MR73/ THE GOAL IS FREEDOM 

THE PRESIDENT'S COMMITTEE ON MENTAL RETARDATION 

Washington, D. C. 20201 
In spite of 

all the ideas and 

all the technology and atoms 

in the world, 

it all comes down 

to shaping one 

individual 

at a time. 

Reprinted with permission from 

Abbey Press, St. Meinrad, Indiana 
The President 

The White House 

Washington, D.C. 

Dear Mr. President: 

It is a pleasure to present to you the seventh annual report of the President's Committee on Mental 

Retardation, MR 73: The Goal Is Freedom.

This is a human document, concerning mentally retarded people who might have lived wasted lives 

had it not been for remedial action that enabled them to develop into contributing members of society, 

freed from those internal blocks that set them apart. 

Some have been able to avoid dependency by early treatment. Some have been brought out of institutions 

into employment and community living. Others have been saved from retardation by preventive measures. 

Both the prevention of mental retardation and the preparation of retarded people for community living are 

relevant to the goals you have set for the nation. 

These achievements have been made possible by the application of modern behavioral and medical 

science in the prenatal, neonatal, and early childhood periods, in addition to the concept of continuous 

development for all retarded persons, no matter what the age. 

Evaluation of programs can now be based on specific data, with records showing individual progress along a 

continuum of objectives toward a stated goal for each person. The criterion for evaluation has changed from 

whether or not the client is being served to how much improvement the client has shown as a result of the 

service. 

We commend these advances to your attention. We ask your support in helping to bring these services 

to all retarded individuals and to all those at risk of being born retarded. 

Faithfully yours, 

Casper W. Weinberger 

Chairman 

(Mrs.) N. Lorraine Beebe 

Vice Chairman 
INTRODUCTION 

This report is not about "the 

mentally retarded." 

It is about a little boy who 

failed to thrive because he had 

been abandoned; a young girl 

suffering from the emotional 

effects of 16 years in a State 

school; a group of "crib cases" 

who were helped to 

function as human beings and 

given their identities; a young 

woman emerging as an adult 

after 26 years as a child. 

The primary diagnosis for 

all of these people was mental 

retardation. The primary problem for each, however, was 

fear, or social inadequacy, or 

physical limitations. These internal, personal barriers to 

freedom were more responsible for keeping them from 

living meaningful lives than their 

IQs. 

When they were recognized 

as individuals, each different 

from the other, each with 

potential for further development, they were given help 

based on individualized 

assessment of their actual 

needs. 

As a result, they did develop, 

and are still developing as 

persons, step by step, toward 

realistic goals. 

The expectation of continuing 

development toward objectives and goals, set on the basis 

of individual assessments, and 

measurable on achievement 

scales, promises to become the 

guiding principle in the 

mental retardation field. 

Consequently, planning for 

services is shifting from a 

program-centered approach to 

a client-centered one. The 

criterion for evaluating programs is no longer: How many 

clients are being served? It is 

becoming: Are the clients 

developing as a result of this 

program? 

The President's Committee 

on Mental Retardation 

therefore has chosen to base 

the first section of this report on 

individual children and adults 

who have grown and developed 

as a result of this goal-oriented, 

personalized concept. Largescale, long-term results are 

not yet available, since 

application of the concept is 

relatively new. 

The report is also concerned 

with other kinds of programs 

that can aid in avoiding 

dependency and promoting 

optimum development. The 

main emphasis here is on prevention of the problem. The second 

section consequently contains 

material related to research on 

prevention and early intervention. It is based on presentations given at a four-State 

Forum held by PCMR in 

Kansas City, Missouri in the 

Fall of 1973. 

Areas covered include prenatal research into the causes of 

handicapping conditions, the 

oldest and at the same time 

the newest method of transporting a high-risk infant, early 

childhood programs for 

handicapped children, and 

treatment to prevent long-term 

institutionalization. 

One of the methods of 

communicating such advances 

is this annual report from the 

President's Committee on 

Mental Retardation to the 

President and to the American 

people. 

Other activities conducted by 

the Committee in 1973—in the 

field of legal rights, early 

childhood intervention, 

preparation for community 

living, housing, public 

information, among numerous 

others—are covered in the 

report's third section. All are 

designed to promote progress in 

preventive measures, or to 

create a climate that will 

enable individuals who are 

retarded to live as normal a life 

as possible. 

Taken all together, the 

underlying philosophy of the 

entire report was expressed 

over 100 years ago by 

Thomas Carlyle: 

"Let each become all that he 

was created capable of being; 

expand, if possible, to his full 

growth, and show himself at 

length in his own shape and 

stature, be these what they 

may." 

DHEW Publication No. (OHD) 74-21001 
MR 73 

Bears witness to the 

Committee’s beliefs that: 

 Mentally retarded people are capable of 

continuing development. 

 Corrective measures introduced in early 

childhood can reduce the severity of the handicap 

and sometimes reverse its course. 

 Prenatal and neonatal biomedical intervention 

can prevent many forms of mental retardation and 

related handicaps.

STEP BY STEP TOWARD FREEDOM 

"We will let him show 

us what he can do." 

He was like a frightened deer when he arrived at 

the children's center. A small, 

wild creature, clawing, biting, 

kicking everyone within 

reach, including himself. 

At five, he spoke only a few 

words. Prolonged screams were 

his principal means of protesting captivity. 

Mentally ill? 

Mentally retarded? 

His last psychological 

evaluation, when he was four, 

tentatively gave him an IQ of 

about 30. 

"Forget the diagnosis," 

said the center's director. "He 

is a frightened child. We will 

work with him and see what 

happens. We will let him 

show us what he can do. And 

then we will work with him 

some more." 

Bryan is seven now, a 

sociable, outgoing little boy 

who is the pride of his foster 

family. Aggressiveness has 

turned into leadership; he 

often plays teacher to his 

class. 

Soon he will graduate 

from the center's program to 

a special education class in 

public school. Later, he may 

be able to move into a 

regular class. No one knows 

yet. After all, he has 

traveled so far in the last 

few years. . . . 

At least it appears that he is 

headed for a self-sufficient 

life. Two years ago he was 

headed for a lifetime in an 

institution. 

Bryan is one of an 

increasing number of retarded 

individuals who are being 

helped to develop toward personal freedom and functional 

independence through 

intensive, individualized 

programs that are oriented 

toward practical goals. 

Rather than being catchall programs planned on the 

basis of IQ level, the newer 

programs are designed to 

answer unique needs, and to 

remove those personal, inner 

barriers that tend to set 

mentally retarded persons 

apart from the rest of society. 

In many cases, retarded 

mental development is not the 

major problem. The main 

factors blocking individual 

progress may be uncontrolled 

emotions, or negative selfimage, or entrenched negative 

habits that are reinforced with 

repetition, or physical 

handicaps. These "side 

effects" are often more 

inhibiting to development than 

mental retardation itself. 

For Bryan, the road to 

freedom has been filled with 

barriers, both external and 

internal, from the day he 

was born. 

He was premature, and 

weighed just a little over two 

pounds. So he stayed in the 

hospital for the first five 

months. There, at least, he 

survived, though just barely. 

From then on, because his 

mother was unable to care for 

him, and because of his 

"failure to thrive," he was in 

and out of hospitals for five 

years. When he was out, he 

was in receiving homes 

except for a brief time after 

his first birthday, when he 

went home. 

A social worker found him 

there, alone, abandoned, 

eating his own feces. 

Each receiving home, 

each hospital did for him what 

their limited resources allowed. 

He wasn't neglected. The 

hospitals treated him for his 

physical ills, and one started 

him on a sensory stimulation 

program, which began to 

bring him out of his emotional prison. 

It wasn't that no one cared. 

They cared deeply, wrote 

long, agonized descriptions of 

his behavior and his needs—

"but his needs reach beyond 

this program. . . ." 

From tests made when 

he was four, he appeared to 

be functioning at a little over 

a one-year-old level, IQ 30+, 

although the psychologist 

noted that his bizarre 

behavior and deprived 

background made meaningful 

results almost impossible. 

He screamed or cried 

constantly, rocking back and 

forth in bed or on the floor. 

He plucked at his skin until it 

was raw. No speech. No 

relationship to people. A little 

boy tuned out, captive of his 

own inner world of terror. 

When he was referred to 

the children's center they 

ignored the test results. 

But there was no way to 

ignore Bryan. 

During the first few months 

there he would tear into the 

director's office whenever he 

got the chance, destroying 

papers, pictures, books, 

3 
STEP BY STEP TOWARD FREEDOM 

anything he could reach. He was five 

then. 

Less than six months later he was still 

running into his office, but now for a 

daily hug, and a little talk. 

By that time, he was quite a little 

mimic with his new-found method of 

communication: Speech. The staff often 

wondered if he would pick up the 

director's Hungarian cadences. He didn't. 

The specifics of treatment at the 

center are carefully and individually 

prescribed, but, more important, the 

attitudes of the staff and administrators 

are shaped by the philosophy expressed 

in every act: Each individual is precious 

and each is capable of continuing 

development. 

When a child is deprived of normal 

stimulation, he often begins to stimulate 

himself. This can become destructive in 

certain children who may injure 

themselves severely by head-banging, 

biting, or other kinds of self-mutilation. So 

the staff attempts to substitute the 

negative acts with positive ones, the 

destructive stimulation with constructive 

stimulation. 

“Early age is the best time to get them,” 

says the director. “When they come here 

they are already failures, rejected by the 

system, rejected by themselves—sometimes by the time they are five years old. 

"Here we try to reinforce success. 

Success is sweet, and it's fun to 

succeed." 

Bryan had no tolerance for failure. At 

first, during the behavior shaping,
there were very few 

successes to reinforce. They 

came more frequently as he 

began to respond to the unfamiliar experience of 

having one person's fulltime 

attention all day in the 

beginning of his therapy. 

Then he moved up to 

groups of two, three, then a 

class of five or six. The 

temper tantrums, the 

screaming, the rocking, and 

finger plucking at his skin 

gradually subsided. 

Eventually—it took many 

months —he decided it was 

more fun to do what the class 

was doing than to go his own 

way. He was discovering that 

cooperation has its rewards. 

He began to choose to 

cooperate. 

Slowly, the academic 

program started. It took 

weeks of training for him to 

be able to sit still on a chair 

and observe the teacher for 

even the briefest length of 

time, one of the first of the 

"educational survival 

techniques" the children are 

taught. 

When he mastered this 

art, the first objective had 

been reached toward the 

goal of learning how to 

learn. 

The check marks on his 

achievement chart were 

moving further over from the 

"Never" column, through the 

"Sometimes," the "Usually," 

and more into the "Always." 

Bryan was ready now to 

learn how to read. 

And so on up the ladder 

of learning and behavior. He 

may not make it all the way 

to the top. The scars of his 

formative years run deep. But 

he is still climbing. 

Even though the program 

at the children's center is 

individualized and highly 

personal, it is systematized 

and structured, the program 

director, a psychologist, 

explains. "We structure the 

situation, and build the environment around the child in 

order to get constructive 

change." 

Each instructional 

program is broken down into 

specific units, each unit 

containing both a detailed 

procedure and a clearly 

defined behavior goal. 

The teacher then can 

record baseline behaviors for 

each of the children studying 

the unit. Thus, research and 

services are joined. The 

children's progress can be 

measured, and also the 

relative effectiveness of each 

of the components can be analyzed. 

After behavior is 

modified to the extent that the 

child is able to exert inner 

controls, the staff begins to introduce academic learning. 

One of the goals is to give 

the child the skills needed to 

survive in the educational 

system. Another is to 

promote inner motivation 

that will carry him through 

on his own. 

"These flowers must 

bloom in the cold, outside 

world, not just in this 

hothouse." 

The staff tries to involve 

the parents as much as 

possible, although only about 

half are able to take part. 

Some are employed by the 

center. 

IQs are seldom mentioned 

there. And although there are 

records containing diagnoses, 

test scores, performance 

assessment and other relevant 

information, they are used 

only as aids to individual 

program planning and 

assessment—never as a 

means of identifying the 

person. They are kept 

confidential. When a child 

goes from the program into a 

regular classroom in public 

school—as many do—no 

labeling goes with him. "He's 

then just a nice kid in school," 

says the director. "Some 

administrators love to call 

children by their diagnosis. 

We don't give them the 

chance. If there's any 

trouble, his mother knows 

where she can come for 

help." 

The center's basic goals 

are best described by the 

director: 

"When we get the 

children at four or five or 

older, the cycle of behavior, of 

performance, is turning one 

way— negative, negative. 

"A temper tantrum is 

negative fun. 

"Then we give them a 

taste of something that's 

more fun. Being hugged, 

patted, smiled at, cuddled for 

doing the right things. They 

soon find that, yes, that is 

more fun than biting and 

screeching. 

"Pretty soon the cycle 

begins to reverse. Slowly. 

We all—all of us—push, 

push toward the positive. Replace all the negatives with 

positives. You take away 

something bad, you have to 

put something good in its 

place. Reach an objective, 

put the next one higher. 

"Now we introduce a 

little academic learning—a 

number, a letter. 

5 
STEP BY STEP TOWARD FREEDOM 

Just a little bite at first. Once they taste 

the joys of learning, the learning itself 

becomes reinforcing. 

"We give a little more push. Positive, 

always toward the positive. The cycle is 

beginning to turn more quickly now. 

"Then all of a sudden something clicks. 

"And you know that the child is 

beginning to push that inner wheel himself. 

That is the wonderful time. 

"When the wheel inside is turning all by 

itself, then he is ready. We are done. And, 

God willing, then he has gained enough 

inner direction, motivation, momentum to 

carry him through. When someone on the 

outside yells at him, he can take it, because 

there is still the inner strength. 

"And the wheel is still rolling— 

positive, positive." 

Contained in those words are the 

"secrets" of helping handicapped individuals 

move toward a life of quality: Replacing 

negative with positive, emphasizing 

strengths, and setting objectives higher 

and higher—but still attainable—as 

each one is reached, toward the goal for 

each individual. 

STEP BY STEP TOWARD FREEDOM 

"You never know how far a 

person can go, once she 

decides she wants to go 

there." 

Last year Yolanda came 

out of the State school where 

she had been since she was 

two years old. She had stayed 

there for 16 years, becoming 

an institutionalized 

"retardate," fearful, docile, 

dull. 

Her first attempt to hold a 

food services job and live in a 

group home failed, and she 

had to return to the institution. 

The second venture into the 

world has succeeded. 

She now has a job as a 

"Girl Friday" with a large 

corporation, where her 

puncture-proof good humor 

has made her an office 

favorite. Through her own 

initiative, she has parlayed 

the job from messenger to 

"office assistant," maintaining 

office supplies, and opening 

and closing the office each 

day, since she is on the job 

earlier and later than anyone 

else. 

In a project she calls her 

"insurance for the future," she 

is teaching herself to type. 

Yolanda originally had 

requested the business 

course at the occupational 

center where she was trained 

for employment but, because 

of her past experience with 

failure, the staff preferred to 

start her in something less 

stressful. So she was 

prepared for food services 

instead. 

"That just proves," the 

center's program director 

commented, "you never know 

how far a person can go once 

she decides she wants to go 

there." 

Only a few of her fellow 

workers know that she used to 

be labeled retarded. 

Yolanda failed in her first 

job not because she was 

retarded, but because she 

wasn't making the most of her 

abilities. When she found 

what she did best—working in 

an office—she bloomed. And 

she is still progressing. 

She may not ever become 

the president of the firm, but 

she'll never again stagnate in 

an institution. Even in 

economic terms, that was a 

poor investment. She was 

costing the taxpayers about 

$6,500 yearly. She's now 

proudly paying taxes and 

contributing in many other 

ways to society and the nation. 

The first experiment in 

group living failed because 

Yolanda prefers living alone. 

Also perhaps because she 

was not so mature then as 

she is now. Counseling and 

personal adjustment courses 

at the training center have 

raised her level of maturity. 

And she's grown out of the 

rebellious adolescent stage 

that retarded as well as most 

other young people go 

through. 

She's enjoying living by 

herself in her own 

apartment—a prime example 

of the necessity for offering 

a choice of life-styles geared 

to the individual. 

Candidates for community 

placement, such as Yolanda, 

are bussed in daily to the 

training center from nearby 

residential State schools. 

Because most are in their 

teens, the center provides a 

high school atmosphere, and 

offers sports and recreation in 

addition to the classes. 

Most of the classes are 

concerned with personal 

adjustments and job training, 

but there is academic work 

also, fitted to job 

requirements. 

Initial concentration is on 

personal adjustment: 

Developing good work 

habits; eliminating the 

internal obstacles to 

progress; telling time, and 

developing a time sense; 

social and emotional 

adjustment. 

There is a great deal of 

role playing and simulation of 

social and work situations. 

"We work to get them to a 

level of maturity that will 

enable them to live in a 

group home or half-way 

house or independently, and 

to work successfully on a 

job," says the training center's 

director. 

After much counseling and 

evaluation of their skills, 

they then start on actual job 

training for food services, 

maintenance or business 

work. For two to three months, 

six hours a day, they work in 

a simulated job situation. 

Around this time, a 

couple of months before job 

placement, they move into a 

half-way house. "The 

program is set up and timed 

so that there will be as few 

simultaneous traumatic 

experiences as possible," a 

counselor says. "Starting a 

job and moving into a 

community at the same time is 

too much, especially if there 

are transportation problems.

8 
The length of preparation varies for each 

individual, depending on whether he or she meets 

the criteria of the center, and whether goals have 

been met. 

When the staff feels a client is ready, and has 

met the criteria, the placement officer goes into the 

community and seeks the jobs to suit individual 

talents. There are several sessions with potential 

supervisors, counseling with them as well as with 

the clients. 

Sometimes the placement officer goes with the 

client for the initial job interview. In some instances, 

this is more for the benefit of the supervisor of the 

job than for the employee. 

Before the job starts, there is transportation 

training. Transportation can be one of the largest 

external obstacles encountered. But accessibility 

of the job to the living situation is always a major 

consideration, before job placement. 

There is frequent follow-up for the first few 

months, then periodic checks for the first year or so. 

The alumni keep in touch, many returning 

once a month for a social evening at the center. 

"We don't deal in IQs," the director says. "It 

doesn't even make any difference whether our 

students are supposed to be 'educable' or 'trainable' 

or whatever label someone has slapped on them. 

All that's important to us is whether they can get 

and- 
STEP BY STEP TOWARD FREEDOM 

hold a job and take care of themselves either in 

sheltered or independent living after they leave here. The 

vast majority make it." 

Throughout the classrooms, there are charts listing 

personal goals, arrived at after many sessions with the 

teacher and counselor. 

Hanging beside the goals chart is a folder containing 

contracts made with themselves in cooperation with the 

teacher, a gentleman's agreement to achieve individual 

objectives. 

"We don't change values here so much as we change 

ways of arriving at values," a teacher explains. 

Yolanda has gone beyond fulfilling the terms of her 

personal contract. She's now setting her own goals and 

values, and they are higher than anyone thought she could 

reach. 

NAME GOALS 

(Training) 

GOALS 

(Personal 

Adjustment 

Training) 

Jimmy Increase speed on 

assignment Stop rolling eyes 

Elrod Stop complaining about 

work 

Stop roving about 

class 

Terry Improve attitude Lower voice level 

Denise Be punctual Stop flirting 


STEP BY STEP TOWARD FREEDOM 

Open-ended progress for each 

individual 

The setting of goals and 

objectives or persons who 

are retarded is quickly 

gaining acceptance throughout the various planning levels, 

from individual programming, through to le 

federal level. The approach 

is realistic and geared to 

the human 

Some programs employ 

minutely detailed individualized assessment charts 

covering every facet of 

functioning. Others use a 

more informal procedure that 

requires a minimum of 

record-keeping. Measuring 

techniques also vary 

according to age, severity of 

handicap, and other factors. 

In goal-oriented, individualized assessment and program 

planning systems—there are 

several varieties—there is, 

first, a one-to-one procedure 

to modify or strengthen 

behavior. This is done to 

enable the person to move up 

from whatever functional 

stage he is in to the next higher 

level. Example: John now 

combs his hair unaided. The 

next objective may be 

brushing his teeth unaided.) 

Each step is measurable 

on individualized assessment 

scales. 

Group planning is possible 

for several persons in a given 

situation when they have 

reached a certain common 

objective. (Example: X 

number of bed-ridden clients 

have become ambulatory, or 

X number of clients living in 

a group home are moving into 

independent living.) The 

administrator can then chart 

realistically the broad 

functioning level of a group of 

individuals and can plan 

programs according to the 

next objective for these 

clients. 

Requirements for staffing, 

equipment, budget planning, 

daily programming and all 

other aspects of program 

planning must be kept flexible 

to meet clients' current and 

actual needs. 

Community, then State, 

and federal planning can also 

be based on cumulative data 

on functioning levels and 

resultant needs for clients in 

order that they can advance 

toward higher objectives. 

Traditionally, in the 

program-centered approach, 

"the mentally retarded" 

Within certain IQ ranges 

have been fitted into existing 

programs. Many of these 

kinds of programs are a deadend for the retarded person. 

Client-centered programs, 

goal-oriented and based on 

individual assessment charts, 

on the other hand, fit the 

program to the client. 

Resources can then be 

redirected toward actual 

needs. 

For instance, clients in a 

day care center might be 

enabled to progress to a 

higher level of functioning 

if given intensified 

occupational training and 

socialization. Some may need 

orthopedic surgery, or dental 

work, in addition. Remedial 

programs of various kinds 

may be needed simultaneously. 

Each step is a prelude to 

the next step in an open-ended 

progression. 

Benefits of the intensive 

training toward an objective 

extend beyond the person 

served. Each person who 

learns to dress himself, for 

example, not only moves up 

from total dependency to 

semi-dependency, but also 

frees the person who has been 

dressing him for more 

constructive duties. 

For people with severe 

handicaps, there are some 

fundamental objectives. 

With rare exceptions, being 

toilet trained and 

ambulatory are basic 

requirements for going to 

school or getting a job, or 

group living. Both are high 

priorities. 

Once toilet training is 

accomplished, self-feeding 

may be possible. Then 

dressing unaided. Then. . . .? 

Who knows how far the 

ladder of development 

reaches for each individual? 

The ultimate goal is the 

achievement of maximum 

functional independence for 

each person within his 

capabilities. 

Is such a goal feasible for 

even the most severely 

handicapped individuals who 

are incontinent and bedridden? The next pages 

indicate the answer. 

13 
STEP BY STEP TOWARD FREEDOM 
Human beings inside. 

Handle with care! 

Viewed through the bars 

of the oversized crib, the 

diapered form lying there 

appears to be all arms and 

legs, frozen at grotesque 

angles. 

Rows on rows of 

similar cribs holding 

similar faceless, nameless, 

sexless bodies line the walls. 

In four wooden chairs 

drawn together, white-clad 

nurses' aides sit mutely 

folding mountains of 

diapers. 

From the other end of 

the ward comes the only 

sound in the room, three 

community youth workers 

huddled together on a 

bench, giggling nervously. 

The place reeks of a 

great variety of human 

waste. 

This is one floor of a 

hospital for the "hopeless," 

the non-ambulatory, 

mentally retarded patient 

with multiple handicaps. 

The linens, floors, walls 

are hospital clean. The 

patients, incontinent as 

they are, are as clean as 

they can be under the 

circumstances. They are 

fed as well as possible, 

considering their limited 

ability to chew and 

swallow. The staff-patient 

ratio is good. 

In short, these patients 

are being served adequately. Requirements for
STEP BY STEP TOWARD FREEDOM 

this patient population needing 

nursing care are being met. 

All other floors of the hospital 

are mirror images of this scene. 

Except one. 

The fifth floor, freshly 

painted in happy colors, is 

alive with murals and artistic 

designs by art students and 

community volunteers. A 

bright corridor leads to a door 

with a pronouncement 

attached: "CAUTION: Human 

beings inside. Handle with 

care!" 

The door opens onto action 

and interaction, involvement, 

motion. A formerly 

nonambulatory boy of about 

eights walks up to greet the 

visitors. He plunges a hand 

into the pocket of his 

corduroy trousers with such 

vigor that they begin sliding 

to half mast, but he hikes 

them up. An aide in a blue 

pantsuit smiles at him as she 

rushes past to catch a frisbee 

released rather than thrown 

by a little girl seated on a mat. 

Near her on the same mat 

another aide is on his knees 

taking a blind child through 

the motions of tumbling. 

A small group of children 

and adults doing art work at 

a table are so involved with 

one another that they are 

oblivious of the visitors. 

Some are staff, some residents. 

It is impossible to differentiate 

from the clothes they wear. 

There are no uniforms. 

In a side room, two young 

children are asleep in cribs. But 

they are there because it is nap 

time, and they are taking 

their naps. Except for their 

shoes, they, like all the others 

on this floor, are fully clothed. 

A few are in wheel chairs 

getting ready to be taken to the 

swimming pool. Everybody 

on this floor gets out at least 

twice a week. 

The walls are in attractive 

pastels, decorated with 

residents' art work and 

posters proclaiming: "If you 

hear the music, join the singing." 

"No bird soars so high as he 

does with his own wings." 

Basically, the needs as well 

as the physical and mental 

competencies of the persons 

living on the fifth floor are no 

different from those of the 

patients on all other floors. A 

few months ago, they, too, 

were lying motionless in rows 

of cribs. 

The staff has not been 

increased for the fifth floor. 

When they weren't changing 

diapers or washing or feeding 

the patients, they used to sit 

and fold diapers like the staff 

on other floors. The staff is 

more in evidence on the fifth 

floor, but it is because on the 

other wards the staff tends to 

disappear for long periods 

during the day, to give in to 

the human urge to

16 
escape from a depressing 

scene, either down the 

corridors or to be absent for 

days at a time. 

There is no appreciable 

increase in the cost of the fifth 

floor center of action over the 

wards of inaction below. 

The changes are not due to a 

demonstration grant, and 

these persons on the road to 

mobility and selfhood will not 

slip back to being immobilized, faceless forms in a 

deadend hospital after a spurt 

of progress. 

A total learning experience 

is taking place here for 

residents and staff alike. It has 

started on the fifth floor; it 

will gradually include the 

entire resident population. 

[Since this section of the 

report was written, the other 

floors have been included in 

the program with comparable 

results.] 

The changes encompass the 

colors, the light, the furniture, 

the living space allotted 

each individual, the personoriented design of that space, 

dynamically and effectively 

used. Words that shape 

attitudes are changed. 

Hospital, ward, patient, 

retardate—all the 

inappropriate terms are being 

removed from signs as well 

as from vocabularies. 

Uniforms are disappearing, 

though roles remain clearly 

defined, and each knows that 

he has a responsibility in the 

total program plan—the 

laundry workers through to 

the director. 

First and foremost, though, 

the change from immobility 

to forward motion on the 

developmental scale has been 

accomplished through the establishment of an ultimate 

goal: Liberation of the person.

STEP BY STEP TOWARD FREEDOM 

“Can you help 

me get out?" 

Age is no deterrent to 

further development and 

successful community living, 

even after nearly a lifetime of 

institutionalization, for some 

people. 

"Can you help me get 

out?" The request came 

unexpectedly from a man 

raking up leaves on the 

institution grounds. He had 

not been on the list of 

residents to be interviewed by 

a county Association for 

Retarded Citizens group, 

there to interest residents in 

community living. 

His hair was white, but 

his step firm, despite his 70 

years. "I don't now how 

long I've been here," he told 

the group. "Long as I can recall." 

He had heard from 

others about the program of 

training being offered, and 

decided that he wanted to be 

a part of it. In a very short 

time, he was accepted as a 

candidate. For the next 

month he went through the 

evaluation tests, including 

social adaptability. He 

passed with ease. 

Now he is having the 

time of his life, living in a 

group home with some 

younger men. 

He likes gardening and 

yard work. So the goal for 

him is a job as a yard man 

in an apartment complex for 

elderly persons, situated 

conveniently near the group 

home. Meanwhile, he is 

making the transition in a 

sheltered workshop run by 

the county ARC. 

"This is really living," 

he says, as he draws up a 

chair for a checkers game 

with the other men after dinner. 

"I'm staying here." 

Some move toward 

independence and freedom 

of choice with ease. Some 

hold back, shackled by restraints too ingrained to 

overcome. 

Miss Bessie's production 

rate outdistanced even the 

youngest worker in the 

sheltered workshop attached 

to the State home for 

retarded people. Every day 

she tried to better her 

record, and often did. 

She was 56, a tiny, birdlike woman who had been in 

the institution since she could 

remember. 

For the past 12 years 

she had been assembling 

components for hair driers, 

and she was proud of her 

work. "Nobody here can 

work any faster than me," 

she boasted, tilting back her 

head with mock arrogance. 

A candidate for community living? She could make

money with her skills. 

"They better not try to get 

me out of here." She bristled 

at the thought of moving. 

"This is my home. I'm 

staying right here. And you'd 

better believe it." 

When Miss Bessie was 

placed in the huge, isolated 

asylum, as they termed State 

schools in those days, it was 

thought to be the ideal life 

for retarded people. 

Miss Bessie still thinks 

so. And for her, it is. Life 

"outside" would defeat her.

19 
STEP BY STEP TOWARD FREEDOM 

Out of the nest 

Janice is 26. She has lived 

at home with her family all 

her life. The only time she 

was away from home overnight was when she spent a 

week at a camp for retarded 

adolescents. 

For six years she has 

worked in a sheltered 

workshop doing routine jobs, 

and generally being 

pleasant, shy and quiet. 

Perhaps that was her 

problem. She was so 

agreeable that she was no 

problem to anyone, so 

she was passed over when 

chances for advancement 

were being offered. 

One day a teacher in the 

program had a long talk 

with her and found she liked 

the idea of working with 

people—"doing things to help 

them." 

Evaluations showed she 

was capable of developing 

beyond her present job, and 

also seemed to be ready for 

moving out of the protected 

environment of living at 

home at the age of 26. 

In this case, it was the 

parents who needed 

counseling more than their retarded daughter. After 

several sessions they began to 

see that she could grow more 

as a mature person if she were 

out of the nest. So she's now 

living in a group home and 

working a few hours a day 

giving lunch to children in a 

nearby nursery school. 

Gradually the time she 

spends there will expand. 

She is making plans to 

move into her own apartment 

whenever she is financially 

capable of the move. A 

friend at the workshop will 

share the apartment. 

In her spare time, Janice 

is now trying to organize a 

volunteer group to go on 

regular visits to a State 

school and provide 

friendship and recreation for 

the residents. 

Long-range goals for 

Janice are being revised, 

with the sights raised, based 

on her short experience with 

new-found freedom. 

"If I get a job will I 

have to leave here?" 

The staff of the group 

home couldn't figure what 

was wrong with Harold. He 

was the most helpful and 

affable of the seven men 

who lived in the home. No 

one was more happy than he 

was to get out of the institution. But he resisted all 

efforts to place him in a job. 

Finally, he confessed. "If 

I get a job will I have to 

leave here?" 

Reassured that he would 

be involved in any decision 

concerning his life, and 

offered freedom of choice, 

he stopped worrying. A 

week later he had a job. 

Home, for him, was the 

group home—at least for the 

present time. 

20 

LOWERING THE RISKS/EASING THE BURDEN 

The positive approach 

The best hope for reaching the 

goal of freedom is prevention of 

the handicapping conditions that 

can rob individuals of their 

freedom and keep them 

dependent throughout their lives. 

Across the nation, research is 

delving into the factors that 

promote healthy human 

development or those that 

disrupt development and result 

in damage that is often 

irreparable. The health and 

environment of both mother and 

father, even before conception 

occurs, is of importance, as is the 

genetic inheritance they will pass 

on to the child. 

From conception on to 

completion of pregnancy, 

development and differentiation 

of tissues and organs, as well as 

growth (represented by increase 

in mass) are major determinants 

of the eventual intellectual and 

emotional functioning of the 

individual. 

Though research has 

uncovered many causes of 

disorders beginning in the 

prenatal period, discovering the 

cause is but one step in the process of correcting the problem. 

Every baby born with mental 

and/or physical disorder is tragic 

evidence of the need for further 

research and application of 

present knowledge. 

So, if preventing handicapping 

conditions is the best hope of 

freedom and avoidance of 

dependency, early and intensive 

treatment is the second best hope. 

A handicap can usually be 

made much less severe when 

treated in the early 

developmental period. When retardation is the result of sensory 

deprivation, research has 

indicated that early childhood 

stimulation and improved 

environment can often correct 

the condition. 

For many children, it is 

already too late for such remedial 

intervention. But it is still 

possible to lessen the handicap 

considerably, and make these 

children less dependent than they 

would be if left untreated. 

Many such research and 

treatment programs are going 

forward across the country. 

Results of the work strongly 

indicate the need for further 

positive action directed toward 

prevention of retardation and 

avoidance of dependency, so that 

more may benefit. 

In order to hear from some of 

the people who are directly 

involved in these fields, PCMR 

held a Regional Forum in the 

Fall of 1973 at Kansas City, 

Missouri, with participants from 

Kansas, Missouri, Iowa and 

Nebraska. Other Forums are 

planned for the future. 

The material in the next few 

pages is based on relevant, 

selected presentations made at 

the Forum. They start at the 

beginning of the chronology of 

prevention, with research on 

reproductive biology. They then 

move on to attempts to prevent 

disorders in high-risk 

pregnancies; through an early 

intervention program for infants 

and young children and their 

parents; and, finally, to an intensive, short-term program for 

severely handicapped children to 

prevent their long-term 

institutionalization.

22 
“The entire potential ... 

in one cell." 

"There is a moment in time 

when the entire potential of the 

individual is in one cell, a single 

microscopic cell invisible to the 

human eye," said Dr. John 

Spaulding in the opening words 

of his presentation at the PCNR 

Forum. 

Dr. Spaulding, Director of 

the Children's Rehabilitation 

Center at the University of 

Kansas Medical Center, 

reviewed the Center's research into various stages of 

prenatal growth. In every 

stage of pregnancy, he 

explained, a number of 

events must occur in 

sequence in order to produce 

a healthy child. 

First, researchers at the 

Medical Center are exploring 

the relationship of hormone 

levels to ovarian function in 

order to learn how conception is 

enabled to take place. 

Then, to determine the 

elements that affect the survival 

very early in pregnancy, they 

are studying tissue implanted in 

the mouse uterus. 

"A severe disruption at this 

very early stage would lead to 

death," said Dr. Spaulding, "but 

a less severe one may still 

distort the entire growth and 

development of that individual 

from there on." 

The Medical Center is also 

investigating placental transfer 

in goats, with exactly dated 

pregnancies. They are especially 

looking into placental transfer of 

various significant drugs, to 

determine the effect of the drug 

on the goat fetus, and the dosage 

relationship. 

Dr. Spaulding also 

discussed the Medical Center's 

fetal diagnostic studies, using 

the technique of amniocentesis, 

to draw fluid from the 

embryonic sac. [Many 

university medical centers and 

some other large medical 

centers are now offering amniocentesis and prenatal 

diagnosis to families.] He 

stressed the necessity for an 

experienced obstetrician to 

perform the amniocentesis; the 

need for a competent lab to do 

the chromosome, or 

biochemical, studies; and an 

expert in genetic counseling to 

interpret lab results and to offer 

a prognosis if the individual is 

diagnosed as affected. 

What, for example, will it 

mean in the life of the person if 

he is found to have Down's 

syndrome? 

"Counseling," he said, "has 

to be connected with some way 

of taking action. If the 

pregnancy is to be terminated, 

an expert obstetrician is

23 
LOWERING THE RISKS/EASING THE BURDEN 

needed. If the pregnancy is to 

be continued, there must be 

follow-up programs." 

In the area of neonatal 

physiology, he described tests 

being done on newborn infants 

that may indicate whether or 

not the child can hear. Earphones are placed on the 

baby, and a pacifier put in his 

mouth. The pacifier is 

connected to sophisticated recording devices. The 

researchers then induce the 

child to suck, and feed 

sound into the earphones—a 

mixture of classical and folk 

music. The infants can be 

conditioned to suck for 

longer and longer periods 

because they seem to like to 

hear the music and "they 

will work (suck) for it." 

When they reverse the 

process, said Dr. Spaulding, 

and turn off the music as 

soon as the child sucks, he 

will then suck less and less 

and less—indicating, it would 

seem, that he can hear. 

"When this test is done in 

the incubator, it has shown that 

the background noise in there 

is deafening. The inside of an 

incubator is a loud, noisy, 

dripping, roaring place. One 

questions whether that's very 

good for the nerves of the 

infant." 

John Spaulding, M.D. 

24 
“The most attractive 

isolate ever made.” 

From five to twenty 

percent of all women who are 

pregnant will have an infant 

who is at some degree of risk, 

Dr. Gerard Van Leeuwen told 

the PCMR Forum. The range 

is related to the socioeconomic structure of the area. 

The six major causes of 

death or brain damage in 

babies, he said, are low 

birthweight, maternal diabetes, 

maternal toxemia, blood 

incompatibility, congenital 

malformations, and 

complications of pregnancy. 

Dr. Van Leeuwen, who is 

Professor and Chairman of 

Pediatrics at the College of 

Medicine, University of 

Nebraska at Omaha, is a 

"practitioner of newborn 

medicine," a specialty that 

requires at least two additional 

years of training after pediatric 

residency. 

In small communities, he 

reported, there is usually one 

doctor who delivers the 

mother, and if the mother has 

difficulty, this means there is 

no one there to take care of the 

baby. Therefore, Dr. Van 

Leeuwen and his team 

emphasize the importance of a 

second, trained person to 

resuscitate the baby. 

He pointed out a few of 

the dangers at the time of 

delivery. Too much oxygen 

may cause blindness and lung 

damage; not enough may 

cause brain damage. Letting a 

baby get cold also may 

produce brain damage, he said. 

Other causes of neonatal 

brain damage that he cited are 

low blood sugar, infection, 

and jaundice when it is severe 

enough for the bilirubin 

(which causes jaundice) to 

reach a certain level in the 

blood and enter the brain—

one of the common causes of 

cerebral palsy. 

One of the methods Dr. 

Van Leeuwen and his team 

use to prevent disability in 

high-risk newborns is a 

transport isolette which carries 

its own oxygen and can be 

used in a car or airplane. This 

equipment plus a box of 

medication and supplies are all 

that is needed to provide total 

care of the infant from the 

moment he is picked up at the 

emergency entrance of the 

referring hospital or the home, 

and brought to the newborn 

intensive care unit at the 

University of Nebraska 

Hospital. 

"Those of us who are in the 

business of preventing mental 

retardation and 

developmental disabilities and 

those who are treating the 

problem often don't realize 

that we're in the same 

business." 

"Probably the best way to 

move the infant, however," Dr. 

Van Leeuwen said, "is inside 

the uterus." 

He called the uterus "the 

most attractive transport 

isollette ever made. It hardly 

ever gets dropped. It never 

runs out of electricity, and it 

has a number of other 

advantages. It keeps the baby 

oxygenated and warm." 

He reported that during the 

first six months of 1973, 75 

mothers were transferred to 

the hospital; in 1963 none 

were. The team transported 

four babies in 1968. During 

1973 they transported 250 

babies. 

By taking these extra 

measures, they initially 

believed they could reduce the 

number of deaths by half, and 

prevent some of the brain 

damage and disability. The 

results, however, have 

exceeded the expectations. 

Dr. Van Leeuwen reported 

that a 1949 to '53 long-term 

survival study in Colorado on 

91 babies who weighed four 

pounds or less at birth 

indicated that 66 percent had 

handicaps. One-third of these 

handicapped children were 

severely mentally retarded or 

had cerebral palsy or were 

blind. 

In the Nebraska program, 

he said, serious handicaps are 

down to about 6 percent of the 

survivors. The survival rate 

has doubled. 

In 1973, he said, at least 

75 percent of the infants under 

four pounds in their program 

appeared to be mentally 

normal and have minimal 

developmental disabilities—

despite the fact that these were 

all high-risk infants. 

Dr. Van Leeuwen added 

that there is still a possibility 

that a number of these 

children may have minor disabilities that would not be 

discovered until they may 

have learning problems at 

school. 

Cost for the intensive 

medical care of a high-risk 

newborn infant is often $5,000, 

he said, and frequently reaches 

$20,000, paid for in a number 

of ways—insurance, parents, 

the State. State dollars have 

not been used for air transport, 

however. "This is a small 

price to pay for a normal brain 

and a normal body," he 

concluded.
LOWERING THE RISKS/EASING THE BURDEN 

 Goals for each child 

The purpose of the Infant Development 

Center, Lake Quivira, Kansas City, Kansas, is 

to provide developmental education 

immediately upon identification of highrisk or suspected atypical infants, and to 

provide supportive and informative counseling 

for the family. The program was described 

to the PCMR Forum by the Center's 

director, Lee Ann Britain. 

"The impact of the birth of a 

handicapped child on the family is a 

devastating experience." 

"We like to get to the mother right 

away and give her emotional support, 

and let her meet other mothers in similar 

circumstances." 

"The mother, or whoever has the 

primary care of the child, is the 

developmental educator, trained by the 

Center's staff." 

"Highly individualized goals are set for 

each child by the staff in the 

development of gross motor, fine 

motor, adaptive, language, and 

personal-social skills." 

LOWERING THE RISKS/EASING THE BURDEN 

If we don't do anything for this 

child now... " 

To prevent long-term 

admissions, Woodward State 

Hospital-School, Woodward, 

Iowa, has started a short-term 

intensive treatment unit and 

respite care program for children from birth to 12 years of 

age, Dr. S. B. Hussain, Clinical 

Director, reported in his PCMR 

Forum presentation. 

The expressed purpose is to 

assist parents in the home 

management of their child and 

possibly avoid the need to place 

him in an institution. 

"The difficulty of rearing a 

retarded child in the home can 

be reduced through early 

intervention in behavior 

management and special 

therapy techniques," Dr. 

Hussain said. "When we see a 

child in the Diagnostic Clinic 

with serious problems, we 

know that if we don't do 

anything for this child now, 

he'll be a long-term 

institutionalized person." 

He cited examples of children 

with "legs like scissors," children 

who are hyperactive, or not toilet 

trained. The schools can't serve 

these children, he said. So the 

clinic admits them for two or 

three months, has orthopedic 

surgery done, or toilet trains the 

child, or provides behavior 

modification. Then they train the 

parents in physical therapy or 

behavioral techniques, or 

whatever is needed to continue 

the treatment. The child can then 

live at home and go to school. 

 
The teachers are also advised on the child’s needs. 

Dr. Hussain told of an 8-year old child with Down's syndrome, who 

vas in the short-term respite care grogram. At the time of admission, 

he had no independent self-help skills. Three months later when she 

was discharged, she was able to feed and dress herself and meet her 

toileting needs independently. 

All of the children given the intensive, short-term treatment at the unit are 

back in their communities and progressing well, according to Dr. 

Hussain. Left alone, he said, these are the sure candidates for long-term 

institutionalization. 

29 

PCMR BELIEVES THAT: 

Mentally retarded people are capable of continuing 

development 

The fact that people who are retarded can develop with intensive care and under favorable 

environmental conditions has been effectively demonstrated. A hostile environment, however, 

can block progress even when the internal barriers to growth and development have been 

removed. 

In order to promote a more receptive environment in which persons who are retarded can 

develop in the freest possible way, with the opportunity to exercise the same rights as other 

citizens, in 1973 PCMR: 

Held the first national conference on The 

Mentally Retarded Citizen and the Law to 

help educate the legal profession and the 

public to human and legal rights to which 

retarded persons are entitled; 

Assisted in the preparation of two publications 

resulting from the legal rights conference: One 

a professional legal reference document; the 

other an action-oriented report for a general 

audience; 

Promoted acceptance of retarded citizens in 

communities, and emphasized their right to 

choose a place of residence, through radio and 

TV public service announcements, distributed 

nationwide; 

Launched a joint effort with architects to 

improve building codes, zoning regulations, 

and other barriers to community living; 

Contracted for updating the PCMR 

publication that was so influential in 

promoting the normalization principle, 

Changing Patterns in Residential Services for 

the Mentally Retarded; 

Directed preparation of a monograph on 

planning community services for mentally 

retarded persons living away from home; 

Cooperated with the Law Enforcement 

Assistance Administration in a Southeastern 

Regional Conference on the Mentally 

Retarded Citizen and the Criminal Justice

System; 

Joined with the American Association on 

Mental Deficiency in a regional conference on

legal rights in Morgantown, W.Va.; 

Participated in a Conference on Services for 

the Retarded Adult held in Santa Barbara, 

California; 

Published a professional paper on 

Experimental Studies of Memory in the 

Mentally Retarded, which explores the 

learning process and possibilities for 

accelerating it; 

Took leadership in exploring the effects of the 

energy shortage with several private and 

governmental organizations serving retarded 

persons, and designed a survey on the impact 

of cuts in heating fuels and gasoline on mental 

retardation programs; 

Proposed to the Secretary of DHEW ways and 

means to meet the urgent need to develop 

executive manpower for mental retardation 

and other human services programs. 

31 
PCMR BELIEVES THAT: 

Corrective measures introduced in early childhood can 

reduce the severity of the handicap and 

sometimes reverse its course 

Research data strongly indicate that the first five years of life are crucial in the development of each 

individual. This is especially true of children born with a handicap. If problems are detected and 

treated in these early years, the damage can often be considerably lessened. In some cases, the 

course of the condition can be reversed. 

To encourage early detection and correction of handicaps, and to publicize the most recent 

advances, in 1973 PCMR: 

Published a definitive monograph on Screening 

and Assessment of Young Children at 

Developmental Risk, an extension of the theme 

of a 1972 PCMR conference on the subject;. 

(Available only from Superintendent of 

Documents, GPO, Washington, D.C. 20402. 

$2.40. SN 4000-00294.) 

Completed plans to cosponsor a Conference on 

Infancy and Early Childhood Education, with 

the Association for Childhood Education 

International, and several other agencies, to be 

held in the spring of 1974; 

Published a professional paper on Malnutrition, 

Learning, and Intelligence, summarizing 

research data on the effects of malnutrition on 

brain growth and learning ability. 

Dr. Henry Cobb lends a hand with phonics.

PCMR BELIEVES THAT: 

Prenatal and neonatal biomedical intervention can prevent 

many forms of mental retardation and related handicaps 

Reproduction is an intricate process. One extra chromosome in the genetic inheritance, a virus contracted by 

the mother at a certain time in the pregnancy, an untreated infection, these and many other factors can 

cause the child to be damaged. 

To stimulate advances in the techniques of prevention of mental retardation, and to inform the public 

on preventive measures, in 1973 PCMR: 

Brought together a group of leading 

geneticists to review the state of the art and 

to identify methods of meeting needs; 

Produced a series of radio spot 

announcements in English and Spanish to 

inform prospective mothers on how to 

increase their chances of having healthy 

children. 

Marianna Beach offers a reward for 

improved behavior. 

34 
There was other Committee business in 1973 that touched on each of these areas. Members 

and the executive director addressed numerous groups and attended conferences in this 

country, Europe, England and Latin America. They testified before committees; they were 

interviewed on radio, TV, and for newspapers and magazines. 

Some 1973 Committee activities that touched on all areas in the mental retardation 

field included: 

A Mid-Atlantic Leadership Training Institute held 

in Richmond, Virginia, which brought together 

people from Pennsylvania, Delaware, Maryland, 

Virginia, West Virginia, and the District of 

Columbia, to report and discuss progress and 

problems in mental retardation in those States; 

A Midwest Regional Forum held in Kansas City, 

Missouri, at which representatives of Kansas, 

Iowa, Missouri, and Nebraska gave presentations 

and demonstrations of their programs to aid persons 

who are mentally retarded and to prevent 

handicapping conditions; 

Advance meetings to plan for a major InterAmerican Conference on Mental Retardation to be 

held in 1975, in which PCMR will participate. 

Louise Ravenel and 

PCMR Executive Director 

Fred Krause get involved. 

Dr. Cecil Jacobson observing 

a pre-school class. 

35 
PCMR MEMBERS 1973 

Caspar W. Weinberger 

Chairman 

N. Lorraine Beebe 

Vice Chairman 

Michael R. Gardner 

PCMR STAFF 1973 

OFFICE OF THE 

DIRECTOR 

Fred J. Krause 

Executive Director 

Helen C. Caldwell 

Ruth Ann Metzger 

PROGRAM OFFICE 

Allen R. Menefee 

Program Coordinator 

Alfred D. Buchmueller 

Elizabeth S. Bush 

James M. McCormick 

Michael J. Offutt 

Linda E. Walder 

William H. Wilsnack 

Gwendolyn R. Coleman 

Gail M. Gorman 

Pierrette A. Spiegler 

INFORMATION OFFICE 

Raymond W. Nathan 

Director of Communications 

Martin Bouhan 

Mary Z. Gray 

Nancy O. Borders 

Beverly M. Keith 

Mattie A. Smith 

MANAGEMENT OFFICE 

Stanley J. Phillips 

Management Officer 

Ruth G. Gray 

Patricia S. Kramer 

Larry Lane 

CONSULTANTS 

Harold S. Barbour, Ed.D. 

Leo F. Cain, Ph.D. 

Julius S. Cohen, Ed.D. 

Louis Z. Cooper, M.D. 

Ross H. Copeland 

Patrick J. Doyle, M.D. 

Maurice Flagg 

Erwin Friedman, Ph.D. 

Dennis E. Haggerty, LL.B. 

Edward L. Johnstone 

Paul A. Rittmanic, Ph.D. 

George Tarjan, M.D. 

John D. Thompson, M.D. 

Thomas A. Tucker

The President's Committee 

wishes to express its sincere 

appreciation for the gift of 

time and talent by Andrew J. 

Molnar, Vice President and 

Art Director of Ceco 

Publishing Co., Troy, 

Michigan. 

The Committee also wishes 

to thank the numerous 

individuals in the following 

facilities who contributed 

many of the photographs, 

much of the information and 

most of the inspiration for this 

report. 

The National Children's Center, 

Washington, D.C. 

The Occupational Training Center, 

Washington, D.C. 

Sunland, Tallahassee, Florida 

Sunland, Marianna, Florida 

Montgomery County (Maryland) 

Association for Retarded 

Citizens 

University of Kansas Medical 

Center, Kansas City 

College of Medicine, University 

of Nebraska 

Infant Development Center, 

Kansas City, Kansas 

Woodward State Hospital School, 

Woodward, Iowa 

The Hospital for Sick Children, 

Washington, D.C. 

Mental Retardation and Child 

Psychiatry Media Unit of the 

Neuropsychiatric Institute, 

University of California, Los 

Angeles 

Illinois Braille and Sight Saving 

School, Jacksonville, III.
A FINAL WORD FROM THE EXPERTS 

“Not everybody’s the same.” 

In a completely spontaneous, frank discussion, a group of eight adolescents sat down together one evening in 1973 and talked about mental 

retardation. All had been in special education classes, all have grown 

up with the label "retarded." 

Their conversation was video-taped at the Mental Retardation and 

Child Psychiatry Media Unit of the Neuropsychiatric Institute, 

University of California, Los Angeles. With UCLA's permission, 

these quotes were taken from portions of the discussion. 

"I think when we were 

being born, Mother Nature 

made some mistake and it 

damaged part of the brain 

and something didn't turn 

out right, and it held us 

back." 

"A different thing happened 

to each of us." 

"Not everybody's the 

same." 

"It depends on the 

person—on how much 

they have on the ball." 

"Like my cousin Russell. 

All the time, 'I can't do 

this,' and 'I can't do that.' I 

tell him, 'Russell, yes you 

can. You can, too' " 

"Like me. I try because I 

want to get ahead. In 9th 

grade I got out of Special." 

"To accomplish something 

takes you twice the 

effort.... To get a C, I 

would have to work like an 

A student." 

"Once I sat down and 

cried because I was in a 

gym class and I had a 

problem. Everybody threw 

rocks at me and ran up and 

hit me and I turned around 

and hit them back. The 

teacher walked around 

laughing and showing this 

roll book. It said F F F F. 

Eventually I got out of this 

class.... I was put in a 

special gym class where 

some people had problems 

and where people were 

more grown up. Later on, I 

went to a doctor for some 

help, and I found out what 

the problem was: ... Very 

poor visual perception. 

That was the thing that was 

holding me back." 

"I realize that I'm 21 and I 

... want to have a car and ... 

all these things. And yet I 

get uptight about it with 

myself ... I'm my own worst 

enemy. I just told the guys 

the other day, 'There's only 

one person in this apartment 

that I don't get along with: 

Me!' " 

"The emotion does figure in 

it. It's reversed. Because you 

want to do things but you 

know you can't. And you 

keep on fighting it and you 

keep on pushing harder and 

harder to get there faster 

and faster." 

"We'll have problems with 

holding certain types of 

jobs. Like I know I'll 

probably never make it to 

be an engineer.... The 

question is still open." 

"I wanted to be a social 

worker. But it would take 

me 14 or 15 years to do it. 

So, realistically...."

39 
"You have to face the fact 

that that's one thing you 

can't do." 

"You know you are 

[retarded], and everybody 

calls you it.... But you don't 

want to say it. You know 

you are within. It chops you 

down." 

"It's more the way it is said. 

It's not just that word. It 

could be any word, really." 

"I think parents should tell 

the kid what is wrong with 

them. They're going to have 

to find out sooner or later." 

"Sooner is better than 

later." 

"You can't hide it from the 

kid because he's going to 

find out eventually anyway 

that there's something 

wrong—like I did." 

"You gotta evaluate the 

youngster on an individual 

basis. Not compare one to 

another, like a tennis 

match." 

"But discipline should be 

the same for all children." 

"Even though they* may 

have learning problems, 

they're human beings just 

like everybody else, and they 

deserve basically the same 

treatment as any other 

human being." 

"The object is to motivate 

them to try harder ... and to 

encourage them." 

* Some of the speakers use 

"they" in referring to other 

retarded persons. 

"You never stop learning. 

You learn things every day 

of your life." 

"Let the kid go out and 

make his own mistakes and 

learn from them." 

"They'll grow out of some 

[of the mental retardation], 

but if the mother protects 

them, they'll never grow out 

of it." 

"They'll go into a shell. A 

live vegetable." 

"You aren't going to learn 

anything if somebody's 

doing something for you all 

of the time." 

"My mother will always see 

me as a baby, no matter how 

old I get."

40 
"You have to have the 

experience of knowing how to 

live when Mom and Dad 

aren't around. Because one 

day they die, too." 

"And later on in life, nobody's 

going to teach you how to be 

independent and what to do." 

"There comes a point when you 

have to let go ... when you've 

got to get them their freedom. 

Slowly, but surely, they'll get 

their independence."