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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
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.
Thank you. 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 SAND, Ph. D.,
The National Committee for Research Into Neurological Disorders reports 112 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 eren 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 epileptics. This is on the authority of the National Association of Casualty and rety 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 CHAIRMAN. 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 you 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.
In lay language, this means that the definition of blindness includes not only those persons totally blacked out but also those with some remaining vision, which can range from bare light perception to an amount which enables them to see at 20 feet what the person with normal vision can see at 200 feet; and the definition also includes those whose field of vision is so restricted that if they were to grasp a 12-inch victrola record between the thumb and forefinger of each hand and hold it out at arm's length, they could not see their fingers grasping the record. While it is admitted that the loss of one eye is a distinct handicap, the one-eyed person is not considered a blind person in this report.
For the purpose of this hearing today, it seems advisable to highlight certain portions of Dr. Hurlin's report of July 1952 as follows:
Rates of prevalence of blindness in the respective States were determined by the application of a complicated statistical formula arrived at by Dr. Hurlin on the basis of three factors:
1. The composition of the population with respect to age. 2. The composition of the population with respect to race or nonwhite components (Negro, Indian).
3. The public health standards of the State in terms of the infant death rate.
The series of estimated prevalence rates is anchored on a rate for North Carolina computed from an actual count of blind persons within that State made by the State commission for the blind as of the end of June 1952.
The average estimated rate per thousand population in the entire Nation is 1.98.
The lowest rate-1.40 blind persons per thousand population-is that for Utah.
The highest rate—3.42 per thousand population-is that for New Mexico.
The estimated rates of all the States reveal a geographic relationship with 10 of what we might roughly call Southern States and the District of Columbia having a rate higher than 2.4 per thousand; 13 of what we might roughly call border States and the State of Maine have a rate between 2.0 and 2.3 per thousand; while the remaining 25, or Northern States, have a rate less than 2.0 per thousand.
There is no evidence that the racial factor represents a true biological difference. Rather, it is probably a reflection of less education and lower economic standards of the Negro and the Indian which have affected their ability to withstand disease.
The present method of Dr. Hurlin of making estimates of the rates of prevalence of blindness is designed to approximate differences in the rates for States at a given time; it does not serve as well for estimating changes with time.
Because eye diseases--especially cataract and glaucoma-occurring most frequently among older persons accounts for at least two-thirds of existing blindness, and because the proportion of the population aged 65 or over increased by almost 20 percent from 1940 to 1950, it is not unreasonable to assume that the prevalence rate of blindness as well as the number of blind persons will continue to increase. This assumption is additionally augmented by the prevailing incidence of blindness among prematurely born babies. At both extremes of the life span medical science seems to be saving life or prolonging life, but,
ironically, that same science seems not to be able to cope with the serious and negative byproducts of its own efforts.
It is estimated that, unless medical research makes a very real contribution to the prevention of blindness area, there will be at least 60,000 more persons who will lose their sight permanently within the next 10 years.
The American Foundation for the Blind is not medically oriented. We leave to those organizations concerned with the prevention of blindness this very important part of the presentation concerning diseases of the eye and the specific medical research needed to control or eliminate them.
We turn now to the second part of our presentation which concerns the estimated economic burdens placed upon the Nation because some of its citizens happen to be blind. It is generally accepted among workers in our field that about 10 percent of the blind are under 20 years of age and that about 50 percent are over 65 years of age; and also that about 25 percent of all the blind are employable and that about half of the latter can be employed only in sheltered workshops and in home industries, while the other half can be employed in competitive industry and in the professions. Applying these generally accepted percentages to our national estimate of 314,000 blind persons in the United States as of July 1, 1953, we would have 31,400 under 20 years of age; 157,000 over 65 years of age; 36,250 employable in sheltered workshops and in home industries; and 36,250 employable in competitive industry and in the professions.
What do these figures mean to the economy of our Nation? Conservatively speaking, about 20,000 of the blind persons under 20 years of age should be in school. However, according to our best information, only about 7,500 are enrolled at the present time. Figures from the Research and Statistics Standards Section of the United States Office of Education show that it would cost the Nation approximately $2 million per year to educate these 7,500 if they were sighted. However, because they are blind, it is costing the Nation approximately $15 million per year to educate them. Blindness here is adding about $13 million per year to the public education costs of our Nation. However, for the record, we should like to submit that this amount is not nearly sufficient to give the present number of blind children an education equivalent to that which they might have had if they were sighted.
Ninety-eight thousand five hundred and thirty-six blind people are presently receiving public assistance and some of them are receiving medical care at public expense. According to the Social Security Bul. letin of August 1953 and the 1951 annual report of the then Federal Security Agency, an annual amount of about $70 million was spent on public-assistance grants and medical care for blind people, including administrative costs. While we introduce this figure to impress you with the dollar cost of blindness, we must, however, for the record, remind you that the average grant of $54.02 per month is far from adequate and if our Government could possibly afford it, this monthly grant should be materially increased.
In order to make it possible for most of the estimated employable blind of 78,500 to become actually employable, our Federal and State Governments are spending, annually, about $12 million to admin