STATEMENT OF WILLIAM SPENSER, M.D., PRESIDENT, INSTITUTE FOR REHABILITATION AND RESEARCH

Dr. SPENSER. Mr. Chairman, I have prepared three copies of the testimony that I would like to submit in writing at the pleasure of the subcommittee, together with three addenda concerning remarks that I shall make.1 1

Mr. YATRON. Without objection, Doctor, we will include the materials in the record.

Dr. SPENSER. I was most grateful to add another voice to the rising chorus of people who have aroused our collective national and international conscience about the values and importance of controlling the unacceptable personal losses and economic losses that arise from disability in the handicapped.

I, too, have been heartened by the evidence of change in the last 10 years. Particularly section 504 of the Rehabilitation Act added an impetus encouraging more accessible universities, as we have just heard, and increasing job opportunities in vocational rehabilitation.

I need to comment on two developments in the United States which explain why our country has been in a leadership position. It is also true though, that we do have much to learn from other countries.

The concept and practices were initiated by great leaders, going back to Bernard Baruch and Henry Kessler, clearly, Howard Rusk, Frank Krusen. Among legislators, persons such as Senator Jennings Randolph and John Brademas, now president of New York University. Auspicious leadership was provided by Vice President Humphrey and Congressman Olin Teague among others.

We have a strong basis for moving into action if we will heed the messages implied in the programs they initiated for handicapped persons in our country. We also have contemporaries to heed in our planning who have helped develop the independent living movement, such as Harold Russell, Henry Viscardi, Frank Bowe, who is here today to testify, Dennis Reel, Judy Heumann, and Ed Roberts, and one of our colleagues, Lex Friedan, who was just elected one of the Nation's 10 outstanding young men.

These people and many others constitute a national resource that we need to begin to involve in an appropriate way.

Now, those people I just mentioned had much to do with the development of independent living as a completion to the cycle of trying to prevent injuries and illnesses, trying to prevent the complications that lead to loss of ability to function, to perform, whether it be movements necessary for self-care, communication, ability to perceive the world outside of you.

A lot is happening in that field, but we have just added what really is the completion, which is the involvement in the unparalleled effort of handicapped people themselves as people. As a physician this has been an important transition for me to make in my thinking from the physician's often considered paternalistic role,

'The third addendum, "The Inclusion of the Handicapped Person in Community Life," is retained in subcommittee files. It can be obtained by request from the Institute for Rehabilitation and Research, Houston, Tex. The booklet was prepared for the international conference in Houston, Tex., Apr. 10-15, 1980.

telling you what to do, and if you do not do it, he is very sorry, but he knows what is best, to one of more of a partnership once the person has been put into a healthful state, has been afforded opportunities to have the capability to move about in the world, to be able to interact, to adapt, to develop oneself, to listening and utilizing what is their ability to contribute to this overall process you have now as a decade of effort.

I expect to see emerging coalitions between professional groups, facility organizations, associations, but also coalitions of handicapped people and others who are rising in our communities as well as in our Nation's capital.

So I think that it was particularly interesting in trying to decide what to say to you to concentrate the bulk of my remarks on not only the great advances-and there are genuine advances in what I call restorative care that Dr. Robbins and others will just touch on-but rather to look at the meaning of this independent living movement, and the participation of these people and people unrelated to the field of rehabilitation.

The national conference we had in Houston in 1980, preparatory to the International Year of the Disabled, came up with what I believe are potentials for both the charter recommendations and specific action steps that coalesce with these other suggestions. You have a chance to add remarkable emphasis to the purpose of your resolution.

This independent living movement really represented the fruition of the whole idea of rehabilitation that Mary Switzer and many others enunciated many years ago. I think she said, and understood more than most of us, that by achieving together and separately some quality of life that befits a person's potential, whether he has impairments like paralysis or blindness or deafness, to be able to achieve those potentials because opportunities are made available in our great American tradition, eventually will contribute to us all.

Now, in that context, it was interesting that in our Houston meeting, which generated this report, the concept came out of not integration, not mainstreaming, but the word "inclusion." Now, these were people from many countries, France, England, Germany, Australia, South Africa, Bangladesh, Israel, people not just in professions related to rehabilitation, but architects, engineers, authors. It was a very interesting cross section, because we had the belief that we need to understand perspectives besides our own, instead of just talking to ourselves, as we have often done in these fields.

So, what came out was the idea that inclusion was a fundamentally new definition for handicapped persons, not as people who are less than complete, but as full members of society within the rights and responsibilities of all citizens. It was not based on pity, compassion, charity, or fear, which had been used to sell the idea to support, but rather that it stemmed from a humanistic belief of the fundamental importance of the ability to self-determination, dignity, and worth of all persons.

As a physician, too, I have had contact directly or indirectly through my colleagues with over 35,000 people with severe physical handicaps, some as children and some exiting life. If you examine

your own heart, I believe you will agree with me that the opportunity for self-determination resides deep and powerful in all of us. This was both implicit and explicit in our Constitution and Bill of Rights. This conviction and the desire to be regarded with respect as a person which leads to human dignity are the prime movers which drive human beings to overcome adversity as well as to achieve triumphs. Because disability mirrors the absence of personal autonomy and often creates adverse reactions in others, we all dread it, even like mortality.

I think Franklin Roosevelt epitomized the significance of these truths and their power to overcome in his situation, severe handicaps from poliomyelitis. There are many similar examples throughout history, yet today even the common man rises to meet adversity given the assistances needed and the opportunities for inclusion. We have guidelines and examples for the expanded effort embodied in your resolution. You have heard many other examples and reasons today. Yet we need to have a more organized effort. The reason I brought this up is not as a sole example, clearly. Here is a report from Canada equally comparable to our White House conference report which I commend to your attention. I would be happy to leave with you, called Obstacles and the Planning Process, that that entire Nation went through in this context.1

We have technology and the handicapped, by your own Office of Technology Assessment, fairly recently. You have hidden documents like this chart book from the Social Security Administration that identifies nearly 12 percent of working age adults in this country are not employed because of handicapping conditions, and they are not counted as unemployed.

The general principles from the conference sponsored by the Disabled American Veterans and the World Veterans Federation, has been accepted by the International Labor Organization, the World Health Organization, and UNESCO, where there was agreement on purposes and the general principles. Similar principles have been adopted by the long-term planning committee for the United Nations. The United Nations also adopted many of these principles essentially unchanged, which is an addendum to my prepared statement.

But I think they are representative of what we can do in a continuing process, groups of people together to hammer out more specific examples appropriate to different situations and even cultures. At the same time, we urgently need to utilize secondary prevention of disabling consequences of severe impairments of body and mind, as well as vigorously support primary prevention of injury and ill

ness.

I have cited some clear examples where research and development, coordinated services and benefits in our country, and now the independent living movement show what can be done. We now need to move toward a much, much greater percentage of people who have access to those developments as well as continuing research and development.

'The report "Obstacles" is retained in subcommittee files. It can also be obtained on request to the Special Committee on the Disabled and Handicapped, House of Commons, Ottawa, Ontario, Canada KIA0A6.

The amount spent for organized restoration and rehabilitation in facilities developed and/or accredited for these purposes is about 1 percent of our total health care expenditures. We spend only 11⁄2 percent of the essential research, development, education, training, and technology we are doing on curative disease that we will hear more about in this field which is doing now basic and applied research. We can save at least one-third of our early costs in spinal cord injuries for the disabled.

What this says is that we have the opportunity to begin to further develop our capacity to deal with the vast problem that consumes in our country, at least, 71⁄2 percent of the gross national product. How much of this can be changed? I am quite convinced that we can look at 10 or 20 percent of that expenditure over the next two decades and could gradually be traded off and plowed into the kind of magnitude of effort to develop resources, the improved knowledge and technologies that are needed.

I am not suggesting raising total health budgets and disability benefits, but learning how to offset through savings in expenditures from losses prevented. This is controlling losses so characteristic of the insurance casualty industry to control costs by reducing liabilities.

Study groups are beginning to develop this concept and the financial alternatives, both inside and outside government.

These comments have been general and conceptual because concepts of intent as well as money drive processes of change in our society. We have seen that. I have brought the subcommittee some more posters. This one says, "America Needs All Its Citizens." This is a quadraplegic young man who is now a chief estimator for one of our largest construction firms in Houston, Texas.

This is just one concrete example of the reality I have addressed. This poster was prepared under an effort for research, utilization, and independent living, and the project was sponsored by the National Institute of Handicapped Research. Another one is in the poster of a young woman who has quadraplegia and you can see has returned to full and complete responsibility for her family life. I have not chronicled all of the steps going into the precise individualization process, the needed application of new research, knowledge, the development of new technology as in the case of this young woman in the photograph, who is an attorney now employed at our institute. She is totally paralyzed and has used implanted electrical pacemakers for stimulation of her breathing movements for 13 years so she could complete Rice University with honors, and then passed the law boards of the State of Texas, earning enough to live independently and pay taxes.

It is not the technology, therefore, but the whole process from early restoration to independent living which is required. It is the use of it and the availability of it which in the long run, once you complete the cycle with the involvement of the people who are affected in the determination of their whole lives, that this change is going to come about.

So, may your efforts add weight to the benefits we all shall have need for and access to as we face the hazards of disability in our families of an increased life span, of trauma, which is epidemic in this country, of chronic disease, the so-called incurables, which any

one of us may face in our lifetime. Future success shall afford the rewards of adding resourceful years of life at any age and our national capabilities will increase.

We should be able to strengthen our great Nation, and, have humble pride in the valuation of self-esteem and resolve at reasonable cost that control of disability offers. I think the continued dedication to the individual upon which we have built our democracy must not and will not be abandoned.

Thank you.

[Dr. Spenser's prepared statement and appendixes follow:]