like a once-read
detective story, the researcher hastens in search
of a new thriller, often leaving the old one to
suffocate in the vacuum.
This is why special efforts must be made to
bring the basic research experience, failures as
well as successes, across the border into the
world of applied science.
(7) Consider what now-obsolete polio treatments would
cost today compared to the present vaccine --- and imagine
the same results for prenatal birth defects or spinal
cord repair.
Because of its less obvious qualities basic research
bears the same relationship to the handicapped that applied
research does to the so-called able bodied.
26
APPLIED RESEARCH
This is where the tangeable, visible, usable
results of basic research are adapted to man's
needs and desires.
Many problems of the handicapped are of a
fundamentally logistic nature
---
lack of locomo-
tion, speech, hearing, seeing, etc. Until the
day comes when basic research can magically
recreate them, there is urgent need for substitute
solutions. None will ever equal nature's incredible
gifts but the need is too great to be denied.
It is not unreasonable to feel that creative
applied research presently can offer solutions
not too far behind the scientific state of the art.
Failure of the solutions to reach those in need
is primarily due to lack of research into the
serious problems of manufacturing and marketing
economics.
The same lack of solid information makes it
doubtful that any list of basic and applied research
projects which this Panel could presently submit
would be meaningful. Such a list can be intelli-
gently developed only when all the facts are
available and comparative evaluation becomes
possible.
STRIKE
27
APPROACH SUGGESTIONS
Some problems that appear virtually impossible
to solve could be materially relieved by a
slight change of approach. For example one
frequently hears that public telephones and
elevator control buttons and cafeteria counters
are too high. This is undoubtedly true for present
day wheelchair designs. But rather than change
all the telephones, elevators and counters in
the country which are designed for the average
person it would be a lot easier and more readily
accomplished if the height of the wheelchair seat
could be adjusted with a spring-compensated
lever to counterbalance the occupant's weight.
In the area of PUBLIC TRANSPORTATION two
approach changes might be useful. Start in the
minibus field. Many small cities use van-type
vehicles instead of large coaches. The vans would
be relatively easy to adapt for the disabled
(including wheelchairs) and much less expensive
to experiment with and learn how to integrate into
an urban operation.
The handicapped are understandably impatient
about getting the job accomplished on a grand scale
but putting such busses on the street is only the
tip of the iceberg. It too started with a snowflake.
In the field of PERSONAL TRANSPORTATION (highway),
when enough market statistics are accumulated to
support the cause, find a small enterprise (well
neigh garage) that makes things like dune buggies,
28
preferably one where the owner has a personal or
family disability transportation problem. He will
put together a wonderful concoction of everybody's
parts for a price one wouldn't believe. It's
amazing what the little fellow can do. After all
he built this country and will keep on building
it
----- and he will find a way to manufacture the
vehicles, too.
Leave the "majors" alone. They are in a
different ball park, have totally different
problems --- and believe it, they are problems.
They work in production millions and billions.
Asking them to work in thousands is like trying to
harpoon a whale with a toothpick.
The above are a few examples of where a
change of approach might prove beneficial in the
field of applied science.
29
Items 8 and 9. SOLUT IONS continued
PROTOTYPE CONSTRUCTION AND TESTING
With hardware the effort is incomplete
until a satisfactory prototype is produced and
tested.
It is wise to permit the individual whose
idea is being developed to carry it right through
from inception to production and if possible even
into production.
While he may not be the most qualified person
available in relation to the particular subject,
the fact that it is his idea will help him find
ways over the most incredible barriers which
would completely stop most others for whom the
project only becomes another assignment. (This
relates to previous remarks about the spirit of
accomplishment. The world is full of fine
achievements and useful products which otherwise
would not be.)
Software ideas are generally verbal or
manipulative (techniques) in character and come
full-blown from their creator.
TESTING of prototype hardware is relatively
simple for results are quickly apparent. Tests
can be devised which the equipment either passes
or fails.
Testing software is inversely more difficult.
Results are usually more subtle to detect, standards
more difficult to establish and tests more sensitive
to run.
30
Consumer
The Government has excellent facilities for
conducting both hard-and software tests --- in
Veterans Hospitals, Rehabilitation Research and
Training Centers, and National Health Programs.
The private sector also has excellent test
facilities and a very willing assemblage of testers
who made it clear to the Panel that they feel
neglected when it comes to such programs.
Again, the creator of the idea should be
actively included. In spite of its name, it is
too often forgotten that the whole purpose of a
Test Program is to discover shortcomings --- and
it is a rare program that cannot claim this accom-
plishment, but not too rare a one that is not
distressed by the resulting confusion of time
schedules and travel-and-per-diem-funds and the
cussedness of inanimate objects and is ready to
throw the whole thing over.
Left to the testers alone, the product has
proven itself unsatisfactory and the project is
"down". Perhaps. But to its creator it is not
"out". This is where his talents rise to the
challenge. He may have to go all the way back to
the drawing board but no mountain will be unturned.
It's his baby and when a man has a baby anything
is possible.
31
Items 10 through 15. PRODUCTION
Especially (but not only) among the handicapped
there seem to be two popular misconceptions relating
to new products:
(1) that once R & D is completed the product is
ready to market, and
(2) that often at this point manufacturers refuse
to cooperate because they can see no profit.
Both misconceptions are based on half truths.
When the R & D is complete, all the way through prototype
testing, the road to market is not half travelled. Ahead
still lie the formidable undertakings of production
design and model building, production model testing, and
production tooling before the production line even
begins to roll.
And this time the test program is usually more exten-
sive than the prototype testing ---- again an area where
Government facilities are widely available, ready and
willing and where the manufacturer, the original creator
(8)
and the consumer should be permitted to take an active part.
And when at last the production line is ready to roll
there has to be a ready answer to how long and how many --
in fact the answer should start developing way back in the
"need" stage and should become increasingly refined as the
project advances.
(8)
It is even more crutial than at the prototype test stage
to include the originator of the project in the production model
tests. This is particularly true where delicate processes and
techniques are concerned.
Production engineers and executives and technique practi-
tioners often feel that "inventors" are impractical when it comes
to large scale operations. Usually not knowing the background of
trials and failures that the inventor went through, they not in-
frequently make changes which produce results they themselves
do not comprehend and tend to blame on the idea and its originator.
Many a good cause has been lost at this expensive point where
inventor and producer alike must practice special cons traint not
to let the human element ruin the job. It happens too often.
32
Of course no manufacturer is (or can long afford
to be) enthusiastic about manufacturing a product on
(9)
which he goes broke.
Even a wealthy government
has its limitations. But under the heading of
"public interest" a government can do many things
a private enterprise cannot afford.
It can for example place a bulk order which
makes it economically feasible to manufacture a
sufficient quantity of an item to bring the price
within the means of a sufficient number of customers
to balance the budget.
In this sort of transaction the government
would essentially operate as a no-interest banker.
The Small Business Administration has been suggested
as a vehicle for such operations and the potential
should be investigated. This is a fundamental
economic problem in the handicapped community and
its solution would represent a great step forward
for those who cannot take it by themselves.
(9)
Establishing and enforcing government standards for
products for the handicapped not infrequently arises.
While there may be instances where it would benefit,
there is little doubt it would constrain development, increase
prices, and add government costs for enforcement.
In the field of prosthetic and orthotic devices, where
the Veterans Administration is very active, they have
observed that the industry has established its own quality
standards and has done a good job of maintaining them.
If the problem ever becomes a serious one, use of
Underwriters Laboratories might be a better way to go.
Considering all the disincentives presently lying in
the way of attracting manufacturers into the field, such
an action would be of dubious value.
33
Items 16 through 21. D ISTRIBUTION
That distribution represents half the price
of the average product demonstrates its importance
and its scope. It is the crutial point at which a
product and its user interface. It is the final
segment in the technological wheel.
It is also an area of vast disappointment for
the handicapped and of serious neglect by those
who plan for them. It catches the brunt of the
lack of organized, imaginative endeavor which
starts all the way back with the missing market
surveys.
Distribution (known as "deliverability" in
the handicapped community) involves much more than
merely packaging, transporting, and ringing the
cash register. It encompasses the complicated
subject of public education, of simple instruc-
tions and complicated user manuals, and public
relations via the media which encourages competition.
It also includes service manuals for hardware and
service facilities to provide repairs and replacement.
Devices and systems for the handicapped
generally provide only an improvement in their
condition, never a total cure ------ consequently
they are never entirely satisfactory. Distribution
has to cope with the resulting complicated job of
human relations --- especially among the usually
sensitive handicapped who are especially in need
of assistive services.
34
The use of such devices frequently requires
special training which in turn comes from specially
trained people. Manufacturers and distributors
generally attempt to provide such training with
their products. Not always successfully. It is
no easier to find good help in this field than
any other, perhaps harder. Such service takes
time for which either the manufacturer/distributor
must pay (or increase the price) or the salesman
must contribute his time (taking it away from
other sales). There is no easy solution to this
issue nor to that of ongoing assistance to the
handicapped. This really calls for devotion.
In this day and age it is difficult to get
a good servant at any price, and then government
inflicted 8-hour days and 40-hour weeks aggrevate
the issue still further. People prefer to work in
factories and, when there is no work there, just
collect unemployment. How many at that point go
out to help the handicapped? It is a sad commentary
on mankind's nature that what seems like such a
good idea (unemployment compensation) gets misused
on such a vast scale.
It has been suggested that the more disabled
could be cared for by the less disadvantaged
---
revitalized alcoholics or drug addicts or prisoners.
Students of the social sciences would find it
good training. But all such sources are difficult
to mobilize, depend upon, and perpetuate.
It calls for the kind of devotion which "man's
best friend" seems uniquely enthusiastic about giving.
35
Surely he could be trained to serve in a lot
more ways than he now does. He could pull
wheelchairs, open and close doors, turn lights on
and off, put out the trash, etc., etc., plus
being a good companion and guardian. (Saw just
a homebody pet the other day who would fetch
beer from the refrigerator and "play" the piano
upon request.) This concept deserves further
development.
SERVICE for mechanical assistive devices is
an area in need of imaginative effort. Service
organizations abound in every city and are spread
far and wide across the country. They repair
everything from refrigerators to television
sets and provide home service. They could be
trained to handle anything from wheelchairs to
electric beds.
Manufacturers should be encouraged to utilize
such facilities. The handicapped themselves through
their own organizations could also generate a
nation-wide Association to which such service shops
could belong and acquire business as well as good will.
The handicapped could run it themselves through
such a simple expedient as a telephone answering
service. Funnelling all the service calls through
one channel would give them the sort of customer
clout they now lack.
(This is an activity which could be triggered
by a lively P/R program, certificate-of-award
incentives, local news releases involving the
36
service organizations and town officials
a
(10)
little ceremony making the awards)
Distribution (known as "deliverability" in
the handicapped community), for all its technical
faults and shortcomings in the eyes of the
disabled, is still an area which they should not
deal with too harshly. It is the marketplace where
the smart manufacturer goes to discover the need.
He listens hard, he counts heads and he goes home
with his market survey and feeds it into his personal
computer which is as "human" as anyone else's.
(We are almost back where we started.)
It is said that in the market place every
customer is a king. It is his chance to say what
he wants
and if his demands are reasonable
and sensible and nicely put he has a good chance
of having them filled. But sometimes even a king
gets his head cut off when he wants too much,
is never satisfied (admittedly a very difficult
condition for one with a handicap to attain).
This particular market place is one for
soft voices and gentle words from both sides.
(10)
Judging from testimony before the Panel, it appears
a good deal more could be accomplished in the field of public
education relating to the handicapped.
Most of the effort seems to be among the handicapped
talking to each other. This is prone to result in antagonism
against the unhandicapped and alienates the two. (This is
certainly true when it comes to the handicapped and the
business community.)
To a large extent the handicapped feel outcast from the
system, mostly a result of their not understanding the system
and asking it to work in ways that it cannot handle (any more
than they can handle certain of their own problems).
37
Some good and important P/R work could be accomplished
in helping them learn these basic technological facts --
which the general public also little understands but has less
need to know.
The same general public could profitably be taught that
one of the primary purposes of education is to help the weak
to be strong and the strong to be gentle.
Architectural barriers are a very hot subject and has
made good headway among city planners and architects. However
it is overlooked that we live in "The Age of the Great American
Contractor" who designs his houses on the kitchen table using
local building suppliers' catalogs.
Few have ever gotten the handicapped's word. (They
would probably be among the first to heed them for frequently
they are primarily salesmen and then builders.) The same
thing goes for plumbers and electricians and bathtub builders
and toilet and washing machine makers. (Make everything
position-control and touch-identifiable. There's lots of
room for P/R work there).
Public relations can include a lot more than press
releases. It is a fertile field for imagination, can include
competitions for the best solutions to handicapped problems
in all areas, prizes and benefits, designs, games, stories,
thoughts, mental stimulation for those with physical impedi-
ments.
With little or no modification to the present system of
educational grants, the Government could contribute materially
to the success of such a public relations program. It could
generate accredited courses on the subject in universities,
have them included in correspondence courses for the home-
bound, and provide special teacher guidance as part of the
educational process.
Public relations is an area in which many of the
handicapped themselves could excel. So far as present
results are concerned one might get the erroneous impression
that they are incapable of expressing themselves.
38
VOCATIONAL REHABILITATION
In addition to evaluating hardware projects
the Check-List can also be applied to software
which includes a big segment of the rehabilitation
world. Psychologically the handicapped individual
is apt to be on a wavelength all his own. Often
his mental and emotional tuning need some special
adjusting which in turn require special training
for the tuner.
There are many fine and dedicated organizations
working in this area. They train aids, nurses,
therapists, medical students, the handicapped
themselves and their families. During hearings
it was frequently stated that there is a lot of
need for training doctors who seem to know little
about special needs of the handicapped and
available assistive devices which they fail to
prescribe.
Especially for the newly disabled trained
specialists are invaluable in rebuilding lost
confidence, new hope, motivation, a desire to
reenter the world with all its frightening ways.
The vast number of natural and unnatural
disincentives are also their area. A disabled
person is often financially better off being paid
by the Government to stay home and do nothing than
getting a job which costs him not only a lot for
transportation plus a helper, but also the stipend ---
a degrading situation.
39
There is need for policy change to provide
financial aid during a transition period until
take-home pay at least equals what can be gotten
for doing nothing. Those with the will and courage
for self-help deserve all the additional help they
can get.
Self esteem is one of man's most fundamental
and fragile requirements. Its loss can be as
traumatic as the loss of any physical function.
Most who suffer the latter also fall prey to the
former. Both research and applied efforts in this
field should be given the same sort of encourage-
ment, consideration of need, evaluation, and
support as is given their physical counterparts.
41
carry some of the financial burden? Could it not
be considered a form of insurance? All of us are
subject to accidents. Few of us will "die healthy".
These issues are at rock bottom of the whole
subject of the handicapped. In fact they are so
much at the bottom that they become exceedingly
troublesome when they occasionally emerge. Yet
their continued submersion is perhaps the principal
cause of so few tangible results from the 21.5
(11)
billions dollars spent annually for the handicapped.
One is reminded of Einsteins reply when asked why
man has made such great progress with scientific
problems and so little with social ones. He
immediately pointed out that the latter are infinitely
more difficult.
We have already seen that finding scientific
solutions for the handicapped is not the only
difficulty. It lies also in getting those solutions
into their lives. That is far more difficult than
it seems for it surfaces that rock bottom problem.
It is relatively easy to get a handle on
purely scientific R & D. It is a neat package.
It can be described in erudite terms that few can
challenge because few understand them. Its failures
are not much talked about and its successes are to
the glory of all mankind.
It is in the public
domain. An orderly contract can be devised to set
it all in motion and audit its progress. It requires
(11)
According to HEW's "Executive Summary of the
Comprehensive Needs Study", 10 June, 1975, page 22.
42
little or no plumbing the depths of human equations,
of freedom of enterprise concepts, of the wisdom
of Solomon.
But getting a handle on manufacturing,
distributing, market surveying, customer servicing,
these are all hoses of another tail that easily
gets caught in a lot of painful philosophic barbwire.
There is no glory here like taking that first
big step for mankind or eliminating polio. There
is only the nitty-gritty of day to day business
competition to be balanced against how far to go
"in the public interest".
This is the toughest
research problem of
all
---
how legislatively
to inject funds into
this area without disturbing the free enterprise
system and simultaneously encouraging the ever-ready
rip-off artist. To continue dodging the issue is
an enormously expensive way to concede futility.
The answer is not to be found in the kind of
superficial look this Panel can confer. It can
only be pointed out as a research project of the
utmost importance in solving the problems of the
handicapped. It virtually becomes a "need" in its
own right, requiring an organizational entity that
can draw this highly fragmented issue into a broad
and successful cooperative operation. Its solution
probably will involve Government pump-priming
(possibly through the Small Business Administration),
private industry (as much as possible involving the
handicapped to help themselves), and non-profit
organizations (charities and foundations) to coordinate
the effort and account for the results.
43
Items 22 through 24. CONCLUSIONS
PRELIMINARY TOTAL ESTIMATES
No matter what form of cooperative éffort
may finally be evolved, the Check-List's funding
column will be needed for both evaluation and
operational purposes.
Different phases of a project may be funded
by different sources. Breakdown figures of the
individual phases help achieve a more valid
Estimated Total Cost and Likely List Price.
It now becomes possible financially to
compare the original Desired List Price with
the newly developed Likely List Price and
determine whether the project has a chance of
standing on its own economic feet.
44
Item 25.C O NCLUSIONS continued
FEASIBILITY OF ACCOMPLISHMENT
***
With all the preceeding facts a project's
overall Feasibility of Accomplishment can be
considered. This is a strategic psychological issue.
Pie in the sky is a special temptation where
suffering is involved. Since hope does not spring
eternal it is usually better to keep it alive with
realism than to shatter it with unrealistic,
unfullfillable promises.
It is natural to strive for the ideal.
It is more difficult to settle for what is less,
but achievable. Every project's chances of success
should be realisticaly evaluated. Has its time
come? Is the likelihood of success commensurate
with the effort required or would it be better
invested elsewhere?
Pouring in vast sums of money when the
time is not right is no more effective than Omar's
tears. Just as there is a coefficient of friction
with materials, there is a coefficient of time
with learning and problem solving. Adding money
may shorten the interval but nowhere near propor-
tionally to the added funds. Scientific knowledge
is often learned by osmosis.
45
Item 26.CONCLUSIONS_continued
SUMMARY
*******
This Report is essentially a telling of it
as it is. It is of course possible for this Panel
to assemble a list of impressive scientific projects
for learned pursuit but that would simply be mis-
leading itself and the Committee.
Impressive though it might appear, there would
be no sound basis for comparative evaluations, no
legitimate chance of it being executed, and
questionable possibility of anything effective
reaching the handicapped. The subject is so
diffused, so widespread, and present efforts to
cope with it are so fragmented that effective
results are difficult to achieve.
The cure is almost a bootstrap situation.
It needs the facts to pull it out but it needs
organization to get the facts. To produce an
effective program which does for the handicapped
what all want it to do requires a cooperative
effort which transcends the confining boundaries of
public and private sectors, brings them together
with an integrated program to achieve their already
common goal.
But a focal point has to be provided for such
a cooperative effort. Since it is an endeavor in
the national interest it seems appropriate that it
should be triggered by national legislative
action. This will no doubt require crossing
legislative boundaries.
46
In the thirty working days that the members
of this Panel were requested to devote to the
Committee's question it is not possible to develop
detailed structure for such a "focal point"
organization. However, its salient features can
readily be found in the myriad recommendations
which were presented to the Panel and in those which
the Panel members themselves added to this Report.
It would take pages to describe them. Many of
them were frequently repeated.
Much like with this Report, simply listing
them has created the accompanying FUNCTIONS CHART
(page 51) which itself eloquently speaks for the
need to funnel the endeavor into one focal point.
Collectively they represent the integrated job
that needs to be done. Almost more eloquently
they also tell why it is not now getting done.
Operationally every box in the FUNCTIONS CHART
would supply projects to be analyzed in a CHECK-LIST
(similar to the one serving as framework for this
Report) or would provide data to be used in the
comparative evaluation of other projects.
Visualized as a quasi-Governmental office,
its ORGANIZATION CHART would take the general
form shown on page 47.
All Government Agencies dealing with problems
relating to the handicapped would automatically be
"Regular Members". Any and all similarly occupied
organizations in the private sector would be
eligible to be "Associate Members". From each
ORGANIZATION CHART (TYPICAL ONLY)
COMMITTEE ON SCIENCE & TECHNOLOGY
REGULAR MEMBERS
ASSOCIATE MEMBERS
ALL GOVERNMENT AGENCIES
PRIVATE SECTOR ORGANIZATIONS
DEALING WITH PROBLEMS
DEALING WITH PROBLEMS
RELATING TO THE HANDICAPPED
RELATING TO THE HANDICAPPED
NATIONAL ORGANIZATION FOR REHABILITATION $ THE HANDICAPPED
PRESIDENT (ROTATES ANNUALLY)
DIRECTOR (PERMANENT)
ADVISORY 0
A
R
HEW
VA
NSF
DOT
SBA
NIH
HUD
NASA
UNIV
REHAB
LABS
MEDIA
LABOR
INDS'T
MARK'T
FOUND'S
MANAGEMENT
FUNDING
DEVELOPMENT
PRODUCTION
DISTRIBUTION
VOCATIONAL
48
group an active Advisory Board would be drawn. The
Boards would work individually and collectively.
They would aid and advise a permanent Director
while an annually rotated President (from one of
the Regular Member organizations) would provide
legislative liason.
A Department Executive would head up each of
the tentatively six areas of operation. They would
be assigned on a relatively permanent basis (depending
upon their suitability and circumstances) from
the most involved Regular Member Agencies and
from Associate Member organizations, foundations
and/or corporations that actively employ and are
interested in problems of the handicapped. They
would remain in the pay of their parent organization
but their expenses would be defrayed by the
National Organization.
Other staff members would as much as possible
be recruited and remunerated in the same manner.
Initially the entire organization is not visualized
as requiring more than thirty people, most of whom
would be "on assignment". Wherever their talents
and capabilities are commensurate, handicapped
persons should fill these jobs.
The organization should be kept small. Offices
for Director, staff, conferences and library could
be located in a member facility. It would not be
a new agency but rather a composite of already
active ones brought together and working together
in their common cause. They would still have
available to them the facilities, capabilities and
cooperation of their parent organizations.
49
It is not intended at this point that the
organization will do any contracting in its own
right. It will operate primarily as a focal point
into which all may funnel their knowledge through
a data-bank which in turn will disseminated it
to all the others, a focal point for clearing their
programs to avoid duplication, a central location
where all may pool and exchange their experiences,
cross-fertilize their ideas and stimulate construc-
tive action.
(The data-bank should be set up to interface
with existing medical and engineering banks. It
should search out and include all past and present
efforts in all relevant areas. It should generate
and include a well-organized and guided census
conducted by existing channels established for
such work. This is a mandatory exercise of primary
importance.)
It should serve in an advisory capacity to
those seeking and providing funding in both the
Government and private sectors, and assist in
bringing the two together. After its establish-
ment and its having sufficient time to study the
issue, upon its recommendation the Congress may
consider establishing a special "Handicap Fund" to
provide "pump-priming" monies for specific
purposes.
It will especially address itself to the
study and evaluation of NEEDS of the handicapped
and will encourage the maximum effort to fulfill them.
50
It will welcome foreign participation and
provide foreign governments and organizations with
the same sort of guidance that it furnishes
domestically.
In other words, it will perform in at least
all the areas set forth in the FUNCTIONS CHART.
Only from the fruits of such an organization
can one expect to get a meaningful answer to the
question "How can modern science and technology
best aid the handicapped?"
FUNCTIONS CHART
NATIONAL ORGANIZATION FOR, REHABILITATION $ THE HANDICAPPED
MANAGEMENT
COST ANALYSIS
& FUNDING
DEVELOPMENT
PRODUCTION
DISTRIBUTION
VOCATIONAL
RESEARCH, BASIC & APPLIED
DATA- BANK
SUSTAINED
DISTRIBUTING
TRAINING
RESEARCH
LIASON FOR
CENSUS
CUSTOMER
FUNDING
CUSTOMER
ALL ITEMS
PARTICIPATION
T
REHABILITATION
PARTICIPATION
STATE OF THE ART
PUBLIC FUNDS
PROTOTYPE
E
SALES ADVISORY
PRACTITIONERS
ASSISTIVE DEVICES
CONSTRUCTION
MANUFACTURING
SERVICE
5
LIASON FOR
DOCTORS
PRIVATE FUNDS
LIBRARY
ENVIRONMENTAL
ALL ITEMS
MAINTENANCE. $
T
MEDICAL STUDENTS
REPAIR SERVICE
COMBINED SOURCES
ARCHITECTURAL
MARKET RESEARCH
1
INDUSTRY
AIDS
PUBLIC
ENCOURAGEMENT
NEW PRODUCT
LOANS
PRIVATE
Z
LIASON
FEEDBACK
TRAINING CENTERS
NEEDS EVALUATION
LIASON
TRANSPORTATION
4
PROJECT PROJECTIONS
CONTRACT ADVISORY
CUSTOMER
CLEARING HOUSE
EDUCATION
SHELTERED WORK-
PUBLIC
SERVICE
SHOP LIASON
PROJECT MONITORING
PRIVATE-
PRODUCTION DESIGN
HOME JOBS
DATA DISSEMINATING
PERSONAL
STANDARDS
VOCATIONAL
NATIONAL PROGRAMS
COMMUNICATION
COUNSELLOR LIASON
ORGANIZATIONAL
LIASON)
SIGNS
INDUSTRY INCENTIVES
GOVT AGENCIES
RADIO TV
3
FED. STATE&LOCAL
CHARITIES
INDIVIDUAL
PERSONAL
INCENTIVE CENTER
FOUNDATIONS
SENSORY
is
SIGHT
ELIMINATION OF
CIVIC ORGANIZATIONS
JOB DISINCENTIVES
HEARING
LABOR UNIONS
SPEECH
SPECIAL PROJECTS
INDUSTRY
MOTOR
REHAB $ HANDICAP'D
PROSTHETICS
ORTHOTICS
INTERNATIONAL OPN'S
EMOTIONAL
PUBLIC RELATIONS
BEHAVORIAL
EACH SUBJECT REPRESENTS ONE
OR, MORE RECOMMENDATIONS FROM
SOCIAL
THE HEARINGS OR PANEL MEMBERS
VOCATIONAL
RECREATIONAL
EDUCATIONAL
SPECIAL PROJECTS
52
Item 27.
RECOMMENDATIONS
Recommendation No. 1
AN ENTITY WITH HIGH VISIBILITY AND CREDIBILITY
ADEQUATELY FUNDED AND STAFFED MUST BE ESTABLISHED
TO CARRY OUT ON-GOING ASSESSMENT OF NEEDS,
PLANNING AND EVALUATION OF THE PERFORMANCE OF
A NATIONAL EFFORT TO BRING SCIENCE AND
TECHNOLOGY TO BENEFIT THE HANDICAPPED.
Rationale
The body of this Report. (See Introduction, pg.
Recommendation No. 2
EMPOWER AND REQUIRE IT TO PERFORM THE TASKS
SET FORTH IN THE "FUNCTIONS CHART" MADE PART
OF THIS REPORT.
Rationale
Again the body of this Report.