The Destigmatization of Epilepsy in America, 1963-1968

INTRODUCTION

In April of 1973, a legal case concerning a New York state law prohibiting discrimination against the physically handicapped reached a public hearing [1]. John Langenbach, who was diagnosed with epilepsy as a child, had filed the claim with the State Civil Rights Division on the grounds that the company Parachutist, Inc. was unjustly preventing him from accessing their facilities because of his disability [2]. In discussion of this case, Langenbach stated in the New York Times that “because of epilepsy, I have suffered some sort of discrimination in almost everything I’ve tried to do” [3].

People with epilepsy have been specifically discriminated against in American law during the 20th century. Along with Langenbach’s case, people with epilepsy have long been restricted in matters of marriage, employment, and even having children. This was integrally tied to the rise of the eugenics movement in American society that reached prominence in the early 20th century. However, after the Second World War, many states repealed certain discriminatory laws such as the forced sterilization of people with epilepsy, along with other disabilities. In 1968, Virginia removed epilepsy from its 1924 Eugenical Sterilization Act, before eventually repealing the law in 1974.

This paper will analyze the historical development of attitudes towards epilepsy in the years leading up to the eventual removal of epilepsy from the Virginia Sterilization Act of 1924. Through a case study of this legal reversal, it will illustrate the gradual destigmatization of epilepsy and argue that the unification of epilepsy advocacy organizations, the development of anti-seizure medications, and the influence of the civil rights movement paved the way for repealing discriminatory laws against epilepsy in holdout states like Virginia.

BUCK V. BELL (1927)

In 1924, the General Assembly of the Commonwealth of Virginia passed the Eugenical Sterilization Act. The legislation allowed for the sterilization of patients being held in state institutions that were “afflicted with hereditary forms of insanity, idiocy, feeble-mindedness, and epilepsy” [4] Carrie Buck was a young woman who had been institutionalized at the Virginia State Colony for Epileptics and Feeble-minded [5]. Buck was reportedly the third generation of a line of congenitally feeble-minded individuals [6]. She became the first person to be sterilized under the Act [7]. Before she was subjected to the procedure, the case of her sterilization went before the Supreme Court of the United States [8]. Known as Buck v. Bell (1927), the Court held that there was nothing unconstitutional about the sterilization law. Justice Oliver Wendell Holmes wrote “three generations of imbeciles are enough” [9].

Buck sparked a new stage in the American eugenics movement, underscoring the permissibility of sterilization as a means to accomplish eugenical goals. Eugenics philosophy grew and was refined in the U.S., however it was infamously embraced by the Nazi German regime [10]. The Second World War highlighted the role of eugenics in facilitating the tragedy of the Holocaust, causing eugenics and Nazi ideology to become inextricably linked in the American consciousness. In the post-War years, this led to a loss of support for eugenic policies like sterilization. The Immigration Act of 1924, which was similarly inspired by the eugenics movement, was repealed in 1965 following the broader trend of eugenical discrimination becoming unpalatable to society [11]. Unlike sterilization and immigration, epilepsy had yet to be brought to the forefront of public consciousness. However, there continued to exist widespread underlying negative sentiments towards epilepsy that resembled those of “medieval times,” hindering the road to destigmatization [12]. Advocacy groups responded accordingly and began the process of presenting a more visible and unified front in the fight to break down the years of entrenched stigma surrounding epilepsy in America.

EPILEPSY ADVOCACY UNITED

Epilepsy advocacy organizations in the mid-century maneuvered considerably after the Second World War, with new groups forming across the country and later joining with another in a series of mergers. Organizations found themselves competing with each other for funds and support, hindering the overall efficacy of the epilepsy advocacy movement [13]. In 1957, the American Epilepsy Federation (AEF) was formed with the primary goal of uniting “all societies now concerned in the common cause of epilepsy” [14]. The AEF later joined with two other major epilepsy organizations, the National Epilepsy League and the United Epilepsy Association, in 1965 to form the Epilepsy Association of America (EAA) [15].

In April of 1965, Senator Robert F. Kennedy remarked on this development while speaking to the U.S. Senate, stating "I am glad to report to you the recent consolidation of three national voluntary health agencies working in the epilepsy field into a single organization, known as the Epilepsy Association of America (EAA). Representative of all parts of the Nation, this newly welded organization is the designated national spokesman for thousands of volunteers everywhere who have joined hands in a dedicated endeavor to help persons with epilepsy, their families, and their communities” [16]. In particular, Senator Kennedy saw some of the greatest potential in this merger in its ability to bring “unprecedentedly sharp attention” to epilepsy issues [17]. From Kennedy’s perspective, changing public attitudes were the key to removing many of the “costly, humiliating and totally unnecessary barriers” that Americans with epilepsy faced [18]. Shifting public opinion on the topic proved to be one of the most formidable challenges to advocates.

Howard A. Rusk, a prominent American physician, applauded the formation of the EAA in a March 1965 New York Times article called “A Gain for Epileptics,” emphasizing the importance of unifying advocacy efforts [19]. Prior to the merger, “there were four organizations claiming to be national in scope” that were dedicated to epilepsy issues, a matter that Rusk deemed “chaotic in effectiveness [20]. To Rusk, unified efforts stemming from a common cause was the key to promoting effective action and results. Only through unity could epilepsy advocates achieve the “enlightenment” of the “mystery of misunderstanding and prejudice that surrounds epilepsy” [21]. Both Senator Kennedy and Rusk recognized the benefits that unifying the national epilepsy organizations into a singular platform and voice could have on shaping public opinion.

The Epilepsy Foundation, the other nationally-oriented epilepsy advocacy group in the country, was open to the possibilities that consolidating resources and influence could have for the epilepsy advocacy movement. Shel Sukoff, the Director of Information and Education for the Epilepsy Foundation, agreed that a merger between the EAA and the Foundation would increase the reach and efficacy of their shared advocacy efforts in an interview in April of 1967 [22]. In discussion of a possible merger, Sukoff said that “we believe that merger will present an opportunity for the newly-formed nationwide organization to fulfill a never before realized role in mobilizing effective community action programs, in stimulating support for vital research, in educating both the public and the professional, and in pointing out needs and opportunities as they arise – to a massive extent, and with a tremendous measure of success” [23]. By the end of 1967, the Epilepsy Foundation agreed to a merger with the EAA to eventually found the Epilepsy Foundation of America (EFA) [24]. The establishment of the EFA marked the culmination of over two decades of incorporations and mergers of epilepsy organizations in America. The significance of this was remarked on by President Lyndon B. Johnson, who described this outcome as a “milestone in a major health field” [25].

The Epilepsy Foundation proved to be an effective force in the fight to change public opinion around epilepsy. In 1967, John Metelsky, a Master’s candidate at American University in social psychology, published a thesis on the public relations program at the Foundation and its apparent efficacy. In his research, Metelsky found that “the Foundation received $161,000 more free radio and television time in 1965 than it did in 1963,” concluding that “such a vast increase in free air time naturally means a vast increase in the number of persons reached by radio and television” [26]. An analysis of letters written to the Foundation by members of the public jumped “from 6,000 persons writing to the Foundation in 1963 to 100,000 persons in 1965” indicating that “the public relations program has [had] a powerful impact” on the American public” [27]. Finally, a study of the New York Times showed that “in 1963, the year before the present PR staff joined the Foundation, no articles on epilepsy were listed in the Times' Index. The Index listed three articles in 1964, seven articles in 1965, and five articles in 1966” [28]. There was a clear parallel between the increasing public relations campaign efforts of the Foundation, along with other groups, and increased coverage of epilepsy in the press and the media.

ANTICONVULSANTS: TREATING SEIZURES AND STIGMA

According to Senator Kennedy in 1965, the mergers between epilepsy advocacy organizations was a critical next step in closing “the gap between discoveries in medicine and their application to the elimination of misery” [29]. This portrayal of advancements in the medical treatment of epilepsy as the key to resolving social, along with physical, challenges to people with epilepsy became increasingly common in the press.

In May 1967, Newsweek published an article entitled “Epilepsy’s Fading Stigma” which outlined the landscape of contemporary seizure treatments and their potential to ultimately “abolish the ancient stigma” against epilepsy. According to Maurice Charlton, a physician at Columbia-Presbyterian Medical Center, psychomotor seizures in particular were responsible for giving epilepsy “a bad name” [30]. Symptoms of psychomotor seizures, such as resistance to being touched, were often confused with other psychiatric illnesses and led to epilepsy in general being stigmatized by association [31]. What then led to epilepsy’s so-called “fading” stigma? In 1967, “some 75,000 Americans” had been diagnosed with psychomotor epilepsy [32]. For many years, these patients were largely unable to be treated with available anticonvulsants, such as “Dilantin, phenobarbital, Mysoline and Zarontin.” Even though these drugs were said to cumulatively “prevent seizures in 85 percent of epileptics,” they were not effective for psychomotor seizures [33].

However, in April of 1965 a physician in Baltimore published a new development. Samuel Livingston, a physician at the Epilepsy Clinic at Johns Hopkins Hospital, reported that a new drug was the “best drug we’ve run across in treatment of psychomotor epilepsy” [34]. Carbamazepine, a newly developed anticonvulsant, halved the frequency of seizures in 26 out of 61 patients in a study, with 18 patients having seizures “prevented completely” [35]. Along with the existing pharmaceutical options to prevent seizures, the promising results of carbamazepine represented a possible final chapter in the landscape of anticonvulsants. Other drugs such as Ospolot were also being investigated for their “apparent promise” in treating psychomotor seizures [36]. These new drug developments inspired hope that seizures, the historical source of negative public stigma, could be mitigated for almost all people afflicted with epilepsy. Softening attitudes towards epilepsy seemed to stem from “the development of drugs to control it” and its most aggressive symptoms [37].

In August of 1967, the Wall Street Journal published an article called “Combating Epilepsy: Ancient and Mystifying Affliction Slowly Yields To New Drugs” [38]. Ralph E. Winter, a staff reporter at the Journal, wrote that new drugs “now make it possible for doctors to eliminate epileptic seizures in about half the estimated 1.5 million U.S. victims of the disease, and to reduce the frequency of seizures greatly in another 25% of the cases” [39]. Winter asserts that “society’s attitudes towards epilepsy” have changed and been stimulated by these advancements in medicine [40]. Society in this discussion is effectively a stand-in for the legal landscape of restrictions placed on people living with epilepsy. Since Buck in 1927, many states maintained laws that authorize the sterilization of epileptics, along with preventing marriage, employment, and driving. But in 1967, these laws were changing. According to Winter, “more than a dozen other states recently have repealed laws forbidding epileptics to marry, and where such laws remain on the books they are rarely enforced” [41]. People with epilepsy were increasingly allowed to drive and work in more occupations as long as their “disease [was] under control” [42].

A sampling of press clippings from 1967 reveal a steady narrative of hope for people with epilepsy living in the U.S. This progress in fighting social stigma as well as legal restrictions is strongly attributed to the development of new anti-seizure medications, specifically as it quelled concerns of psychomotor seizures. Medical research reported several breakthroughs in 1967, and had been developing in the years prior. However, this year was also significant for its connection to the rise of civil rights activism which unintentionally improved the success of the epilepsy movement.

EQUALITY MOVEMENTS IN PARALLEL

When epilepsy advocates eventually called to increase the rights and protections for people with epilepsy in 1967, they did not speak to an unprepared audience. Rather, many years of civil rights activism had primed the American public to sympathize with marginalized groups of Americans who faced systemic injustice and entrenched legal discrimination. The civil rights movement for racial equality was often highly publicized, making it conspicuous in nature. However, activists fighting for civil rights still faced many political barriers to achieving their goals.

In an article published in Human Rights, a publication of the American Bar Association, the political analyst Juan Williams attributes stagnation in lawmaking concerning racial equality to southern Democrats who “paralyzed” Congress [43]. According to Williams, the power and influence held by southern Democrats in American government posed a significant challenge to President John F. Kennedy in pushing civil rights legislation. Confronted with a government at odds with itself, civil rights activists addressed this challenge by pursuing “a series of highly visible protests and boycotts intended to force the Kennedy administration and those in Congress who supported civil rights to defend the rights of blacks to eat at lunch counters, to ride buses without sitting in the back,” as well as “an end to employment discrimination” [44] Eventually, the Civil Rights Act was passed under President Lyndon B. Johnson in 1964. The Act not only addressed racial equality but also generally “forbid discrimination on the basis of race, color, religion, or national origin” [45]. However, the Act did not include protection for Americans with disabilities or certain diseases against discrimination under the law. And yet, because of these developments within the civil rights movement, discourse on expanding and promoting equality in American society was fresh in the consciousness of the public, manifesting itself in a 1967 Supreme Court challenge. The Supreme Court case Loving v. Virginia (1967) addressed the matter of anti-miscegenation, the prohibition of interracial marriage, and elevated the importance of marriage in civil rights, setting the stage for epilepsy advocates. The Court’s ruling in Loving determined that the practice of prohibiting interracial marriage was indeed unconstitutional. Delivered by Chief Justice Earl Warren, the Court asserted that marriage is one of the “basic civil rights of man” [46]. The proposition that marriage is a basic civil right for American citizens placed the issue under the purview of the 14th Amendment which codified equal protection under the law. Loving ultimately heightened the importance of marriage in the fight for civil rights and placed discriminatory marriage laws into the crosshairs of American public opinion. Along with race, Virginia marriage licenses had long required couples to affirm that "neither is she nor am I a habitual criminal, idiot, imbecile, hereditary epileptic, or insane person” [47]. Epilepsy had long been seen as a disqualification from marriage in Virginia, among many other states [48]. This both contributed to social stigma of the disease and was itself the product of stigmatization.

Two months after the Loving decision, Benedict Nagler, a prominent epilepsy advocate, published an article attacking epilepsy laws by connecting antiquated marriage restrictions with novel seizure mitigation techniques, representing a critical shift in the destigmatization process. Nagler, a member of the National Advisory Committee of the Epilepsy Foundation, called for the revision of state laws that prevented marriage and allowed for sterilization of people with epilepsy. Nagler stated that “Virginia and West Virginia are the only States left that have anti-marriage laws on the books for epileptics. North Carolina recently erased its statutes limiting marriage of persons with epilepsy, subjecting them to sterilization” [49]. The Virginia prohibitions on marriage specifically called out people who have been institutionalized for epilepsy. In his attack against Virginia laws, Nagler remarked that “about half the estimated two million U.S. epileptics can have their seizures eliminated and in 25 percent of the cases, they have been reduced frequently” [50]. The confidence of medical experts like Nagler regarding the mitigation of seizures undercut lasting concerns over epilepsy being unmanageable. Nagler’s opinion, along with many other articles in the press, solidified the idea that seizures and their mitigation represented the crucial final step in driving the repeal of discriminatory laws against people with epilepsy in 1967. The recency of Loving and the broader political atmosphere of the civil rights movement during this period underscore the influence of the fight for racial equality in improving the success and salience of calls for the epilepsy advocacy movement.

CONCLUSION

Multiple forces worked in conjunction with one another in order to foster an atmosphere open to destigmatizing epilepsy in American society. The unification of epilepsy advocacy groups allowed for a clear and singular voice to resonate with both the public and lawmakers, increasing the reach and efficacy of their message. The development of new anticonvulsant drug therapies that were effective at mitigating seizures was the next step in turning the tide against epilepsy stigma. Together with drug developments, the highly prominent fight for racial equality in matters such as marriage rights solidified support for anti-discrimination reform in the law. In 1968, the year after many of these developments, Virginia removed epilepsy from the purview of the Eugenical Sterilization Act before eventually repealing the Act entirely in 1974. The Act being synonymous with the peak of American eugenics, the removal of epilepsy from the Act symbolized the beginning of a new era of modern attitudes towards epilepsy and those who live with it.

BIBLIOGRAPHY

[1] “Epileptic in a Landmark Case.”The New York Times, (April 15, 1973): 105. Retrieved from https://timesmachine.nytimes.com/timesmachine/1973/04/15/97131939.html

[2] Ibid.

[3] Ibid.

[4] General Assembly of Virginia. “Chapter 46B of the Code of Virginia § 1095h–m (1924).” Code of Virginia, (March 20, 1924): 209.

[5] Burrus, Trevor. “The United States Once Sterilized Tens of Thousands –Here’s How the Supreme Court Allowed It.” Cato Institute, ( January 27, 2016).

[6] Ibid.

[7] Ibid.

[8] Ibid.

[9] Ibid.

[10] Shorvon, Simon D. “The Idea of Epilepsy: A Medical and Social History of Epilepsy in the Modern Era (1860–2020).” Cambridge University Press: Cambridge, (January 2023): 180.

[11] Burrus, Trevor. “The United States Once Sterilized Tens of Thousands –Here’s How the Supreme Court Allowed It.” Cato Institute, ( January 27, 2016).

[12] Winter, Ralph E. “Combating Epilepsy: Ancient and Mystifying Affliction Slowly Yields To New Drugs.” The Wall Street Journal, (August 11, 1967).

[13] Shorvon, Simon D. “The Idea of Epilepsy: A Medical and Social History of Epilepsy in the Modern Era (1860–2020).” Cambridge University Press: Cambridge, (January 2023): 206.

[14] Shorvon, Simon D. “The Idea of Epilepsy: A Medical and Social History of Epilepsy in the Modern Era (1860–2020).” Cambridge University Press: Cambridge, (January 2023): 206.

[15] Metelsky, John M. “The Public Relations Program Of The Epilepsy Foundation In Light Of The History Of Prejudice Against Epileptics.” The American University, Master’s Thesis, 1967: 31.

[16] Metelsky, John M. “The Public Relations Program Of The Epilepsy Foundation In Light Of The History Of Prejudice Against Epileptics.” The American University, Master’s Thesis, 1967: 144.

[17] Ibid.

[18] Ibid., 145.

[19] Ibid.

[20] Ibid.

[21] Ibid.

[22] Ibid.

[23] Ibid.

[24] Shorvon, Simon D. “The Idea of Epilepsy: A Medical and Social History of Epilepsy in the Modern Era (1860–2020).” Cambridge University Press: Cambridge, (January 2023): 206.

[25] Ibid., 207.

[26] Metelsky, John M. “The Public Relations Program Of The Epilepsy Foundation In Light Of The History Of Prejudice Against Epileptics.” The American University, Master’s Thesis, 1967: 139.

[27] Ibid., 140.

[28] Ibid., 141.

[29] Ibid., 144.

[30] “Epilepsy's Fading Stigma.” Newsweek: New York, vol. 69, iss. 20, (May 15, 1967): 66.

[31] Ibid.

[32] Ibid.

[33] Ibid.

[34] Ibid.

[35] Ibid.

[36] Ibid.

[37] Ibid.

[38] Winter, Ralph E. “Combating Epilepsy: Ancient and Mystifying Affliction Slowly Yields To New Drugs.” The Wall Street Journal, (August 11, 1967): 1.

[39] Ibid.

[40] Ibid.

[41] Ibid.

[42] Ibid.

[43] Ibid., 7.

[44] Ibid.

[45] “The Civil Rights Act of 1964.” Harvard Law Review, vol. 78, no. 3 (January 1965): 687.

[46] “Excerpts From Supreme Court's Ruling on Virginia's Ban on Miscegenation.” The New York Times, (June 13, 1967): 29. [47] Burrus, Trevor. “The United States Once Sterilized Tens of Thousands –Here’s How the Supreme Court Allowed It.” Cato Institute, ( January 27, 2016).

[48] Ibid.

[49] “Va. Statutes on Epilepsy are Assailed.” The Washington Post, ( August 18, 1967): 4.

[50] Ibid.