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Dr. Bailey. The Germans have a word, “augenblickdiagnostic," which means a highbrow diagnosis. Using that as a point of departure I would agree with you, sir.
The CHAIRMAN. Off the record. (Discussion off the record.)
Dr. TRAEGER. Mr. Chairman, I am really embarrassed about the length of time these hearings have taken, and I would like to crave your indulgence to see if Dr. Harry Sands can present for the record a statement dealing with the problem of employment of epileptics. We will not take your time now, but I would like to be sure that his statement will be a part of the record.
The CHAIRMAN. Certainly it will. We have some few minutes if
Dr. TRAEGER. Very well. Dr. Sands, will you take 2 minutes, please?
STATEMENT OF DR. HARRY SANDS, EXECUTIVE DIRECTOR,
EPILEPSY ASSOCIATION OF NEW YORK
Dr. SANDs. We have heard a rather revealing fact this morning. Many of us did not pay much attention to it. That was that 80 percent of the persons with epilepsy can have their attacks controlled right now, if they get good medication.
We ought to see another side of the problem that we have not spent too much time on, and that is the problem of the rehabilitation of persons who have some facilities right now. Perhaps we have talked about the research problem in a vacuum. We have not tied it up with the partnership that goes along with the kinds of things that the private agencies can do, and also the problems of rehabilitation.
Right now, even when we control a person's seizures completely and he does not have any attack because he is on good medication, this person cannot get a job if it is revealed that he has epilepsy.
In 18 States in this country we find that they are not permitted to marry. In fact, in the State of Indiana, a woman who marries an epileptic can get a sentence of imprisonment of not less than 2 years and not more than 21 years. In the State of New Jersey a similar situation exists, in the sense that no marriage license shall be issued when either contracting party has epilepsy.
Even though epilepsy is not a hereditary disease and it is not contagious, you cannot now enter the United States and get treatment for epilepsy. You are barred at Ellis Island or at any port of entry. In short, if you are to try to seek care in this country for epilepsy, though it is not a contagious disease, you are not permitted to enter, or you are at least held up.
We cannot go into a full discussion of this social and economic aspect of epilepsy at this late hour, but we can indicate that if we are going to permit persons with epilepsy to be employed—and they should be employed; there is not any reason at all they should not be employed—we have to reenfranchise them. It is impossible to say to a person with epilepsy now, “Your attacks are controlled. You are perfectly normal, like anybody else in the population. You are a bright person. There is not any reason why you should not indulge in everything else that everyone else indulges in," and then have the kinds of obstacles placed in his way that are placed there, so that he cannot make a good employee.
Insurance companies are reluctant to insure an epileptic, though there is very little data to suggest that a person with epilepsy is accident-prone. At the Ford Motor Car Co., where they have employed a good number of epileptics, they have not had a single compensation case. Yet epileptics find they must keep epilepsy a hush-hush disease. If they do not do that they are not permitted into employment.
There was an incident in Washington the other day, where a local physician called me, who was quite upset because a person with epilepsy had a psychomotor attack on the streets of Washington as he was crossing the street with his fiance, and his fiance called the local policeman and asked him to help this person back on the sidewalk; and the policeman proceeded to lock him up because he had been crossing against a red light, even though he had picked out of his wallet a slip saying he was an epileptic. The result was that one of the local doctors had to go down to court and bring him out.
We can multiply these experiences across the country. We are not dealing with just a neurological entity, but a social entity and an economic entity as well.
What we have to do, it seems to me, is to have a partnership, where basic research must be carried on, but public education, too, must be carried on, as well as rehabilitation, so that we can make use of the abilities and capacities of these people as they exist right now. You just cannot tell an individual to wait until something comes out of the laboratory. I think we all must recognize not only the importance of research but the importance of rehabilitation as well.
The CHAIRMAN. We thank you, and we would like for you to add what you wish to your statement, to be made a part of the record.
(The information is as follows:)
STATEMENT BY THE EPILEPSY ASSOCIATION OF NEW YORK, HARRY Sands, Ph. D.,
The National Committee for Research Into Neurological Disorders reports 14 million Americans with epilepsy. But this statement by the Epilepsy Association of New York will deal primarily with the many millions more Americans who do not have epilepsy. For it is the neighbor, teacher, employer, fellow employee, and other member of the community who is at the core of "suffering" associated with the epileptic.
Medically, 80 percent of those subject to epileptic seizures can be controlled. This is a fact; no longer a goal. However, epileptics as well as those of us who work on their behalf are often inclined to ask, “Does control solve the problem?"
We know enough about people with epilepsy to be able to state unequivocally that in other respects they are normal. As school children they are intelligent as others. As employees they are equally productive, at least, as their fellow workers. As people they are inclined to enjoy entertainment, social life, hobbies, and other diversionary pursuits—just like everybody else.
But from earliest childhood they are forced, by circumstances beyond their ability to affect, to live under a stigma. This stigma, a completely alien way of thought for free Americans, is reminiscent of the Dark Ages, witchchaft, and totalitarianism. Because of the stigma people with epilepsy are forced into hiding. Many-and who can blame them-resort to any subterfuge to keep from being discovered. What are the consequences of discovery?
For small children being known as an epileptic means being left out of children's games. In many States it means being left out of school, or being obliged to seek private instruction. Bear in mind this refers to the epileptic child whose seizures are under control and who is medically, for all intents and purposes, normal.
Let us follow this child into adult life. First of all imagine the psychological impact of his forced isolation and his continuous feeling of being left out. Imagine the case of most young people with epilepsy who have had to come out into the world with substandard educations because they were needlessly left out of school. With this background think about the controlled epileptic who seeks marriage, a family, and of course a job to support these objectives.
Seventeen States in our country forbid persons with epilepsy to marry. The penalties for disobedience of these inhuman laws are excessive fines and/or imprisonment. Until recently many more than 17 States pursued this course. Another State does not forbid the marriage of epileptics. It simply insists, again under penalty, that the person with epilepsy who enters into marriage subject himself or herself to sterilization. This is in spite of the fact that leading medical authorities hold that epilepsy is no more hereditary than other prominent disorders such as tuberculosis, diabetes, and others.
Epileptics are forbidden to immigrate into the United States. They are even detained at Ellis Island and other ports of entry when they have come to this country, leading Nation in the world for the treatment of neurological disorders, only to receive treatment. It is common knowledge that epilepsy is not contagious.
Nor is the United States the only country which bars epileptics. An American citizen with epilepsy is forbidden to enter Canada and other nations for treatment or for other purposes.
Perhaps the greatest source of frustration for the person afflicted with epilepsy is his inability to get a job or to hold a job when his condition becomes known. Employers and coworkers are among those with the greatest misconceptions on the subject. Let us attempt to set the record straight: The safety director of the Ford Motor Co., one of the few large companies which knowingly employ persons with epilepsy, has reported, “Accidents are so low among the epileptics that it would not convey any data worth looking at.” Many employers, moreover, do not know that workmen's compensation insurance policies do not penalize employers for hiring handicapped workers, including workers with epilepsy. Workmen's compensation insurance policies are not rated by reason of the employment of epilepties. This is on the authority of the National Association of Casualty and Surety Companies One fact emerges as crystal clear. Epileptics can work, not only for their own benefit but also for the benefit of the Nation.
The Federal and State rehabilitation and employment agencies, as well as private health organizations, would enrich our Nation by increasing their services on behalf of epileptics. For every dollar spent in this useful and humanitarian effort, more than $10_much more in taxes can be returned to the well-worn pocket of American taxpayers. It is simply good business sense to convert idle people into productive workers. As wage earners, these people are willing and able to share the tax burden, instead of to partake of it.
Clearly the social and economic problem presented by epilepsy is vast. Its unraveling will take the combined resources and efforts of government and voluntary agencies. The Epilepsy Association of New York welcomes the assistance of all individuals and groups who can be coaxed, cajoled, or in any other way persuaded to join the fight. We salute the good start that has been made by the Office of Vocational Rehabilitation and the Institute of Neurological Diseases and Blindness, both divisions of the Federal Department of Health, Education, and Welfare.
The CHAIRMAN. There has been reference made throughout to basic studies in chemistry and the biosciences. I want to make it known for the record that this committee has consistently supported the work of the National Science Foundation, whose function is the support, as you know, of the basic sciences.
Are there any other witnesses, Doctor?
Dr. TRAEGER. No; there are no other witnesses. Dr. Bailey, do you have any suggestions?
Dr. BAILEY. No.
The CHAIRMAX. Has everyone here today had an opportunity to be heard ?
Dr. TRAEGER. Yes, sir. I just have one closing sentence I would like to give, and I hope you do not think it is facetious.
The CHAIRMAN. You may proceed.
Dr. TRAEGER. I have been reading the newspapers about these hearings and the magic number appears to be 10 years to discover the cure of some of the disease categories which have appeared before you. I have no such magic number for neurology. In my opinion such prognostications are "crystal ball” guesses.
This much I can prognosticate: Given adequate financial support, we in the neurological field will come up with the answers just as fast as the boys in the rest of the fields.
Thank you for your attention. The CHAIRMAN. Well, I could not permit you to make a statement of that kind and let it go by without some comment.
The gentlemen who have appeared here before us and who have seen fit at different times to make some prophecy as to the future were of such a caliber and of such a standing that when they expressed opinions, based in some instances upon practically their life's work and their knowledge of what has been accomplished and what it can lead to, who have seen fit to make such statements as you have referred to, I would be inclined to give them some credence. I have too much respect for those who did that and who made the prophecies.
Is there anything further?
May I express to this group and to you, Dr. Traeger, our thanks and appreciation for your appearance here today and the assistance you have given us. You have given a very fine leadership to this group, and the group has responded as we would anticipate they would, being men with the experience they have gained. We feel that you have added very considerably to the work of this committee in the assistance you have given, and we feel deeply appreciative of the fact that you have taken time out of your busy lives to come here and make known to the committee this information which
have brought to us.
We thank you for what you have contributed, and we appreciate the sincerity with which it has been offered to us.
Dr. TRAEGER. Thank you very much, sir.
The CHAIRMAN. Now, while these folks are leaving us, will the individuals who are here on the subject of blindness-Dr. Johnson and the others who are with him—take their places at the witness tables.
(Thereupon, a short recess was taken, after which the following proceedings were had.)
The CHAIRMAN. The committee will come to order, please. This morning we listened to testimony on the neurological disorders. There was some consideration then of the neurological and sensory disorders as a whole because research on these disorders is closely related, but the specific problems of blindness have yet to be brought under discussion and we are going to take them up this afternoon.
In spite of the fact that there are 260,000 totally blind in this country and 60 more are deprived of their sight each day, our view of this situation is somewhat different than our view of other major medical problems. This is not to say we are not aware of the prevalence of blindness in the United States, but that loss of sight seems to carry with it such connotations of hopelessness and inevitability, that we tend not to think of the possibility of its elimination as we do, say, with cancer, heart, and the neurological diseases.
Nevertheless, blindness is caused by many diseases—cataract, glaucoma, and retrolental fibroplasia among them—and disease, we know, is eventually either preventable or treatable. To what degree, then, we are taking and can take steps in the prevention or treatment of the blinding eye disorders, either through research or other means, is a matter of keen interest to this committee.
We are also deeply concerned with what happens to those who have already lost their sight. We know, of course, of the great work which many agencies, public and private, including those represented here today, have done to help the blind help themselves. We should like to know more about this work and what further work must be envisaged for the future.
It seems clear to me that the country must make every effort to aid those whose vision is totally or almost totally impaired to achieve or maintain their dignity and independence. The personal and economic costs of this effort to individual and Nation, however, I should guess are very high, and everyone must look forward to their diminution or virtual elimination. To what degree and when this may be achieved, is, therefore, also a matter of concern and I hope our witnesses will be able to cast further light on this matter.
We will have inserted in the record at this point the prepared agenda and the list of participants in these hearings.
(The material follows:)
What are the ophthalmic disorders?
wages, tax revenue, welfare services provided by community, State,
or Federal Government? Cost of ophthalmic disorders to the individual and family in terms of
medical expenses and personal tragedy? 3. The attack on the ophthalmic disorders:
What do we know today concerning methods of prevention, diagnosis,
and cure of the ophthalmic disorders? In terms of the knowledge available, what medical, educational, and other
facilities and what medical manpower is presently available to deal
with these problems? What research has been achieved in the past decade to successfully com
bat the ophthalmic disorders; to what degree is new knowledge being applied; how profound is the research attack on these problems, to what
degree is manpower being available to combat these disturbances ? 4. The needs of the future:
How much must medical paramedical facilities and services be extended
to meet the problems in various ophthalmic disorders; what is needed and what are the present and probable financial handicaps in securing
them? Promising areas of research which must be pursued, new areas of re
search to be opened up in this field vitally necessary. 5. What can we do organizationally or by legislation about strengthening the
Nation's attack on the ophthalmic disorders?
In research, research facilities, and training?