October 2019

The Racialized History of Disability Activism from the “Willowbrooks of this World”[1]

Their stories enrich and expand our understanding of both disability and civil rights activism—not as an afterthought or appendage, but as integral to both.

by Jorge Matos Valldejuli

In 2010, a celebration honoring two major figures of the Civil Rights Movement took place at the iconic Apollo Theater in New York City.[2] Both Percy E. Sutton, the former Manhattan Borough President and once attorney for Malcolm X, and Wilbert “Bill” Tatum, the former editor and publisher of the city’s leading African-American newspaper, the New York Amsterdam News, had recently passed. The event was sponsored in part by the Gouverneur Parents Association (GPA), “an organization for people with special needs, a cause near to the heart of both honorees,” headed by Willie Mae Goodman.[3] Mother to a woman born with a developmental disability, Goodman praised both honorees and proudly announced that a group home in East Harlem, where her daughter Margaret lived, was to be named in honor of Sutton. But how did a little-known group representing disabled people come to sponsor a tribute for two Civil Rights giants? And why would Goodman, a retired school cafeteria worker, be spearheading a celebration that combined Disability and Civil Rights under the same banner?

More than thirty years earlier, both Goodman and the GPA operated amidst the disability and legal activism of the 1970s, which combined lawsuits and social advocacy to force overhauls to the care and confinement of those with psychiatric, developmental, and intellectual disabilities.[4] This movement gained visibility by opposing the warehousing of populations deemed “mentally retarded” in a nationwide system that had been growing since the nineteenth century. Originally developed with the goal of “educating” the disabled, this system slowly evolved into a custodial model of total institutionalization.[5] In New York City, the latter function is best exemplified by the Willowbrook State School in Staten Island, which opened in 1947. Less than two decades later, to relieve overcrowding at Willowbrook, the Gouverneur Division was opened in the Lower East Side as an annex to the main facility. Although modeled on other state schools across the nation, these acute problems of overpopulation and dangerous health conditions secured Willowbrook’s iconic position as a symbol of the abuse and segregation of the developmentally and intellectually disabled in U.S. society.[6]

“Willowbrook State School,” Irma and Paul Milstein Division of United States History, Local History and Genealogy, The New York Public Library. New York Public Library Digital Collections (Accessed 18 October 2019) https://on.nypl.org/2PJhHpd.

Willowbrook became a national scandal in 1972 when Geraldo Rivera, then a young reporter of Puerto Rican-Jewish heritage working with the local ABC news affiliate, broadcasted a series of horrifying images that depicted more than five thousand children and adults living in ghastly conditions. The televised outcry galvanized a struggle that culminated in the 1975 Federal Willowbrook Consent Decree. It ordered the state of New York to gradually transfer residents to community-based group homes and other facilities, while also mandating the development of support services for persons with developmental and intellectual disabilities. The closing of Willowbrook in 1987 came to represent the long campaign, known as deinstitutionalization, to abolish similar institutions nationwide. The Willowbrook story evolved thereafter as foundational to the Disability Rights Movement.[7]

Yet despite the resonance of the Willowbrook story, the issue of race is rarely acknowledged in subsequent narratives about the institution. This is all the more surprising given that the development of Willowbrook coincided with a postwar social transformation that dramatically altered racial relations in the city.[8] Following the Second World War, thousands of migrants from Puerto Rico as well as the arrival of African Americans from the deep South reshaped the racial and cultural makeup of New York.[9] A colossal populational shift had thus coalesced alongside the forces of deindustrialization, white flight, an aging housing stock and increasing poverty due to a transfer of wealth to the suburbs.[10] This phenomenon led to a racialized portrayal in the popular imagination of a city inhabited by Blacks and Puerto Ricans, emblematic of the nation’s decaying inner cities.[11]

These developments were reflected in the population at Willowbrook, where African Americans and Puerto Ricans constituted about thirty one percent of its residents, representing the largest minority population of any similar facility in the state.[12] In a 1972 personal reflection on the scandal, G. Rivera offers a glimpse into this reality:

In the month we reported Willowbrook, I never once mentioned race or class. I was afraid that New Yorkers were bored with the Civil Rights movement, and that if I made it a social civil rights issue, the middle-class whites—the people whose votes control the political machinery for fundamental change would say, “Oh, it’s just those poor people again. They don’t pay for anything and still they’re never satisfied.” But the truth, Dr. Wilkins told me, is that about 80 percent of the children of Willowbrook come from poor families. In this town, poor is translated black or Puerto Rican.[13]

In this stunning statement, Rivera rightly places the scandal as a Civil Rights issue that was ignored out of political expediency. His revelatory erasure of this aspect of the story is one factor among many that explains why the narratives surrounding Willowbrook are mostly devoid of the social and racial history of the city during this period.[14] The work of this article is thus one of redress. Recontextualizing Goodman and the GPA within this history underscores the crucial role played by activists of color and reveals the extent to which experiences of disability, as well as disability activism, were shaped by the intersectionality of race and class.

While the 1972 television exposé ingrained Willowbrook into the national consciousness, the activism of the GPA was actually the first shot fired in the long “Willowbrook Wars.”[15] The GPA took its name from the Gouverneur Division in Manhattan, the annex that received more than 200 children—overwhelmingly Black and Puerto Rican—from the overcrowded Willowbrook facility. Most of them required specialized care as they were non-ambulatory and considered the most severely disabled residents at the main facility. Yet in April of 1971, in the midst of a budget crisis afflicting the state, the Department of Mental Hygiene (DMH) announced the closing of Gouverneur and the return of its residents back to Staten Island. By then, cutbacks had already had a disastrous, deteriorating impact on life at Willowbrook.

The announcement enraged the parents, who were aware that the unravelling conditions signaled a death sentence for their children. They then sprang into organized action: the GPA mobilized to protest the removal of the Gouverneur’s young and mostly non-ambulatory residents. Under the leadership of Willie Mae Goodman, a black school cafeteria worker from East Harlem, the parents were spurred on by the cry of “only over our dead bodies.”[16] They occupied the streets and sought legal means to win a court injunction that temporarily halted the transfers. Despite losing to the state on appeals, they compelled the DMH to scale back their plans to move the children.[17] The daring outcry from these parents of color, including many who spoke little English, had yielded a temporary victory.

“Gouverneur Hospital Old Building, 621 Water Street in New York City,” Wikicommons. 2 April 2009 (accessed 18 October 2019) https://bit.ly/2pEOmkT.

These actions were possible because the parents at Gouverneur did not organize in isolation. They counted on support from other groups, like white parents and activists who were also mobilizing in Staten Island. Moreover, the GPA gained momentum and was influenced by virtue of being in a city that, at the time, was a focal point of the extended Civil Rights struggles taking place around structural racism in housing, education, police brutality, and health care.[18] Militant organizations such as the Puerto Rican-led Young Lords Party (YLP) and the Black Panther Party (BPP) did not formally recognize the GPA; however, members of local neighborhood chapters participated in GPA activities.[19] Both the YLP and the BPP were active in larger national efforts against “medical discrimination,” which challenged the unequal delivery of healthcare services to communities of color and demanded inclusion in relevant decision-making processes usually dominated by public health institutions.[20]

One key action crystallized this movement and left a deep impression on health activists in the city—the 1970 Lincoln Hospital takeovers by the YLP and the Health Revolutionary Union Movement (HRUM). Supporting their efforts were the BPP and white progressive doctors of the Medical Committee for Human Rights (MCHR).[21] This acute racial awareness, with Blacks and Puerto Ricans at the center, permeated social activism in the city. These conditions may explain why GPA activists were uniquely positioned to forge successful, if unlikely, alliances across racial, class, and generational lines—and, in the process, to formulate creative demands to address not only disability but racial and class discrimination as well.

The social turmoil eventually transformed the GPA’s own ranks. Jose Rivera, then a young Puerto Rican adolescent, remembers that his mother, Maria Caceres, immediately assumed a leadership role. This allowed her to advocate for her disabled son, Luis, then housed at the Gouverneur, while also organizing other Spanish-speaking parents.[22] Because of Maria’s limited English, however, young J. Rivera became increasingly involved, not only advocating for his brother’s care, but also serving as a translator to both his mother and other parents. Willie Mae, the GPA’s president, cultivated J. Rivera’s growing awareness and leadership abilities. The two were a formidable team: she a passionate spokesperson and J. Rivera her protege, coordinating strategy and drafting endless letters to parents, politicians, and state health authorities.

After the closing of Willowbrook, Goodman and J. Rivera persuaded the state to build a specialized care facility in East Harlem for former Gouverneur residents, and actively lobbied figures such as Percy Sutton and Wilbert Tatum for support. Now in her 80s, Goodman continues to advocate for former Willowbrook Class Members who receive services from the state. J. Rivera went on to dedicate his life to the disabled, eventually becoming a local administrator for The Cerebral Palsy Association of Nassau County. The 1994 documentary, Unforgotten: 25 Years After Willowbrook, profiled their stories in a series of interviews.[23]

The campaign also shaped the life of an unlikely activist named Bernard Carabello, whose interview by G. Rivera for the 1972 expose of Willowbrook catapulted him into an outspoken figure in the movement.[24] Carabello was a Puerto Rican man from the Lower East Side who spent eighteen years imprisoned within Willowbrook.[25] Misdiagnosed with “mental retardation” despite an acute intelligence only limited by cerebral palsy, Carabello assisted the early organizing efforts of two radical white doctors on the inside: Michael Wilkins and William Bronston. The product of national anti-racist and left-wing organizing around health disparities in communities of color, they were ardent supporters of both the Young Lords and Black Panthers.[26] Taking Carabello under their wing, they provided him with a political education borne of Malcom X’s speeches and revolutionary strategy from Mao’s Little Red Book.[27] In turn, Carabello furnished the doctors with intelligence from the various wards at Willowbrook. A living example of the crimes of institutionalization, his presence convinced the doctors that such places were only meant to destroy deserving lives not deemed livable by a corrupt medical establishment.

After the scandal, Carabello was released from Willowbrook and went on to become a prominent figure in the Independent Living Movement, which advocated for the capacity of the disabled to determine their own lives. After more than thirty years of service, Carabello recently retired from his position as an advocate from the New York State Office for People with Developmental Disabilities.

Another influential parent activist was Ida Rios, a Puerto Rican Bilingual Education teacher from Williamsburg, Brooklyn. In 1971, on one of her frequent visits to see her son Anthony at Willowbrook, she was introduced to a group of parents being organized by Wilkins and Bronston.[28] They were demanding that the administration address the many injustices occurring at the facility. But they were also inspired to think beyond the institution to create a system that served the disabled in the community instead of a life of confinement and willful neglect. Rios then went on to become a leader for the Willowbrook parents. She served as one of the translators for the Benevolent Society of Retarded Children, a parents’ group that also included hundreds of Spanish-speaking families whose relatives lived in the institution. Rios also became one of the leading plaintiffs in the suit leading to the 1975 Consent Decree, which represented the largest effort at deinstitutionalization undertaken in the United States.[29]

Yet her most important contribution was to serve, until a few years ago, as the long-time president of the Bronx Parents Association (BPA), representing hundreds of Black, Latinx, and White families. Before stepping down as president, Rios invoked a cautionary tone about the system created in the aftermath of Willowbrook. During the last several years, the BPA has been involved in one of several scandals whereby disabled residents at state group homes suffered physical and emotional abuse at the hands of staff.[30] While being interviewed, she spoke with a determination earned from years of fighting a system which refused to recognize the humanity of the disabled. Rios calls out for society’s “eternal vigilance” of any entity entrusted to care for those with disabilities who cannot care for themselves.[31]

The activism of Goodman, J. Rivera, Carabello, and Rios illustrate the unique lives affected during the campaign to abolish Willowbrook. They also, however, offered a counterpoint to dominant models of parent activism that had taken shape in the postwar period. Organizations such as the National Association for Retarded Children (NARC) lobbied to shift resources away from institutionalization and towards a more localized approach to health and educational services for disabled children.[32] Yet, as historians of parent advocacy have shown, these organizations constructed an idealized white, middle class model of the family in order to mobilize public sympathy and lend legitimacy to their cause.[33] In their quest to elide pre-WWII notions of cognitive disability as a genetic condition mainly affecting minorities, poor whites, and sexual deviants, these parents relied upon normalized forms of kinship and respectability.[34]

By contrast, the activists of color profiled here navigated a complex terrain of race, class, and disability that has been largely absent from historical narratives of both disability activism and civil rights activism. Their unique lives—as parents of disabled persons, activists with disabilities, or both—more closely resemble recent accounts of activists that do not fit neatly into either category.[35] Not only did parents of color with disabled children face discrimination in the larger society; they also understood that their children’s living conditions were impacted by the racial prejudice prevalent in the city.[36] Their stories thus enrich and expand our understanding of both disability and civil rights activism—not as an afterthought or appendage, but as integral to both.[37] Goodman, J. Rivera, Carabello, and Rios remind us that disability activism has always spoken different languages, lived in other skins, and loved across arbitrary boundaries.

Jorge Matos Valldejuli is an Assistant Professor & Reference Librarian at Hostos Community College, City University of New York. He is active around issues of disability on his campus as chair of a committee on the issue as well as supporting the Accessibility Resource Center extensively. His background is in Latinx/Latin American & Africana Studies but his research now involves the intersections of race, class and gender within Disability History. He is currently writing an article on the history of the Gouverneur Parents Association. He is a founding member of the National Coalition for Latinxs with Disabilities.

The author would like to thank Jose Rivera for reading and commenting on an earlier draft of this piece, and to acknowledge that a portion of the research for this article was made possible by a PSC-CUNY Research Award.

Further Reading

[1] Editorial, “Name the Gouverneur Parents Association Facility for Severely Multiple Handicapped Children After Percy Sutton,” New York Amsterdam News, April 24, 1993. Before migrating to New York in the 1950s, Willie Mae grew up in North Carolina with Wilbert Tatum and his siblings as recounted in the editorial.

[2] Jasmin K. Williams, “Apollo Pays Tribute to Beloved Harlem Giants,” New York Amsterdam News, May 27-June 2, 2010.      

[3] Ibid.

[4] See David J. Rothman and Sheila M. Rothman, The Willowbrook Wars: Bringing the Mentally Disabled into the Community (New Brunswick, N.J.: Transaction Publishers, 2005).

[5] James W. Trent, Jr., Inventing the Feeble Mind: A History of Mental Retardation in the United States (Berkeley: University of California Press, 1994), pp. 129-130.

[6] David Goode, Darryl B. Hill, Jean Reiss, and William Bronston, A History and Sociology of the Willowbrook State School (American Association on Intellectual and Developmental Disabilities, 2013), p. 5.

[7] “Latest News – Remembering Willowbrook: People Inc. Hosts OPWDD Exhibit Commemorating History as Closure Anniversary Nears.” People, Inc. (accessed 30 Oct. 2019), https://www.people-inc.org/news/2012/remembering_willowbrook_-2012-08-07-542/index.html.

[8] Sonia Song Ha-Lee, Building a Latino Civil Rights Movement: Puerto Ricans, African Americans, and the Pursuit of Racial Justice in New York City (Chapel Hill: The University of North Carolina Press, 2014), p. 3.

[9] Ibid.

[10] Kim Phillips-Fein, Fear City: New York’s Fiscal Crisis and the Rise of Austerity Politics (New York: Metropolitan Books, 2017), pp. 6-7.

[11] LorrinThomas, Puerto Rican Citizen: History and Political Identity in Twentieth Century New York City (Chicago: The University of Chicago Press, 2010), pp. 163-165.

[12] Rothman and Rothman, The Willowbrook Wars, p. 25.

[13] Geraldo Rivera, Willowbrook: A Report on How it is and Why it Doesn’t Have to be that Way (New York: Random House, 1972), p. 68.

[14] Darryl B. Hill, “Sexual Admissions: An Intersectional Analysis of Certification and Residency at Willowbrook State School (1950-1985),” Sexuality and Disability Vol. 34 (2016): 103-129. Information cited on pp. 104-105.

[15] Rothman and Rothman, The Willowbrook Wars, title.

[16] “State School Closing Protested by Parents,” The Staten Island Advance, April 27, 1971.

[17] “Transfer of Retarded to East Side Canceled,” New York Daily News, July 22, 1971. Accessed July 6, 2019, http://www.newspapers.com

[18] See Clarence Taylor, ed. Civil Rights in New York City: From World War II to the Giuliani Era (New York: Fordham University Press, 2011).

[19] Murray B. Schneps, I See Your Face Before Me: A Father’s Promise (Murray Schneps Publications, 2014), pp. 58-59.

[20] Nelson, Alondra. Body and Soul: The Black Panther Party and the Fight Against Medical Discrimination. Minneapolis, MN.: University of Minnesota Press, 2011, pp. 18-19.

[21] Goldberg, Joel H. and Allyn Z. Baum. “When Militants ‘Take Over” a City Hospital.” Hospital Physician, October 1970. Throughout 1970, several takeovers by the YLP and HRUM of Lincoln Hospital in the South Bronx occured. The groups demanded community control of the hospital as well as an overhaul of a wide array of services deemed substandard, discriminatory and at times criminal by the largely Black and Puerto Rican community being served.

[22] Jose Rivera (Relative of Former Gouverneur Resident), interviewed by Jorge Matos, Hicksville, New York, February 2018.

[23] “Unforgotten: Twenty-Five Years After Willowbrook,” Video file, 57:21. You Tube. Posted by FilmRise, May 15, 2014. https://www.youtube.com/watch?v=FcjRIZFQcUY&list=PLamKmwkYAWFkoPm4h2EyJtXuY1kCpQmUp&index=21&t=809s

[24] Geraldo Rivera, “A Special Kind of Courage: Bernard Carabello,” in Boricuas: Influential Puerto Rican Writings-An Anthology (New York: One World, 1995), p. 312-342.

[25] Bernard’s original Spanish surname is Caraballo. While institutionalized, it was regularly misspelled on his medical records taking various forms throughout his stay there. Bernard claims that one of his siblings legally changed his last name to its present form. Bernard Carabello (Former Willowbrook Resident), interviewed by Jorge Matos, New York, New York, February 2018.

[26] Michael Wilkins (Former Willowbrook Doctor), interviewed by Jorge Matos, New York, New York, May 2018.

[27] Ibid.

[28] Ida Rios (Mother of Former Willowbrook Resident), interviewed by Jorge Matos, Bronx, New York, May 2018.

[29] Celia W. Dugger, “Big Day for Ex-Residents of Center for the Retarded,” New York Times March 12, 1993.

[30] Benjamin Weiser, “$6 Million for Adults Who Were Punched and Spat At,” New York Times September 30, 2019.

[31] Ida Rios, interviewed by Jorge Matos, Bronx, New York, May 2018.

[32] Castles, Katherine. “Nice Average Americans”: Postwar Parents’ Groups and the Defense of the Normal Family.” In Mental Retardation in America: A Historical Reader, edited by Steven Noll and James W. Trent Jr., 351-370. New York: New York University Press, 2004, pp. 353-355.

[33] Ibid., 355-356.

[34] Ibid., 352.

[35] Lukin, Josh. “Disability and Blackness.” In The Disability Studies Reader, edited by Lennard J. Davis, 308-315. Fourth edition. New York: Routledge, 2013, pp. 308-309.

[36] Tomasson, Robert F. “Treatment of Children in State Facilities is Decried.” New York Times, January 20, 1972. Accessed 2019, ProQuest Historical Newspapers. Voluntary social service agencies in the city that received public funds to provide specialized care for children with mental health or developmental disabilities were noted for discriminatory practices by rejecting most Black and Puerto Rican children brought into family court while accepting most white youth. The state was thus forced to place the rejected children into various types of state institutions.

[37] Schweik, Susan. “Lomax’s Matrix: Disability, Solidarity, and the Black Power of 504.” In Foundations of Disability Studies, edited by Matthew Wappett and Katrina Arndt, 105-123. First edition. New York: Palgrave Macmillan, 2013, pp. 108-109.

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