Tag: stigma

Overcoming Stigma: Ryan White, Hamilton Heights, and Tony Cook’s Educational Crusade

Ryan in the hallway of Hamilton Heights High School, 1987, courtesy of Time & Life Magazine.

In the early years of the AIDS crisis, when fear and misunderstanding accompanied any mention of the disease, schools across the nation faced a decision: whether to allow students diagnosed with AIDS to attend classes. In October 1985, a New York school district barred children from attending classes after officials learned that their mothers’ boyfriends had been diagnosed with the disease. When a different New York district admitted a student with AIDS around that same time, attendance dropped by 25%, despite the fact that the specific school the child was attending was kept confidential. In Swansea, Massachusetts, school officials decided to “do the right thing” by admitting a teenager living with AIDS—only two families decided to keep their children from school after the decision. A year earlier, in late 1984, a Dade County, Florida school admitted triplets who had been diagnosed with AIDS, but kept the siblings isolated from the rest of the students.

The (Elwood) Call-Leader, Oct. 04, 1985, 1.
Ryan White’s physician listens to his lungs while his mother, Jeanne White, looks on, courtesy of Time & Life Magazine.

While new controversies sprung up around the nation, one school in Central Indiana shot to the forefront of the debate in the summer of 1985. Ryan White, a 7th grade student in Howard County, was diagnosed with AIDS in December 1984 after contracting the disease from a contaminated hemophilia treatment. For several months, he was too ill to return to school, but in the spring of 1985 he began voicing his desire to return to his normal life by resuming classes at Western Middle School. When his mother met with school officials to talk about this possibility, she was met with resistance. Concerns about the health of other students, and that of Ryan himself, whose immune system had been ravaged by his illness, gave officials pause. In one of the earliest news articles about the issue, Western School Superintendent J.O. Smith asked:

You tell me. What would you do? . . . I don’t know. We’ve asked the State Board of Health. We’re expecting something from them. But nobody has anything to go by. Everybody wanted to know what they’re doing in other places. But we don’t have any precedent for this.

These two headlines ran within one day of each other in October 1984. Top: York Daily Record, October 11, 1984, 23. Bottom: San Francisco Examiner, October 10, 1984, 15.

He was right. While a few schools had faced similar situations, the issues surrounding a child with AIDS attending school, namely, the risk this posed to other students, were far from settled. At this time, new and conflicting information came out at a dizzying pace. Most reports held that AIDS was not transmissible through casual contact, but others implied that you couldn’t rule out the possibility of it being passed through saliva, which would have made it a much bigger threat. With so much information—and misinformation—in the news cycle, the desire to hear from health authorities on the topic was understandable.

Three months later, the Board of Health released a document containing detailed guidelines for children with AIDS attending school:

AIDS/ARC children should be allowed to attend school as long as they behave acceptably . . . and have no uncoverable sores or skin eruptions. Routine and standard procedures should be used to clean up after a child has an accident or injury at school.

Despite this recommendation, Western School Corporation officials continued to deny Ryan admittance to class. Instead, they set up a remote learning system. From the confines of his bedroom, Ryan dialed in to his classes via telephone and listened to his teachers lecture. He missed out on visual aids, class participation, and sometimes the lectures themselves, as the line was often garbled or disconnected.

Ryan participating in the Western School Corporation’s remote learning system from his home, courtesy of Getty Images.

A November ruling, this time by the Department of Education, confirmed the Board of Health’s assertion that Ryan should be admitted to class:

The child is to be admitted to the regular classrooms of the school at such times as the child’s health allows in accordance with the Indiana State Board of Health guidelines.

Ryan returned to school for one day before the school filed an appeal and he was once again removed from class. A series of rulings, appeals, and other legal filings followed, ultimately ending when the Indiana Court of Appeals declined to hear further arguments and Ryan finally got what he and his family had fought so hard for—returning to classes for good. However, upon his August 25, 1986 return, Ryan faced intense discrimination from classmates and other community members. Addressing the Presidential Commission on the HIV Epidemic in 1988, Ryan recalled some of the more poignant moments from his time in Kokomo:

Some restaurants threw away my dishes, my school locker was vandalized inside and folders were marked ‘fag’ and other obscenities. I was labeled a troublemaker, my mom an unfit mother, and I was not welcome anywhere. People would get up and leave so they would not have to sit anywhere near me. Even at church, people would not shake my hand.

Because of these negative hometown experiences and his desire to evade oppressive media coverage, Ryan asked his mother if they could move out of Howard County. When the family decided to settle in Cicero, they couldn’t have known how drastically different their lives were about to become.

Ryan poses with students from Hamilton Heights Middle School, along with principle Tony Cook (right), courtesy of the Hamilton County Times.

Tony Cook, who was the Hamilton Heights High School principal in the 1980s and is now a State Representative, heard through informal channels that Ryan’s family was moving into his school district in April 1987. The degree of media coverage surrounding Ryan’s battle to attend classes meant that Cook was well aware that his community’s reaction to the White family’s arrival would be heavily scrutinized. Thus, he set out on an AIDS educational crusade the likes of which had not been seen before.

With the backing of his superintendent and school board, Cook quickly made the decision that not only would Ryan be admitted to the school, but there would be no restrictions placed on what Ryan was able to do in school (while in class in Western Middle School, he was not able to attend gym, used a separate restroom, and ate off of disposable trays with plastic utensils.) After gathering AIDS-related materials from the Indiana State Board of Health, the Center for Disease Control, major newspapers, and scientific journals, Tony Cook turned what was supposed to be his summer break into a months-long educational campaign.

Throughout the coming months, Cook spoke about AIDS at Kiwanis groups, Rotary Clubs, churches, and to any group that asked. He sat in living rooms and at kitchen tables throughout the community, personally addressing the concerns of fellow citizens. The school developed a collection of AIDS education materials that could be checked out by students. Tony contacted members of the student government to ask them to act as student ambassadors, advocating on Ryan’s behalf with their fellow students and the media. The school staff went through additional training to prepare them for the possibility of a blood or other biohazard spill. By the time the school year came around, Cicero, Arcadia, and the surrounding area had some of the best informed populations when it came to AIDS.

The first few days of the 1987-1988 school year at Hamilton Heights High School were peppered with convocations in which Cook addressed each grade level to assuage any remaining concerns over sharing classrooms and hallways with Ryan. Students were encouraged to ask questions and support was provided for any feeling uncomfortable with the situation. Administration also offered to change class schedules to avoid conflict.

Ryan with classmates at Hamilton Heights High School, courtesy of Britannica.com.

On Ryan’s first day of class, which was a week after school started, the campaign seemed to have been successful. As the press surrounded him on his way out, he smiled and said, “It went really great—really. Everybody was real nice and friendly.” Later, when speaking in front of the Presidential Commission on the HIV Epidemic, Ryan attributed his positive experiences at Hamilton Heights directly to the education campaign:

I am a normal, happy teenager again . . . I’m just one of the kids, and all because the students at Hamilton Heights High School listened to the facts, educated their parents and themselves, and believed in me . . . Hamilton Heights High School is proof that AIDS education in schools works.

When reflecting on the experience in a recent interview, Representative Cook spoke to the power of education to overcome even the most intense fear, “Yes, there were some folks that were uneasy and nervous, but we did see education overcome. And we saw a community that . . . trusted us.” One obstacle Ryan and the school faced was the sheer amount of publicity surrounding his move to Hamilton County. Hamilton Heights High School was an open campus–students traveled between three different buildings throughout the day–which would have made having members of the media on campus both distracting and potentially dangerous. But restricting access all together also wasn’t possible, as Ryan was a nationally-known figure by this time. The compromise was to have weekly press conferences during which Ryan, student ambassadors, and faculty could answer questions and update the press about the goings-on at the school, a practice that persisted throughout Ryan’s first full semester at Hamilton Heights.

Ryan in April 1988, courtesy of Time Magazine.

After that first semester, the media began to lose interest in the story as it became more and more apparent that a mass walk-out or other dramatic event would not take place. The first time Tony Cook met Ryan, Cook asked why Ryan wanted so badly to attend school. During our interview with Representative Cook, he recalled that the fifteen-year-old Ryan, who by that time had been in the middle of a media storm for nearly two years, replied “’I just want to be a normal kid . . . I may die. So, for me, it’s important that I try to experience the high school experience as well as I can.” At Hamilton Heights High School, Ryan was able to do just that.

In the years following Ryan’s acceptance into Hamilton Heights High School, Ryan, Tony Cook, and others who had been involved in the educational program traveled around the country advocating for increased AIDS education. By August 1988, just one year after Ryan’s first day at Hamilton Heights, the Children’s Museum of Indianapolis began developing an exhibit centering on the issue:

While Ryan White zips around the country speaking out for AIDS education, the students of Hamilton Heights High School are telling children visiting The Children’s Museum in Indianapolis what it was like accepting Ryan into school . . . ‘I think everyone was uneasy at first,’ said one student on the videotape about Ryan’s coming to the school. ‘Education eased a lot of people’s minds,’ said another student.

Sixth grade students listen to Heather Stephenson, a high school friend of Ryan, about bullying in Ryan’s room at the Power of Children exhibit, courtesy of the Washington Times.

Ryan White died on April 15, 1990 after being admitted to Riley Hospital for Children with a respiratory tract infection. In 2001, Ryan’s mother, Jeanne, donated the contents of his bedroom to the Children’s Museum of Indianapolis, where it has been painstakingly recreated as part of the “Power of Children” exhibit.  The museum also houses thousands of letters written to Ryan and his family throughout his illness. You can read the letters and even help transcribe them here.

Stuck in the Poorhouse: The Complexity of Poverty

Steuben County Asylum
Steuben County Asylum (author’s photograph).

The Steuben County Asylum near I-69 in northeastern Indiana represents two contrasting ideals of poverty care. On the one hand, this imposing building on the rural landscape embodied the modern ideal of an end to poverty through scientific principles. In spite of the U.S. industrial economy of the later 19th century, marked by frequent panics and recessions, a new poor care system held out the hope that all indigent persons could be retrained and readied to work in the modern industrial world.  The new system would provide a safety net supporting those through the hard years and would help impoverished people develop improved habits in a healthy and orderly atmosphere. On the other hand, this building symbolized failure and loss of place in the community. To be a resident of this facility required separation from society and often induced a lifelong stigma of shame.

These institutions represented both a severe solution meant to frighten the “lazy” into working harder and a belief in a safety net to support those living on the margins. [1] This was especially important in an era when layoffs were not supplemented by benefits like workers compensation. Across rural America, there was fear associated with the various names for asylums: almshouses, county farms and infirmaries, poor farms, county homes, workhouses, and “the pogey.”

The Indianapolis Journal, October 19, 1888, accessed Newspapers.com.

Traditional poor relief (after private charities and local churches were exhausted) fell to local government. This was called “outdoor relief” because the poor or destitute were helped where they lived. To contain costs, the sheriff might “warn out” (or throw out) potential pauper residents to discourage poor people from staying there. Officials often employed this method to keep immigrants, especially the Irish, from settling in their town.

If the family could not care for an indigent resident, a landowner might take that person in on the lowest bid for room and board.  By the 1820s, this informal arrangement was rapidly supplanted by an increasingly standardized system recognizing one place as a county poorhouse. The professionalization of these institutions focused on isolating each class of patient from what social reformers thought was the cause of their ailments or bad habits.  The system was intended to instill a culture of order on the disorder of their lives.  The enforced order would help cure the issues they faced. However, most residents used the farm only for periodic stays during times of unemployment and sickness.

In line with the rest of the nation, Indiana initiated its statewide system of county poor asylums.[2] In 1821, the state legislature approved Indiana’s first poorhouse in Knox County.  Following the national standards for poorhouse improvements, promoted in prescriptive literature, many counties built what were called “model homes” by the later nineteenth century.  These were modern buildings constructed to meet the current standards of that time. These asylums even provided libraries for residents to use in preparation for a changed life outside the asylum.[3]

County Poor Farm, Huntington, Indiana, courtesy of the Huntington City-Township Public Library, accessed Indiana Memory Digital Collections.

Many rural almshouses were working farms, providing food for residents and a profit to the county government.  The Democrat newspaper of Huntington County praised its superintendent in 1871 for keeping the farm as an “almost self-sustaining . . . charitable institution.” Efficiency and thrift were valued far higher than any other management trait.[4]  These practices led to abuses of a very vulnerable group in society. To create a more orderly life for their residents, almshouses increased the level of isolation and separation in the homes.  This policy is reflected in the houses’ physical form as it changed during the 19th century.

The Democrat provided a brief glimpse into the Huntington County almshouse during February of 1871.  The paper listed 18 assorted inmates, but ten or twelve more typically resided there during the year.  Most residents were temporally admitted during sicknesses and job slowdowns.  Most poorhouses apparently hosted a few long-term residents and sometimes children were born there too.  The farm around the almshouse provided work for residents capable of manual labor.  One resident at the Huntington Almshouse was the full-time farm hand.  Others worked on the farm or in the almshouse kitchen.[5]

Between 1830 and 1900, four stages in almshouse design demonstrated a stronger commitment to scientific poor care.  The first stage involved converting a portion of a private house to accommodate paupers placed in the home owner’s care. The owners made no effort to separate the residents, and they were assigned farm work, as able, to help earn their keep.  The famous 1872 poem by Will Carleton “Over the Hill to the Poor House” was inspired by his experience at just such a home in Hillsdale, Michigan. The lack of family support, as well as old age temporarily landed elderly mothers in the poor house.[6]

In the second stage, the county purchased a farm to use for the care of the poor.  Other buildings might be constructed for dorm facilities for the majority of the residents.

The next stage was the first real attempt at building a custom facility for poor care.  The Steuben County Asylum, built in 1885, appears to match this third stage.  The strong center area indicates there was a public entrance with rooms for the County Superintendent of the Poor. There is room enough to separate men from women and to create the ordered environment that could be both helpful and oppressive.

Poorhouse in Adams County Indiana, courtesy of http://www.poorhousestory.com.

The fourth stage is the full scale, scientifically approved poor house.  As can be seen in the illustration above this facility is a massive element in the landscape.  The very obvious three-part construction is easy to recognize.  Some of you will have seen buildings like this around rural Indiana. They seem out-of-place among local farms.  They may be marked by a road name such as Asylum Road or County Farm Road.  The well-used 1911 textbook, The Almshouse Construction, and Management (written in Indiana) noted that asylums must be near the center of the region they serve, allow for complete segregation of the sexes, provide an abundance of sunlight and fresh air, and be designed for convenient access for administrators to the whole house. [7]

They are designed to house men and women in completely separate wings with public space in a center section.  Usually, the County Superintendent of the Poor lived in the upstairs of the center section.  Larger homes had infirmaries for men and for women.  This feature became more common in the early 20th century as the almshouse became more of an old age home rather than a place of refuge from destitution.

Jefferson County Poor Farm, circa 1915, courtesy of the Indiana Historical Society.

When I first started researching this theme I interviewed staff at the Steuben County Asylum, which had been completely converted to a senior rest home.  The problem was that many elderly residents refused to consider living there out of the memory of what that building had once meant.[8]  Even in the 1980s, seniors related residency in the poorhouse with a loss of freedom and personal dignity.  The company managing the care facility failed to grasp the public memory of the County Asylum on that generation.  Ironically, the current generation of seniors (Baby Boomers) might laugh at residing in a former poorhouse perhaps as a way of poking fun at their elders’ fears.

County poorhouses should remain a visual reminder of the hazards inherent in reform efforts.  Even with good intentions, abuses of vulnerable people occurred.  The poorhouse had little to regulate it except mixed national ideals and local attitudes.  Torn between purposes of punishment and rescue, poorhouses failed to cure poverty.  The complexity of poverty caused reformers and politicians endless pains.  We might gain some comfort that citizens and politicians before us found poverty as difficult to manage as we do now.

 

[1] David Wagner, The Poorhouse: America’s Forgotten Institution, (Lanham MD: Rowman & Littlefield Pub., 2005), 19.

[2] Kayla Hassett, “The County Home in Indiana: A Forgotten Response to Poverty and Disability,” (Masters Thesis, Ball State University, May 2013), 13.

[3] See report by Henry N. Sanborn, “Institution, Libraries: The Outlook in Indiana” Forty-Third Annual Meeting Conference of Charities and Correction. (Indianapolis, IN 1916), 367-371.

[4] “The County Alms-House Its General Condition-The Number and Character of its Inmates,” The Democrat, (Huntington, Indiana), February 2, 1871, accessed www.poorhousestory.com.

[5] Ibid.

[6] See Jerome A. Fallon, The Will Carleton Poorhouse: A Memorial to a Man, a Dwelling, and a Poem, (Hillsdale: Hillsdale Historical Society, 1989), 22-23.

[7] Alexander Johnson, The Almshouse Construction and Management (New York: Russell Sage Foundation, 1911), 8.

[8] Staff Steuben County Asylum interview by author, Fall 1994.

 

Further Reading

  1. Hassett, Kayla. “The County Home in Indiana: A Forgotten Response to Poverty and Disability.” Masters Thesis, Ball State University, May 2013.
  2. Katz, Michael B. In the Shadow of the Poorhouse: A Social History of Welfare in America. New York: Basic Books, Inc., 1986.
  3. Thomas D. Mackie, “Over the Hill to the Poorhouse: A Glimpse at the County Farms of Southern Michigan, 1850s-1920s.” PAST, 21 (1998).
  4. Rothman, David J. The Discovery of the Asylum: Social Order and Disorder in the New Republic. (Revised Ed) Boston: Backbay Books, 1990.
  5. Wagner, David, The Poorhouse: America’s Forgotten Institution. Lanham, MD: Rowman & Littlefield Inc.,2005.
  6. A private research web page titled Poorhouse Story provides images, primary sources, and readings for poorhouses and related agencies around the United States. They can be accessed at http://www.poorhousestory.com.