M.C. Migel and Robert Irwin, two of the three principals in the venturesome new undertaking, were now on stage. The third principal, Helen Keller, waited in the wings. Before the curtain rises on Act One, some program notes:
What, exactly, is blindness? In spite of efforts extending over many decades, this seemingly simple question has never found a simple answer.
The conditions commonly subsumed under the heading of blindness actually fall into three categories: total blindness, legal blindness, and functional blindness.
Total blindness was always easily understood. It was sightlessness—the absence of any light or image perception whatsoever.
Legal blindness was defined in a formula adopted in 1934 by the American Medical Association, subsequently incorporated in the Aid to the Blind title of the Social Security Act of 1935, and further embodied into law in federal and state statutes providing various special services and benefits for blind persons. Because it is the eligibility criterion for so many tangible benefits, from welfare assistance to income tax exemptions, legal blindness is sometimes referred to as economic blindness. The basic definition establishing it was this:
Central visual acuity of 20/200 or less in the better eye with corrective glasses or central visual acuity of more than 20/200 if there is a visual field defect in which the peripheral field is contracted to such an extent that the widest diameter of the visual field subtends an angular distance no greater than 20 degrees in the better eye.
What this means in ordinary language is that a person is deemed legally blind (a) if, even with perfectly fitted eyeglasses, his better eye can see no more at a distance of 20 feet than a person with normal vision can see at a distance of 200 feet; and/or (b) if his central visual field is so restricted that he can only see objects within a 20-degree arc, in contrast to the visually normal person's ability to see objects in a much wider arc above, below, and on each side of the line of sight.
Measurements of visual acuity—the ability to discern detail—are made on the familiar Snellen Chart, whose printed letters are so sized and shaped that the ability to read a certain line from a distance of 20 feet denotes normal vision, designated as 20/20. The person who from that distance is unable to see more than the single large letter which is the chart's top line is said to have 20/200 vision. This is the entry point of legal blindness.
Totally blind persons, of course, fit within this definition of legal blindness. So do those who can distinguish between light and darkness but have to bring objects within an inch or two of their eyes in order to identify them. So do those who have "tunnel" or "gunbarrel" vision and can see objects straight ahead of them but not on either side. So do those persons who have only lateral vision.
All such persons—and in 1972 estimates of their number in the United States ranged from 441,000 to 1,700,000—have sufficiently severe visual impairment to function as legally blind, even though many included in the higher estimates are not officially classified as such.
According to a study made in 1972, an additional 4,700,000 Americans had lesser degrees of visual impairment which rendered them functionally blind, i.e., unable to read ordinary newspaper print even with perfectly fitted eyeglasses. "Partially sighted" is a term sometimes used to describe people with these lesser degrees of visual disability.
One reason for the great disparity in blindness estimates is that no agreement has ever been reached on a standard definition that would encompass all persons severely handicapped by visual loss. At least 16 different definitions are used in the United States, according to one authority. The official legal definition of blindness tends to be narrowly interpreted in some states, loosely interpreted in others. It is mandatory in some situations, such as eligibility for financial aid, but not in others, such as eligibility for vocational rehabilitation training. Where education of children is concerned, it has been gradually abandoned in favor of visual efficiency, which includes many factors other than the two specified in the legal definition.
Over the years, ophthalmologists have repeatedly criticized the weaknesses of the legal definition. Dr. Richard E. Hoover, chief of ophthalmology at the Greater Baltimore Medical Center, called it "inadequate, unrealistic, inequitable, prejudicial and restrictive," noting that the definition takes into account only two visual characteristics—distance acuity and central fields—while ignoring other factors that affect the ability to see, such as peripheral fields, muscle balance, and depth perception. The definition calls for separate measurements of each eye but ignores the performance of both eyes together. It does not allow for individual differences in ability to use residual vision, nor does it distinguish between the degree and type of vision required for vocational pursuits and that needed for ordinary activities of daily living.
Equally serious is the fact that there are no provisions to insure standardized measurement and reporting, even of the two characteristics specified in the definition. It is thus entirely possible for different ophthalmologists examining the same person to report different findings.
In the absence of agreement on what constitutes blindness, how has it been possible to make even an educated guess as to how many blind or visually impaired people there have been at any given time?
Among the early tasks assumed by the American Foundation for the Blind was devising, in cooperation with the National Society for the Prevention of Blindness, a standard report form for eye examinations that could serve as a basic tool. That form, a single sheet of paper, had some astonishing effects. As various schools for the blind were persuaded to try it out, professional examinations uncovered scores of children whose sight could be restored or substantially improved through surgery. Relaying this information to Helen Keller in 1933, Robert Irwin wrote: "Now we are confronted with a situation where there is no money to pay for these operations, and no local eye specialist who is willing to perform the operations without pay. Of course we will work it out somehow. … "
One way or another, it was indeed worked out. Many years later, Senator Jennings Randolph recalled that during this period, when he was district governor of the Lions Clubs in West Virginia, the Lions paid for the hospitalization of such children, while a local eye surgeon, Dr. Jay Blades, performed all of the operations free of charge. Comparable solutions were found in other states.
The jointly sponsored Committee on Statistics which developed the eye examination report form also worked out a scheme for standard classifications of causes of blindness, likewise in the interest of laying the groundwork for uniform statistics. The classification schedule, as later revised, was ultimately adopted internationally.
Once these statistical tools had been shaped, the committee, headed for three decades by the eminently qualified social statistician Ralph G. Hurlin, secretary of the Russell Sage Foundation, tackled the task of constructing a formula for estimating the nation's blind population. The formula it evolved, which has been the fundamental yardstick of blindness prevalence in the United States for many years, was the basis for the lowest figure in the range of 1972 estimates. At no time did it ever pretend to produce more than a reasonable guess. A brief description of the formula and its origin will illustrate why this is so.
Under the Hurlin formula, the extent of blindness in the nation is estimated through the use of a rate originally derived from one particular state in which a reliably complete register of blind persons was maintained. This basic rate is then weighted for each of the other states by three social factors: (1) the proportion of aged persons in the state's population (because the older people are, the more susceptible they are to severe visual loss); (2) the state's ethnic composition (because non-white groups tend to receive less eye care); (3) the state's infant mortality rate (because the same inadequate health programs which produce higher-than-average infant death rates tend to result in higher-than-average blindness).
The state whose blindness register provided the basic data to which these estimates were initially anchored was North Carolina. Why North Carolina? In 1937, when the Hurlin formula was first worked out, there were a number of states which maintained registers of their blind residents. Few of these registers were either up-to-date or complete, but the Tar Heel State's was relatively trustworthy because North Carolina had been the scene, just a few years earlier, of an exceptional effort to make a comprehensive census of its blind residents. Such a census was vital in persuading the state legislature to establish a commission for the blind, and a commission was urgently needed. North Carolina was then the only state that, apart from its 90-year-old school for blind children, did not have a single voluntary or public resource for blind adults.
In the circumstances, when George E. Lineberry, superintendent of the state school for the blind, asked for help in building the case for a state commission, his request was given top priority. Charles Hayes and the Foundation's staff devised and executed a meticulous plan for surveying the counties comprising the largest cities in the state. In each county they organized a committee whose membership included representation from every large or small organized body that could be found. Members of the field staff visited the selected counties, conducted public meetings to explain why the survey was being made, and armed the local committees with census forms to be filled out for every blind person located.
Invariably, the field team was met in each county with the assertion that only a handful of its residents were blind. Invariably, too, the facts proved otherwise. In one county, officials estimated the blind population to be 35; the very first sweep located 218. A second sweep, in which six of the major counties were subjected to a house-by-house check, utilizing a crew of workers employed under a Civil Works Administration program, uncovered many additional cases.
As a result of the year-long project, the legislature established a state commission and appropriated $25,000 for its first year's operation; three voluntary county associations and a statewide association for the blind were organized; a sheltered workshop was set up; home teachers were employed; a committee for the prevention of blindness was established; Lions Clubs were activated to lend their assistance.
From a national standpoint, the significance of the North Carolina census was that its findings demolished the 1-per-1,000 rule of thumb that had long been used for estimating the prevalence of blindness in the United States. Testifying before a Congressional committee some years later, Dr. Hurlin said that his 1937 estimates, based on the North Carolina census, proved the extent of blindness in the nation to be "from two to two-and-one-half times as great as was commonly supposed."
Additional pilot studies, made in other states, caused further modifications in the formula. For the 1940 census Dr. Hurlin arrived at a blindness rate of 1.75 per 1,000, yielding a national total for that year of 230,000. Ten years later, the formula yielded a higher rate, 1.98 per 1,000, giving a total of more than 308,000. For the 1960 census, the blindness rate was estimated to be 2.14 per 1,000, and the total 385,000. The 1972 estimate of 441,000 blind persons was calculated at the same rate, taking into account the nation's population growth during the preceding dozen years.
Since the decennial federal census presumably reached every household in the nation, could it not have been used to take a count of the blind members of those households? Such an effort had been made for an entire century, and it had failed. Beginning with the census of 1830, enumerators were instructed to ask about blindness, but there were so many deficiencies in the method (enumerators forgot to ask, families chose not to acknowledge) that the findings could not be taken seriously. For example, the census of 1920 yielded a national figure of 57,444 blind persons. This, it was shown immediately thereafter, was 20,000 less than the total reported in a special study, also made by the United States Census Bureau, for the very same year. Leaders in work for the blind challenged both estimates, believing the actual figure at that time to be in the neighborhood of 100,000. Following the 1930 census, which proved equally unsatisfactory in yielding a reliable figure, the Census Bureau decided to drop the blindness item from subsequent enumerations. It was never reinstated.
An amusing sidelight on the questionable validity of census figures was cited by Gabriel Farrell in The Story of Blindness. The census of 1880, he wrote,
reported 48,929 blind persons. This was double the number enrolled in the report of ten years previous, which was 20,220. Workers for the blind were concerned that blindness might have doubled in a decade. A possible explanation for the doubling, however, was the fact that [the 1880 census] enumerators received a bonus of five cents for each case of blindness reported!
There is no equally transparent explanation for the fact that more contemporary efforts to arrive at a definitive figure have also produced amazingly wide discrepancies. Whereas the 1960 revision of the Hurlin formula gave a legal blindness rate of 2.14 per 1,000 of population, a national health survey made by the United States Public Health Service in 1957–58 put the prevalence rate of "severe visual impairment" at 5.17. A repeat national health survey two years later gave an even higher rate of 5.6, and in 1963–65 the same survey came up with a rate of 6.6 per 1,000, placing the number of Americans with severe visual impairments at 1,227,000.
In 1962 an effort was begun to pinpoint data on incidence (new cases) as well as prevalence (existing cases) of blindness. The system used was designated the Model Reporting Area for Blindness Statistics (MRA); it was initiated by the National Institute of Neurological Diseases and Blindness and transferred in 1969 to the just-created National Eye Institute. MRA started with 11 states which voluntarily agreed to update and maintain their blindness registers, using uniform definitions of blindness, uniform classification of causes, and agreed-upon procedures for registering persons certified as blind by ophthalmologists or optometrists. As of 1972 there were 16 participating states contributing their findings to the federal body.
The most frequently cited figure for incidence of new blindness during the Sixties was that 30,000 persons lost their sight each year in the United States. A much higher rate was projected in 1971 by the director of the National Eye Institute, who predicted that 50,000 persons would become blind within the year and 500,000 within the next decade.
In only one respect have all the surveys found general agreement. The crucial factor affecting both incidence and prevalence of blindness is the increasing longevity of the American population. More than 50 percent of the nation's visually impaired persons are over sixty. In 1967 a specialist in biometrics projected an "army of the aged blind" by 1985.
The realistic likelihood is that it will never be possible to obtain an exact count of the nation's blind population, particularly the geriatric blind. One reason for this is that an aging person whose blindness is caused by diabetes is more apt to be reported as a diabetic than as a blind person. Nor do public records supply a reliable index. In many states, needy blind persons receiving public welfare assistance who reach the age of sixty-five are automatically transferred from the Aid to the Blind roster to the Old Age Assistance category. There is also the factor of "the hidden blind"—isolates who desire no care and avoid contact with agencies serving blind persons.
Blindness would be easier to define and count if it were a condition stemming from a single cause. But there have been scores of causes, and while some were eliminated through prevention or cure or changing conditions, others appeared to take their place.
One of the most dramatic crusades against blindness was already well along the road to successful completion by the early Twenties. This was the fight against ophthalmia neonatorum—popularly called "babies' sore eyes"—an inflammation in the eyes of newborn infants usually caused by the presence of gonorrheal infection in the mother's birth canal.
The simple precaution of routinely putting drops of an effective prophylactic, silver nitrate, into the eyes of newborn infants halted the onslaught of this disease, which at one time was responsible for as much as 30 percent of all blindness in children. A 20-year campaign to introduce and enforce state laws mandating the use of such drops by doctors, nurses, or midwives brought about a steady decline, year by year, in this particular cause of blindness.
Extensive public education campaigns were launched to secure enactment of the needed laws. This was no easy feat: mention of venereal disease was taboo in polite society, and it took courage for editors to allow discussion, even in euphemistic terms, of the reason so many infants suffered loss of sight. Helen Keller, who authored articles on the subject in the Ladies' Home Journal in 1907, credited the magazine's editor, Edward Bok, with a key role in penetrating the barrier of public ignorance.
State and local agencies took aggressive stands. In 1910 the Massachusetts Charitable Eye and Ear Infirmary published a study of 116 cases of infants blinded by ophthalmia neonatorum:
In practically every instance the cause of the child's disablement is failure on the part of the physician to recognize and give warning of the serious nature of the disease. … The general practitioner has yet much to learn of the disease, and the parents know nothing of it. Upon these two groups—the practitioners and the parents—the baby must depend for the gift of sight.
The report made another trenchant point: the venereal disease that produced ophthalmia neonatorum could also kill, and some of the infants treated in the Infirmary did not survive.
The formation, in 1908, of what later became the National Society for the Prevention of Blindness was a direct outgrowth of the need to carry on a nation-wide fight against "babies' sore eyes." Progress made in halting the disease was reflected in yearly statistics showing how many of the pupils newly admitted to schools and classes for the blind were its victims. In the 1907–08 school year, the percentage was 26.5; ten years later it had dropped to 15.2. With the passage of another decade, the percentage in 1927–28 went down to 9.1, from which point it slowly tapered off. That cases of ophthalmia neonatorum crop up even in modern times can only be ascribed to inexcusable carelessness.
The other venereal disease, syphilis, was at one time also responsible for a substantial share of blindness. In the United States, as in most other nations observing modern health standards, medical progress in the treatment of syphilis with antibiotics has brought about a noticeable improvement, but venereal disease remains responsible for considerable blindness in less developed areas of the world. The disparity among nations is even more marked in relation to trachoma, an infectious virus disease endemic in the Middle East and in some areas of Asia and Africa, but now rarely encountered in the United States due to stringent enforcement of immigration regulations which bar admission of persons with trachoma symptoms.
The advance of medicine has helped abate or eliminate the spread of several other disease entities—including tuberculosis, smallpox, typhoid, and scarlet fever—which formerly gave rise to blindness in American children and adults. Improved surgical techniques have also played a part in mitigating, and sometimes reversing, visual defects. Most notable among the successful surgical interventions are corneal transplants, the use of laser beams in treating detached retinas, and simplified cataract extractions.
Offsetting the progress made in reducing the incidence of blindness due to infectious disease are several new factors. Degenerative processes that accompany aging produce a high rate of blindness in the form of cataract, glaucoma, and retinal deterioration. Diabetes, which once killed its victims within a few short years, has been brought under control with insulin; diabetics live longer, but simultaneously have a longer exposure to the risk of blindness that can be a result of the disease. In the Sixties and Seventies, diabetes accounted for nearly 15 percent of all new cases of blindness. Almost exactly the same percentage was attributable to glaucoma, while just under 14 percent of new blindness derived from senile cataracts.
Where the very young are concerned, epidemics of blindness intermittently crop up, seemingly out of nowhere, and leave a lamentable legacy of visual impairment before the causes are discovered and proper preventive measures introduced. Such was the case with retrolental fibroplasia, which left some 12,000 children blind during the Forties and up into the early Fifties, when its astonishing cause was identified. And such was the case with the rubella (German measles) epidemic of the mid-Sixties. Not only blindness but many other grave impairments, including deafness, heart defects, and mental retardation, were discovered in newborn infants whose mothers had contracted rubella during the early months of pregnancy. Some 30,000 multihandicapped children were born during that epidemic; an estimated 5,000 to 6,000 of these numbered blindness among their impairments.
Epidemics of German measles tend to arise at approximately seven-year intervals. In the late Sixties and early Seventies, the medical and public health professions mounted a sweeping immunization campaign in what, as this is written, appears to have been a successful effort to protect pregnant women from exposure to the rubella virus before the arrival of the next epidemic cycle.
But there remain the constants. These include the hereditary or congenital eye defects, most common among them glaucoma and retinitis pigmentosa. Safety precautions manage to hold industrial accidents in check, but the traffic casualties of a nation on wheels, and the social casualties of a society increasingly wracked by violence and crime, tend to counterbalance them. And of course there is the most tragic accident of all: war.
To serve the nation's visually impaired men, women, and children there existed in the United States in 1972 several hundred voluntary and tax-supported bodies. Depending on how they were counted—whether units or branches of multi-service agencies were considered separate or subsumed under the parent organization—the total was put at slightly over 400 or just under 800. The gross expenditure of these organizations, in whichever way they were counted, was calculated to have been $469 million for the fiscal year 1967. According to the government-sponsored study which produced this estimate, about 57 percent of this sum ($268 million) was federal money, 29 percent ($131 million) came out of state tax funds, and the remaining 14 percent (just under $70 million) was spent by 274 voluntary organizations.
A functional breakdown of the $469 million total ascribed the expenditure of $270 million to income maintenance, $69 million to education, $48 million to vocational services, $10 million to residential care, $2 million to research, and more than $70 million to a great variety of technical, personal, and social services ranging from braille and recorded books to dog guides, mobility training, rehabilitation, social and psychological counseling, aids and appliances, recreation, camping, etc.
One way to measure the change in the lives of blind Americans during the past half century would be to compare these figures with the less than $31 million reported as the nation's total expenditures for services to blind persons in 1919.
One final program note. Only one legally blind person in ten is totally without sight. Modern practice is careful to make a semantic distinction among types of visual deficiency, reserving the term "blindness" for total or nearly total absence of sight and using "visual impairment" to denote the other degrees of visual loss which are severe enough to qualify as legal blindness. However, for most of the period covered by this history, "blindness" was the term used for all types of serious visual handicap. Considerations of historical accuracy require that it be so used in this book.
