OVERVIEW

For those born in the last half of the 20th century, it might appear as though people with disabilities have always been treated with kindness and a helping hand. Historically, this indeed was sometimes the case in certain parts of various countries by certain entities such as the church and other nonprofit organizations. Some cultures even revered people with disabilities and held them in high esteem. Gallagher (1995), for example, stated that among the Dahomeans of West Africa, infants born with disabilities were believed to be the result of supernatural forces and said to be good luck in some instances. Indeed, adults with deformities were often selected as state constables. In addition, among the Chagga of East Africa, children with disabilities were believed to satisfy evil spirits, which in turn safeguarded others from misfortune (Obermann, 1965).

Unfortunately, these views were but isolated incidences. The history of treatment and attitude toward people with disabilities has often been marked by societal fears, intolerance, ambivalence, prejudice, and ignorance regarding disability. Taken in total, throughout the ages, people with disabilities have been subjected to infanticide, starved, burned, shunned and isolated, strangled, submerged in hot water, beaten, chained and caged, tortured, gassed, shot, sterilized, warehoused and sedated, hanged, and used as amusement (Chubon, 1994; Gallagher, 1995; Sand, 1952). Surprisingly, many of these practices continued up until the end of World War II, and although this inhumane treatment was drastically curtailed in the last half of the 20th century, atrocities toward people with disabilities continue in various parts of the world today. Gostin (2008) indicates that despite the 1991 United Nations adoption of Principles for the Protection of Persons with Mental Illness (World Health Organization, 2005), as well as the 2006 United Nations Convention on the Rights of Persons with Disabilities, people with mental illness throughout the world are still treated inhumanely and are living under deplorable conditions, including in prisons, on the streets, and in asylum-type settings.

Exactly why people with disabilities have been historically treated so inhumanely is a complex question with many answers; however, most notably, they are devalued and perceived as less than human (Gostin, 2008). Depending on the era, infants with disabilities were put to death for economic or spiritual reasons (Chubon, 1994). Among the Jukun of the Sudanese Kingdom, children with deformities were abandoned in caves or bushes because they were believed to be possessed by evil spirits. Plato and Aristotle sanctioned infanticide for eugenic and economic reasons, believing that infants with disabilities would burden the system’s resources (Gallagher, 1995).

EARLY CIVILIZATION (BCE–CE 500)

Some evidence exists that people with severe disabilities sometimes survived adulthood but still not a normal life expectancy during early civilizations (Lowenfeld, 1975). Archeological and anthropological skeletal finds suggest that people with spina bifida lived during the Neolithic period (Sigerist, 1951). Venzmer (1968) reported evidence of disability during the Old Stone Age, again with the remains of people with spina bifida being found as well as osteomyelitis, congenital hip dislocation, and spinal tuberculosis. With physically disabling conditions such as these, it is obvious that even back then, it would seem likely that loved ones must have taken care of their disabled members. As no evidence of adaptive aids such as wheelchairs or walkers exists, it is believed that nondisabled family members may have carried their disabled loved ones from place to place.

Although it appears that some people with disabilities survived during these earlier times, because of the lack of medical understanding and technology, people with congenital disabilities either died of complications such as infections shortly after birth or were killed for economic, eugenic, or religious reasons (Deutsch, 1949). The Greeks believed the body and soul were one entity and that a blemish to the body (disability) also signified a blemish to the soul (Dickinson, 1961). Infanticide of infants with physical disabilities was practiced for eugenic reasons as advocated by Plato, and economic reasons as sanctioned by Aristotle (Deutsch, 1949). The body and soul connection by the Greeks also led to religion-based fears, as many believed that a disability signified punishment from God for having sinned (Turner, 1987). This belief was especially true for people with mental illness who were believed to be suffering from demonic possession. The Greek physician Hippocrates, however, rejected this premise and instead believed that the cause of mental illness was because of environmental reasons and brain impairment (Coleman, 1964). As a result, Hippocrates established the first sanitarium for what turned out to be well-off families who had a member with mental illness. Other people with mental illness did not fare as well and were often starved, chained, whipped, caged, or put to death (Sand, 1952). For both the Greeks and Romans, infants with disabilities were routinely killed or abandoned. Greeks who became disabled later in life, however, were permitted to live and often became beggars, whereas some people with mental retardation were owned by wealthy Romans for amusement as court jesters (Kanner, 1964).

Sigerist (1951) identified four differing attitudes toward disability during this early period. The ancient Hebrews viewed disability as punishment from God for having sinned. The Greeks considered disability a matter of economics and social status, and thus people with disabilities (who often were beggars) were viewed as socially inferior; however, the Christians viewed disability as a curse or as being possessed, thereby needing prayer and charity. Today, despite the fact that many view disability primarily in a clinical sense as an organic chronic illness or disease, there are still others who believe disability to be caused from having sinned.

MIDDLE AGES (600–1500)

The Middle Ages were dominated primarily by the principles of Christianity. The Scripture in the Old Testament linked sin against God with chronic illness and disability (Gallagher, 1995). A reference to people with disabilities found in Leviticus 21:18 that states, “he is unclean, and thus may not be a priest, or even approach the altar” conveys an unfavorable attitude about disability. In Samuel 5:8 it is written that “The blind and the lame shall not come into the home.” Byrd (1990) enlisted the assistance of pastors in Alabama to cite the number and type of listings relating to disability in the Bible. The top five terms and their frequency of use were “blind” mentioned 93 times, “sick” cited 88 times, “afflicted” cited 88 times, “leprosy” noted 67 times, and “drunken” cited 50 times. Ultimately linked from the Bible to the present day is the notion that a person’s disability can be healed if he or she has faith in God and repents of his or her sins. Gallagher (1995) cites the biblical passage where Jesus states to a blind man, “I have healed you, go and sin no more,” implying, or at least interpreted as, sinning had caused the blindness.

Medicine and the medical profession were poorly regarded because physicians were not well trained and often ineffective in treating people with various diseases. The public opposed human dissection, and thus medical knowledge and understanding slowed considerably during this period (Rubin & Roessler, 1995). Chubon (1994) noted that medicine became a moral issue because disability continued to be largely viewed as a punishment from God. Physicians were replaced by monks and priests, whose initial practices were humane. People with disabilities were treated in monasteries and hospitals where methods such as exorcism, prayer, incantations, magical herbs, and laying on of the hands were used (Obermann, 1965). Despite best efforts, the monasteries and the hospitals were too few to meet the needs of the poor, the homeless, and those with disabilities.

With these noble efforts to treat people with disabilities, Christianity’s reach only went so far. Lowenfeld (1975) reported that the German and Slavic people of Central Europe continued to abandon and kill people with disabilities who could not care for themselves. As the plight of people with disabilities was viewed as God’s punishment, no attempt was made to find out the underlying cause of the disability. Coleman (1964) noted that humane treatment of people with disabilities gave way to more inhumane treatments once again as the Middle Ages progressed. People with disabilities were feared and tortured, whipped, immersed in hot water, and starved to rid the person’s body of the devil (Safilios-Rothschild, 1970). It was indeed contradictory for the Catholic Church to be compassionate and benevolent to people with disabilities on the one hand, and yet at times be inhumane and cruel on the other. These human behaviors likely reflect individual interpretations and personal attitude differences among people rather than the will of the Catholic Church itself.

THE RENAISSANCE PERIOD (1500–1700)

During the period between 1500 and 1700, attitudes began to change regarding disability and treatment modalities. Coleman (1964) noted how the view of people with mental illness as possessed slowly changed to them being viewed as sick or ill. Chubon (1994) stated that knowledge regarding the cause and symptoms of disability and illness began to be studied again, and physicians were allowed to dissect and study human cadavers. People with mental illness and mental retardation began being sent to the ever-growing number of asylums rather than monasteries. The asylums, unfortunately, offered no treatment or therapy, and instead functioned as prisons, some of which chained and caged noncompliant or acting-out patients (Coleman, 1964). During the great witch hunts between 1480 and 1680 reported in the Malleus Maleficarum book known as The Hammer of Witches (Kramer & Sprenger, 1971), it is estimated that between eight and 20 million people, mostly women, were tortured and put to death as witches in Europe. A good portion of this population often had a mental illness, or a visible disability, or a disfigurement. The book identified how to spot witches by their impairment or by giving birth to children with impairments.

Despite some of the inhumane treatment that continued for people with mental illness and mental retardation, there were some positive steps toward rehabilitating people with disabilities during this period as well. Obermann (1965) cites how people who were deaf were taught how to write during the 15th century and later were taught how to speak and read as well. Sand (1952) additionally notes how people who were deaf and blind were taught how to communicate by forming letters on their arms.

EARLY AMERICA (1620–1800)

For the settlers in the 13 colonies, disability was perceived as God’s punishment. People with mental illness or related acting-out behavior were often persecuted and burned or hanged like witches. For the most part, however, disability was viewed as a moral problem, often bringing disgrace to families who had a disabled loved one (Chubon, 1994). Physicians continued to be trained poorly or were self-trained and often treated illnesses such as influenza, yellow fever, and typhoid fever by having patients drink different concoctions (Miller, 1966). This was also a period where “bleedings” (boring a hole in the head to release poisons from fever) occurred (Weisberger, 1975). People with mental illness from wealthy families were typically kept at home if they were nonviolent; however, if they were violent, they were locked up and essentially treated as criminals (Deutsch, 1949).

In 1752, Benjamin Franklin aided the Quakers in establishing the first colonial hospital in Philadelphia (Miller, 1966). Although this hospital was designed to treat all disorders, including mental illness, the quality of care was lacking (Grob, 1973). A second hospital was built in 1791 in New York. A few years later in 1798, the first Marine Hospital service was opened to treat merchant seamen with disabilities, and this eventually evolved into the U.S. Public Health Service (Singer, 1928). In addition, during the 1760s and 1780s, the first three medical schools in the United States were opened. Dr. Benjamin Rush trained some 3,000 doctors during this period and believed that disease could be driven from the body. Rush also believed in and practiced bleeding as a form of treatment for fever.

THE INDUSTRIAL REVOLUTION (1790–1870)

The Industrial Revolution between 1790 and 1870 brought some interesting developments concerning people with disabilities. First was the changing infrastructure of the United States as urbanization began to flourish, leading to the building of more hospitals. This also led to greater advancements in treating people with various illnesses. Second, there was mechanization and the development of factories, primarily in these urban areas. Factory working conditions were often likened to those of present-day sweat shops, whereby workers were given few breaks, had to meet stringent quotas, and were supervised in a coercive, authoritarian manner (Cheit, 1961; Chubon, 1994). Indeed, industrial capitalism was geared to having healthy able-bodied people able to work long hours in mass production lines, thereby excluding people with mental and physical limitations of these types of work environments (Turner, 2006).

With industrialization came a new type of prevalent disability: injured workers. Workers who were injured on the job were often customarily fired if they could no longer produce, leaving them without any recourse but to sue their employers as workers’ compensation legislation did not yet exist. Historically, the first workers’ compensation legislation was passed in Germany in 1884, Hungary in 1887, Great Britain in 1897, and in the state of Maryland in the United States in 1902 (Worrall & Appel, 1985). Workers’ compensation is best defined as an agreement between employer and employee, in that an employer automatically covers medical and wage replacement benefits for employees injured on the job, regardless of who is at fault. In turn, injured workers agree not to sue their employer. Before this legislation, however, employers virtually won all lawsuits brought against them by injured employees mainly because of three existing tort laws: the doctrines of “contributory negligence” (a worker contributed to his or her injury), “assumption of risk” (a worker knew the risks of the job and voluntarily did it anyway), and “fellow servant” (an injury occurred as the result of a coworker’s negligence). These laws most often heavily favored the employer, and the burden of proof was with the employee (Berkowitz, 1960; Cheit, 1961).

In other arenas, services for people with disabilities continued to improve. Thomas Gallaudet, a theologian by education, became interested in working with the deaf population and studied educational methods in teaching people who were deaf in Europe (Holbrook, 1957). Later, with the help of Congress, Gallaudet raised money to open the first U.S. school for educating people who were deaf in Hartford, Connecticut, in 1817. Similarly, for people who were blind, the first attempts to educate and vocationally prepare this population occurred in Paris in 1784 by Valentin Hauy. Between 1791 and 1827, six other institutions for people who were blind were opened in the United Kingdom (Nelson, 1971). The first institution for the blind was eventually opened in the United States in 1832 by Dr. Samuel Howe. By 1887, Howe’s success and his public relations efforts led to the opening of similar schools in over 30 states (Holbrook, 1957). In France, there were about 60 schools for deaf children by 1870, primarily run by Catholic congregations, starting with the two oldest and state-protected schools in Paris and Bordeaux founded in 1760. This proliferation of deaf schools stemmed from the fact that there were believed to be twice as many deaf children as there were blind (Buton, 2006). Interestingly, the majority of Parisian teachers were deaf themselves. Although the majority of the deaf population favored teaching French Sign Language (FSL), French education administrators pushed for teaching deaf students oral methods, which was ultimately passed by the Milan Congress in 1880 and immediately introduced that year. As a result, the majority of deaf–mute teaching candidates were banned until FSL was finally reimplemented in France in the 1990s.

People with mental illness during this time did not fare as well. Mental illness was not only misunderstood and feared by many people, but it was also seen as incurable (Rubin & Roessler, 1995). In the United States, Dr. Benjamin Rush advocated for the humane treatment of people with mental illness by surrounding them with pleasant conditions and conversation with others. Rush’s plea, however, went largely unacknowledged as people with mental illness continued until recently (the 1960s) to be institutionalized with little or no psychological treatment and often under brutal living conditions. It was only after researcher Dorothea Dix investigated over 100 of these psychiatric hospitals and made her findings public that more humane treatment and living conditions came into effect (Holbrook, 1957). By 1860, Dix’s impact led many state legislatures to provide funds to build more hospitals that provided humane treatment to people with mental illness. Unfortunately, deinstitutionalization has resulted in thousands of people with severe mental illness being confined in prisons or homeless in the streets without any assistance of any kind and no access to medication or counseling (Gostin, 2008).

Before the latter half of the 19th century, most people with physical disabilities such as muscular dystrophy and spinal cord dysfunction died because of various complications such as pneumonia and infections. This was the case until the development of antiseptic surgery by Joseph Lister in 1865, which greatly increased the survival rates (LaRue, 1972). Obermann (1965) noted that the first three hospitals for people with physical disabilities were opened between 1863 and 1884 in Philadelphia and New York. In 1893, the Industrial School for Crippled and Deformed Children was established in Boston, representing a first in the United States to vocationally train this population for jobs. Similar schools flourished after the polio epidemic of the 1940s (Chubon, 1994).

As developments for people with disabilities continued to slowly improve in most industrialized countries, there was concomitantly a growing philosophical and far-reaching issue that began to emerge. People with various disabilities had experienced differential types of treatment depending on what their disabilities were up until this point. How people viewed other people who were perceived as weak or different became clear in the years shortly following Darwin’s infamous 1859 book, Origin of Species. Darwin’s work set the stage for a barbaric movement that unfortunately continues in some parts of the world today.

THE HISTORY OF EUGENICS (1840–1950)

Smart (2009) noted that Sir Francis Galton, Karl Pearson, and Sir Ronald Fisher were all eugenicists and statisticians in academe. Galton originally coined the term eugenics, which is defined as “the study of hereditary improvements of the human race by controlled selective breeding” (Smart, 2009, p. 4). Galton essentially believed that society could be ruined if less intelligent people outreproduced those of greater intelligence, and espoused that government should encourage the rich to reproduce and prevent the less intelligent poor from doing so. Galton and his colleagues were statisticians who developed statistics still used today concerning the normal distribution curve and what is considered to be the “norm.” Their books, Galton’s Hereditary Genius (1869) and Inquiries Into Human Faculty and Its Development (1883), as well as Fisher’s Genetical Theory of Natural Selection, all delved into the concept of natural selection and selective breeding. Darwin’s 1859 Origin of Species specifically dealt with natural selection but addressed the concept only as it pertained to plants and animals. Gallagher states, “Darwin held that the members of a species will have various and sundry variations and that these variations will, in one way or another, influence the ability of the individual member to survive” (Gallagher, 1995, p. 44).

Twelve years later in 1871, Darwin’s focus expanded from plants and animals to humans, with his second book, titled The Descent of Man, in which he stated:

One of Darwin’s followers, Herbert Spencer, actually coined the term survival of the fittest and applied Darwin’s principles specifically to humans. In Spencer’s 1884 book titled Social Statics: Or the Conditions Essential to Human Happiness, he stated that “under the natural order of things society is constantly excreting its unhealthy, imbecile, slow, vacillating, faithless members” (Spencer, 1884, p. 355). Both Spencer and Darwin’s principles, along with Mendelian laws of heredity and genetics, became extremely popular with the public, politicians, academics, and physicians regarding the ideal order of the biological world (Gallagher, 1995). Fine (1956, as cited in Rubin & Roessler, 1995) noted that Spencer believed, “it was better for society to allow the poor and weak to perish than to sustain their existence and encourage their multiplication through government-supported public relief and health programs” (Rubin & Roessler, 1995, p. 17).

Spencer’s Social Darwinism philosophy increased in popularity. It was an ethnocentric view advocated almost exclusively by White Anglo-Saxons of North European descent (Alemdaroglu, 2006). They believed that the wealthy and powerful were genetically superior to the poor and that poor people did not have the genetics or ability to ever be successful; hence, failure breeds failure. They believed welfare programs propagated failure and were dangerous to the health of the human race (Gallagher, 1995). As this movement grew, social scientists and others aiming to validate Social Darwinism held conferences and published numerous books and periodicals on the topic.

The Social Darwinism philosophy was perhaps no better exemplified than that found in Richard Dugdale’s 1874 study where he pieced together the family tree of the Jukeses and Kallikaks. Dugdale traced six generations of the Jukes family (but failed to take into account those members who succeeded or did well) and found that of the 709 Jukes or those married to them, 76 were convicted of crimes, more than 200 collected charity or relief benefits, 128 were prostitutes, and 18 owned houses of prostitution (Gallagher, 1995). The Kallikak family situation was somewhat different but also supposedly strengthened Spencer’s philosophy. During the Revolutionary War, Martin Kallikak had an illegitimate son by an apparently “feebleminded” girl. Although today considered a derogatory term, feeblemindedness during that era referred to individuals who were developmentally disabled. The son, who came to be known as “Old Horror,” spawned 480 descendants over several generations, 143 of whom were classified as feebleminded, 82 died in infancy, 33 were prostitutes, 24 were alcoholics, three had epilepsy, and three were criminals (Gallagher, 1995, p. 49). Kallikak later married a Quaker girl from a reportedly good family, and many of their descendants became doctors and lawyers. Although many of the Social Darwinism advocates were somewhat in agreement as to who the weaker of the species were (i.e., criminals, prostitutes, and people who were blind, paralyzed, developmentally disabled, mentally ill, or had epilepsy), there remained some controversy as to who else was considered hereditarily unfit.

In 1900, Duncan McKim came forward with a book titled Heredity in Human Progress, and essentially claimed that heredity was responsible for “insanity, idiocy, imbecility, eccentricity, hysteria, epilepsy, the alcohol habit, the morphine habit, neuralgias, nervousness, Saint Vitus dance, infantile convulsions, stammering, squinting, gout, articular rheumatism, diabetes, tuberculosis, cancer, deafness, blindness, deaf-mutism and color blindness” (cited in Gallagher, 1995, p. 50). McKim’s views began to show the confusion in thinking as to who the weaker section of the species was.

Several years before this, two new medical procedures, salpingectomy (tying a woman’s fallopian tubes) and vasectomy (tying the vas deferens of the male), were found to be an “effective and humane” way of sterilizing individuals at the time. Around the same time in 1896, Connecticut became the first state to forbid people considered to be “feebleminded, imbeciles or having epilepsy” to marry or have sexual relations. Anyone breaking this law could find themselves facing a 3-year prison sentence. Other states followed suit with similar legislation and indeed expanded the list of disabilities to include people believed to be “insane, syphilitic, alcoholic, and certain types of criminals” (Haller, 1963, p. 47). Kansas passed similar laws in 1903, New Jersey and Ohio in 1904, and Michigan and Indiana in 1905. Public support continued to grow for the program, which soon expanded into sterilization.

On another front, during the last 30 years of the 19th century, a different kind of social discourse was occurring in the United States involving ethnicity, gender, and disability. Coco (2010) described San Francisco as having passed what came to be known as the “ugly act” in 1867 to remove unsightly beggars, most of whom had disabilities, off the streets. The law passed in some western and midwestern states over the subsequent 40 years, with Chicago’s Municipal Code Ordinance of 1911 stating:

Coco (2010) further noted that when people with disabilities were picked up off the street, they were sent to the Cook County poorhouse in Chicago, which had deplorable living conditions. Records from 1884 showed that 30,130 disabled people resided in these poorhouses compared with 22,896 able-bodied people. Among those with disabilities, 4,885 were described as lame or crippled, 7,780 as simply “sick,” 2,600 with epilepsy, and 1,648 as paralytic. Astonishingly, the last “ugly law” arrest occurred in 1974, before it was finally repealed in Chicago later that year (Kraut, 2010).

The first federal Immigration Act of 1882 prohibited U.S. entry to any “lunatic, idiot or any person unable to take care of himself or herself without becoming a public charge” (Baynton, 2001, p. 45). The “public charge” terminology allowed immigration officials wide latitude for discriminating against undesirable immigrants, even when a visible disability could not be determined. The Act to limit people with disabilities was further strengthened in 1891 when the words likely unable replaced the term unable. The 1907 law was even more exclusive in denying entry into the United States for anyone judged “mentally or physically defective, such mental or physical defect being of nature which may affect the ability of such alien to earn a living” (Baynton, 2001, p. 45). The whole intent of the immigration legislation was to exclude not only the disabled but also other perceived undesirable groups as well. The 1924 Immigration Act saw the institution of ethnic quotas wildly and subjectively tied to disability. Almost half of southern and eastern Europeans were described by “experts” as feebleminded. Jewish immigrants were viewed as neurotic, Slavik immigrants described as slow-witted, and the Portuguese, Greeks, and Syrians viewed as undersized, of poor physique, and physical degenerates.

African American slaves had already experienced Anglo-Saxon prejudice some 70 years earlier as some writers alleged that African Americans were intellectually inferior and therefore should not be set free because they could not care for themselves. Some physicians such as John Van Evrie, Samuel Cartwright, Samuel Forrey, and John Nott during the 1840s and 1850s wrote in prominent medical journals linking disability to African Americans. Van Evrie warned about race-mixing leading to abnormal and deformed offspring, supposedly resulting in the deterioration of moral and intellectual endowments. Cartwright differentiated and attributed two types of mental illness toward African Americans: one that was accompanied by body lesions that decreased one’s desire to work and engage in mischief, and another that caused slaves to run away from their masters (Baynton, 2001, p. 177). Forrey, writing in the New York Journal of Medicine in 1844, noted higher rates of insanity, deafness, blindness, and idiocy among free slaves that was not captured in the census. Nott, a year earlier, had compared Caucasian women with Black women in the American Journal of Medical Sciences, indicating that White women possessed lily skin, silky hair, and a Venus form, whereas “Black women were wenches with odorous skin, a woolly head, and animal features” (Baynton, 2001, p. 178). Forrey also saw many peculiar similarities among the American Indians.

Unfortunately, American women were not spared from being deemed disabled and inferior as well. Cynthia Russett wrote that “women and savages, together with idiots, criminals, and pathological monstrosities were a constant source of anxiety to male intellectuals in the late 19th century” (as cited in Baynton, 2001, p. 41). A common belief (among White males) at the time was that women possessed physical, intellectual, and psychological flaws and were often irrational with a high rate of hysteria. Neurophysiologist Dr. Charles Dana noted that if women were enfranchised to vote, this would lead to an approximate 25% increase in insanity because of their delicate nervous stability.

Back in the early 20th century, countries such as Denmark, Canada, and Switzerland passed sterilization laws for people with disabilities and undesirables such as criminals. Similar to the United States and Germany, these movements were largely the agenda of well-educated, elitist middle- and upper-class Anglo-Saxons who held positions of power (e.g., attorneys, physicians, politicians, academics). Although the eugenics movement was very popular with some elitists in Europe, France, and Turkey in the ensuing years, the moves for sterilization and blocking marriages of certain groups were largely defeated by opposition from the church, the working class, and public health institutions in those countries (Alemdaroglu, 2006). In Turkey, forced sterilization and abortion are against Muslim values and beliefs, whereas most French eugenicists believed individuals’ environments played a key role in their upbringing, and therefore future offspring could have a better life if living conditions were improved.

Regardless of other international laws and religious beliefs, it was the state of Indiana that finally passed the first U.S. sterilization laws of criminals, imbeciles, and rapists in 1907. By 1926, sterilization laws had passed in 23 other states and were affirmed by the U.S. Supreme Court in 1927 (Kanner, 1964, as cited in Rubin & Roessler, 1995). Gallagher (1995) noted some confusion and variation regarding who qualified for sterilization from state to state, but that most state laws had expanded to sterilize people with mental retardation, mental illness, and epilepsy. Several states also sterilized people considered alcoholic, homosexual, drug abusers, and repeat criminals. The state of Missouri, for example, even sterilized chicken thieves. Although the sterilization laws in the United States peaked in the 1920s, the practice continued into the 1950s and remained on the law books of 17 states until the 1980s. It is estimated that over 60,000 disabled and so-called unworthy able-bodied Americans had been forcibly sterilized by 1958 (Gallagher, 1995). The infamous 1927 Supreme Court decision Buck v. Bell permitted the sterilization of Carrie Buck who was believed to be incompetent and genetically inferior. Justice Oliver Wendell Holmes in his decision wrote, “Three generations of imbeciles are enough” in reference to Buck’s mother having been institutionalized, and Buck described as promiscuous (Buchanan, 2007; Carlson, 2009; Smith, 1999).

Despite popular public and legislative support of the sterilization program, a group of ministers representing the Social Gospel Movement opposed Social Darwinism, arguing that the survival of the fittest mentality was against biblical teachings and that the Social Darwinism sentiment would promote selfish behavior and disregard for fellow human beings. However, not all Social Gospelers were in agreement, as many held firm to the notion that disability and illness were related to sin and defects within the individual (Hofstadter, Miller, & Aaron, 1959, as cited in Rubin & Roessler, 1995). In the end, despite the fact that the laws forbidding certain people to marry were never actually enforced and thus had little effect, psychologically the damage had been done regarding how society perceived and dehumanized people with various disabilities. As a result, Gallagher (1995) notes that many people with disabilities and their families during this period became ashamed or embarrassed of their conditions, and many became shut-ins and feared public ridicule.

EUGENICS TO AN EXTREME: EXTERMINATION (1899–1940s)

As the U.S. sterilization laws peaked during the 1920s, Germany passed its first sterilization law in 1933 (Gallagher, 1995). Leading to Germany’s sterilization laws were the popular opinions of several people who influenced the debate on Social Darwinism. The Germans, much like the Americans, were anxious to preserve their racial heritage. However, Germany’s anti-Semitic views misconstrued the primary philosophy of Social Darwinism; whereas Darwin and Spencer focused on heredity and the weaker section of the species, some German thinkers extended these principles to justify the genocide of the Jews.

One of the earlier influential thinkers in Germany was the famous biologist and social scientist Ernst Haeckel, who in 1899 wrote The Riddle of the Universe. This text went through 10 editions and sold extremely well. In it, Haeckel wrote:

Haeckel believed that certain disabilities were incurable and passed on through hereditary means. He believed this population to be a drain on the economy, and a commission was established to determine which people with deformities, mental illness, and other diseases should be allowed to live or die for what he referred to as “redemption from evil.” Haeckel also advocated for humanitarian reasons that certain people with disabilities should be killed at birth (Gallagher, 1995). This sentiment was essentially mirrored by another German scholar who followed Haeckel, Professor Heinrich Ziegler. Ziegler focused more on people with mental retardation, epilepsy, and alcoholism, stating that these people were primarily responsible for moral decay, murders, and other crimes. Ziegler believed that as crime was hereditary, it was pointless to try to rehabilitate or retrain criminals as they were incurable. He believed that all wrongdoers (e.g., drunks, vagrants, the poor, people with mental retardation or paralysis, and criminals) should be locked away for life and out of sight from the public (Gallagher, 1995).

In 1920, German psychiatrist Alfred Hocke and lawyer Karl Binding wrote what is believed to be a very influential book of its time for Germany: The Permission to Destroy Life Unworthy of Life. Both were professors who also believed in Social Darwinism; however, their views regarding natural selection and preservation of the race elevated to a new level. They argued that the medical profession should be allowed to administer a painless death to certain people for racially “hygienic” reasons (Gallagher, 1995). Hocke and Binding’s book became influential primarily because a young Adolf Hitler was intrigued by their ideas and in fact endorsed the book.

Through films dealing with topics on euthanasia of people with disabilities, documentaries depicting people with severe mental retardation living in dismal conditions, and other types of propaganda, German society was ready in the late 1920s to embrace a sterilization law. Gallagher (1995) notes that even Nazi schoolroom textbooks illustrated the perceived low value of disabled lives. A mathematics text titled Mathematics in the Service of National Political Education (as cited in Gallagher, 1995) cites the following problem: “If the building of a lunatic asylum costs 6 million marks, and it costs 15,000 marks to build each dwelling on a housing estate, how many of the latter could be built for the price of one asylum?” Another problem read, “How many marriage-allowance loans could be given to young couples for the amount of money it cost the state to care for the crippled, criminal, and insane?” (cited in Gallagher, 1995, p. 61).

It was only after the Nazis had assumed full authority in the legislative block that the sterilization program in Germany became law in 1933. During the fall of the same year, the Ministry of Justice under the Nazi-controlled German penal code proposed a law to authorize euthanasia. The news spread and in the United States, the New York Times cited details of the proposal, “It shall be made possible for physicians to end the tortures of incurable patients, upon request, in the interests of true humanity.” The proposed law, however, was never passed because of outcries from the Catholic and Lutheran authorities (Gallagher, 1995). Despite the failure of the euthanasia proposal, the concept continued to be supported and discussed among politicians, physicians, and scholars. All the while, between July 14, 1933, and September 1, 1939, the Nazis reportedly sterilized 375,000 people classified as congenitally feebleminded (203,000), schizophrenic (73,000), epileptic (57,000), and acute alcoholic (28,000), and those diagnosed with manic-depression, hereditary deafness, hereditary physical deformity, and hereditary blindness. During the same period, Hitler was secretly meeting with Nazi doctors, politicians, attorneys, and scholars to discuss and establish the systematic extermination of German citizens with disabilities.

Finally, on September 1, 1939, Adolf Hitler signed a secret order (unbeknownst to the public) to deliver what was termed “final medical assistance” to German citizens with disabilities. Specially selected physicians were made aware of the T4 killing program and how it was to be carried out. People with disabilities were described as “useless eaters” and “unprocessed inferiors” who drained the economy and burdened society without contributing anything in return. Gallagher (1995), in having reviewed Washington archives as well as the 1946 Nuremberg trial proceedings, notes how efficiently the killing program was run. Essentially, unknowing physicians across Germany were asked to provide lists of their patients with various disabilities. These patients were subsequently rounded up and exterminated, first by gas or injection, and eventually toward the latter part of the program, also by starvation, experimentation, and shooting. Those people with disabilities already in institutions were exterminated in much the same way. In the majority of cases, families were sent an urn of ashes with a letter regretfully indicating that their loved one had died of a contagious disease, and therefore had to be cremated for health and safety reasons.

Despite the remarkable organization of and initial efficiency in carrying out Hitler’s secret order, it soon became fraught with problems. First, there was confusion as to who should be placed on “the list.” Although Hitler initially excluded German war veterans with disabilities from being exterminated, toward the end of the program in 1941 this was no longer the case. Second, although the program initially began as one in which German citizens with disabilities were exterminated in a nonpainful manner, toward the end of the program they were being starved and shot to death. Third, some citizens who were placed on “the list” were arguably not disabled, especially when considering, for example, those with a single episode of reactive depression over the loss of a loved one but who were otherwise productive individuals. As Gallagher states, “When the German doctors decided to kill their insane patients, they destroyed the lives of many productive, valuable citizens” (Gallagher, 1995, p. 41). Hence, the age-old debate regarding who was considered to be the weaker section of the species resurfaced and was just as riddled with contradictions as it was in earlier times. By the time the German public became aware of, as well as outraged by, the final medical assistance program, 2 years had gone by, and an estimated 300,000 German citizens and war veterans had been exterminated. Under extreme pressure from both the public and the church, Hitler put an end to the killing of German citizens with disabilities in August 1941.

KEY LEGISLATION AND ATTITUDES IN THE UNITED STATES (20th CENTURY)

Despite the fate of German citizens with disabilities abroad and the popularity of Social Darwinism, more humane treatment and services for people with disabilities were slowly occurring in the United States. As World War I was ending, the implementation of the 1917 Smith–Hughes Act designed to provide funds for vocational training for dislocated industrial workers became law. There was also some recognition that people with certain disabilities had the potential for vocational training (MacDonald, 1944). This was followed up with the 1918 Soldier’s Rehabilitation Act, which was established to rehabilitate veterans with disabilities (Obermann, 1965) vocationally. Arguments regarding the need for a similar civilian program failed to be mandated until 2 years later when the 1920 Smith–Fess Act was passed. The Federal Board of Vocational Education administered the program at the federal level and offered a 50–50 matching state fund split to entice states to participate (Rubin & Roessler, 1995). Watson (1930, as cited in Chubon, 1994) noted how the war positively influenced the attitudes toward people with disabilities as well as increased advances in orthopedic surgery.

Obermann (1965) cited the attitudes of the vocational rehabilitation field during the 1920s as paternalistic toward people with disabilities, and social service employees held stereotypical views of people with disabilities. It was believed that such people were incapable of making vocational decisions; therefore, vocational rehabilitation workers were viewed as all-knowing, not-to-be-questioned specialists who would make decisions for clients with disabilities. These attitudes have become more popularly known as stemming from the medical model paradigm and unfortunately are still held by some helping professionals even today (Trieschmann, 1988).

Politically, little else happened in securing greater funding for people with disabilities until President Franklin Delano Roosevelt (FDR) took office in 1932. Roosevelt had taken office in the midst of the Great Depression and was intent on providing economic relief for the disadvantaged, poor, and homeless. He did this by signing into law the historic Social Security Act of 1935, which also made the federal vocational rehabilitation program permanent. Roosevelt himself had contracted polio at age 39 in 1921 and was keenly aware of not only the lack of services but also the attitudes toward people with disabilities (Rubin & Roessler, 1995). In his book FDR’s Splendid Deception (1994), Gallagher describes how FDR had an understanding with the news media that he was never to be photographed or filmed sitting in his wheelchair. Although Roosevelt ambulated by wheelchair and leg braces, he was always photographed or filmed standing at the podium or in his car meeting the public without any assistive device. He believed that the public would perceive him as a weak leader should it ever be known that he was disabled. With his condition, FDR also experienced a great deal of pain and spent much of his time in the therapeutic warm spring pools in Warm Springs, Georgia, which he later purchased and ran in 1927. Roosevelt spent so much time here, it became known by insiders as the “Little White House.” Despite his disability experience, Roosevelt did not specifically have a disability agenda. His interest was more with the poor and disadvantaged, and he even proposed a 25% reduction in funding the vocational rehabilitation program: an effort that did not pass Congress. It is ironic to note that FDR’s disability secret and fears of being discovered and perceived as weak is not how the public remembers him today. Having brought America through the Depression, passed the historic Social Security Act, and brought the United States through World War II, FDR is believed by many to be one of the greatest presidents this country has ever had.

World War II had a significant impact on the services, treatment of, and attitudes toward people with disabilities. A major development was the fact that over 12 million Americans went into the military, which freed up jobs in the civilian economy (Levitan, Mangum, & Marshall, 1976). Yelin (1991) cited that in all of the 20th century, people with disabilities had the highest employment rate during World War II. Yelin noted how the simple principles of supply and demand dictated what employers needed to do during the period. People with disabilities were hired in many of the factories that made products for the war. Unfortunately, once the war was over, many of the able-bodied males and females who returned home ultimately displaced employees with disabilities, once again increasing the high unemployment rate of this population, which continues to hover around 70% to the current day.

Following World War II, there continued to be medical advances that improved the life expectancy of certain disabilities, especially those with physical impairments such as spinal cord injury. Legislatively, the 1943 Barden–LaFollette Act extended rehabilitation services to people with mental retardation and mental illness. In addition, the first federal-state rehabilitation program for the blind was approved and continues today as a separate program. Services for people with mental retardation and mental illness were further expanded in the 1954 Vocational Rehabilitation Act Amendments (Parker & Szymanski, 1998). This Act also saw first-time funding for three universities to prepare training rehabilitation professionals to provide primarily vocational counseling for people with disabilities.

Although other disability-related legislation ensued over the subsequent two decades, the later key disability legislation came about with the 1973 Rehabilitation Act. Before this, the United States experienced the long overdue growing pains of the civil rights movement, culminating in the Civil Rights Act of 1964. This Act mandated equal treatment and opportunities for African Americans and other minorities. The women’s rights movement also occurred during this period, again demonstrating the effectiveness of peaceful, social activism as a powerful way to facilitate social change through federal government intervention (Rubin & Roessler, 1995). In addition, during the 1960s, consumerism and the consumer rights movement led by Ralph Nader demonstrated that consumers needed to be actively involved in the type and quality of services they received. These movements had a significant impact for people with disabilities who also continued to be disenfranchised from participating in employment, housing alternatives, and voting, as well as socially.

The Rehabilitation Act of 1973 was historic for several reasons. The first was the fact that President Richard Nixon was not a fan of vocational rehabilitation and wanted to cut funding. He had also previously twice vetoed bills to establish independent living centers, but finally agreed to fund a comprehensive needs assessment and six independent living center demonstration projects in 1973 (Rubin & Roessler, 1995).

Second was the establishment of Client Assistance Programs (CAPs), designed to advise clients of various services, and for counselors to act as ombudsman or mediator in situations where clients experienced problems in obtaining services for which they might be entitled. The Rehabilitation Act of 1978 gave further strength to CAPs by including assistance for legal remedies to ensure the rights of clients with disabilities. The third key aspect of this 1973 legislation was the implementation of the Title V Sections 501 to 504. Section 501 of the Act limited discrimination in any federal hiring, placement, and advancement of “qualified” people with disabilities in employment. In addition, affirmative action plans had to be developed for each government agency. Relatedly, Section 503 of the Act limited discrimination by private employers who received federal funds of $2,500 or more. Although these actions were initially good first steps, private businesses that did not use federal funds were still allowed to discriminate against hiring qualified people with disabilities. The fourth key aspect of the 1973 legislation involved Section 502, where the Architectural and Transportation Barriers Compliance Board was established to ensure compliance with the Architectural Barriers Act of 1968. This Section also involved investigating transportation and housing barriers/needs, as well as promoting the use of the international accessibility symbol in all public buildings (Jenkins, Patterson, & Szymanski, 1998). Section 504 addressed equal opportunity and discrimination against people with disabilities in education programs, health care, housing, and employment. Regarding the employment provision, an individual could not be found unqualified if a reasonable accommodation could otherwise make the individual qualified to perform a particular job unless it caused the employer undue hardship (Rubin & Roessler, 1995). Again, although these were encouraging changes toward ensuring the civil rights of people with disabilities, they were limited to only those entities receiving federal funds.

IMPLICATIONS AND THE FUTURE OF DISABILITY: REVISITING DARWIN AND EUGENICS

Have we learned from our past? As we begin to enter a new era of being able to determine that a mother’s unborn fetus carries the gene for a congenital disability such as mental retardation or muscular dystrophy, parents and their physician can decide early on whether to abort and start over. The gene(s) responsible for later-in-life neuromuscular diseases, such as Alzheimer’s or Huntington’s disease, will soon be able to be eradicated as well. Similarly, extracting stem cells from aborted fetuses or growing them in a Petri dish may help millions of people with neuromuscular diseases such as Parkinson’s as well as spinal cord injury and other disabilities. Couples today can also choose to have a designer baby by being impregnated with eggs for sale by a supermodel if they desire (Wilson, 1999). Smart (2009) cited an October 1999 Associated Press story about a Playboy photographer who started a website selling supermodel eggs. In just the first morning of bidding, 5 million people visited the site with the highest bid for an ovarian egg from the supermodel listed at $42,000. In another process called preimplantation genetic diagnosis, parents can choose their child’s gender, and have their unborn fetus genetically altered for eye or hair color. Cloning also appears to be inevitable. Some scientists indicate that various diseases and disabilities may be eradicated by harvesting and extracting healthy cloned body parts and implanting them in their disabled host. Finally, some surveyed physicians have anonymously indicated that they have assisted terminally ill patients to end their lives as well as having not provided life-sustaining assistance for newborns with severe congenital disabilities (Singer, 1995). Are these changes viewed as a step forward or backward in human development? This is not easily answered. Olkin (1999) states that by preventing babies with disabilities from being born, and because of advertising or charity drives portraying the “suffering” of people with disabilities, society negates the very existence of those with congenital disabilities and conveys the message of the disabled being better off not existing at all than to exist with a disability. As Olkin, who was born with polio, indicates, however, most people with disabilities would not have chosen to be aborted and do not consider themselves to be suffering.

Nevertheless, with genetic testing becoming more common, would-be parents are rarely counseled to carry an unborn fetus suspected of a genetic defect. Roberts, Stough, and Parrish (2002), for example, found that of high-risk women referred by their physicians for genetic testing, 65% indicated they would abort if there was a defective gene found. Those women who were provided additional information about the potential disability her child might have were more likely to continue with the pregnancy. The women also reported that no real effort was made to educate or discuss the pros and cons of raising a child with a disability. Such findings beg the question: “Do any of us have the right to impose our values to assume what does and does not make life worth living or know what is best for parents?” These are questions bioethicists and society morally grapple with as we continue to advance the medical sciences.

In the first few pages of her book Disability, Society, and the Individual (2009), Julie Smart contemplates, “What is normal?” She indicates that normal is often defined as the absence of deviance or disability. Webster’s Dictionary defines the word normal as “conforming with or constituting an accepted standard, model or pattern; esp., corresponding to the median or average of a large group in type, appearance, achievement, function, development, etc.” (Webster’s Dictionary, 1980, p. 970). Smart (2009) argues that typically the majority culture or those in power are the ones who define what is normal. This was also the mindset a century ago among primarily White Anglo-Saxon male academics, politicians, and physicians in power who contemplated who the weaker section of the species was who should be prevented from procreating. Similar logic also epitomized Nazi Germany’s extermination program in pursuit of the superior race in the 1930s and 1940s.

We continue to revisit this issue today as eugenicists proclaim the decline of civilization. Van Court (1998) notes that civilization depends on innate intelligence and that ancient civilizations fell when intelligence declined. Of course, there is no empirical way to prove this assertion. Herrnstein and Murray, in their controversial 1996 book The Bell Curve, conclude that with the sample they studied, a majority of social problems occurred when the average IQ in their sample dropped three points from 100 to 97. Princeton University professor Peter Singer continues to draw criticism from disability advocates for his views that fetuses with genetically detected disabilities should be aborted and that parents should have the right to terminate the life of their severely disabled infant within 30 days of its birth (Marini, 2002b).

Recently, the science of eugenics has focused more on IQ arguments and the science of “dysgenics.” Dysgenics refers to the study of intellectually superior scoring people having fewer children, while uneducated or lower IQ parents are having more children (Lynn & Van Court, 2004; Lynn & Vanhanen, 2002; Van Court, 1998). Specifically, in Lynn and Vanhanen’s (2002) book IQ and the Wealth of Nations, the authors argue that the decline of IQ is correlated with an increase in crime, high unemployment, greater poverty, and dependence on welfare by many single mothers. Conversely, of the 81 countries assessed, those with higher IQs had higher levels of education, had greater economic success, and made more contributions to their social infrastructure.

CONCLUSION

Ironically, because of medical advances, the life expectancy and quality of life for people living with disabilities in industrialized nations continue to improve from a medical perspective for those who can afford health care. To this end, the United States continues to arguably have a “survival of the economically fittest” mentality if universal health care is not soon realized. For the estimated 76 million baby boomers presently transitioning to retirement, the golden years may not be something to look forward to given the increasing health care costs. In 2010, President Obama became the first president since FDR to pass a major health reform bill, but with health insurance companies arguably still largely in control and Congressional Republicans always looking to repeal health care, the resulting impact remains to be seen.

Finally, as far as our current medical capabilities to genetically screen out and abort fetuses with a potential disability gene, it is difficult to think of a world without the likes of Franklin D. Roosevelt, Stephen Hawking, Beethoven, Albert Einstein, Stevie Wonder, Wilma Rudolph, and the thousands of other gifted people born with congenital and adventitious disabilities who have undoubtedly positively influenced the human condition. Nevertheless, the Darwin debate continues today in the eugenics guise of genetic screening and humankind’s ongoing quest for the perfect being as well as the survival of the financially fittest.

INSIDER PERSPECTIVE

DISCUSSION QUESTIONS

EXERCISE