Legacies: Disability Histories of Pennsylvania by Historical Society of Pennsylvania 2014 Annual Report

The Historical Society of PENNSYLVANIA

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V O L U M E 1 7, N U M B E R 2

DISABILITY HISTORIES of Pennsylvania

Recognizing Our Supporters O F F I C E R S O F TH E B O A R D O F C O U N C I LO R S

Bruce K. Fenton Merchant shaking hands with customer, small grocery store. Spanish Merchants Association of Philadelphia Photographs.

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Timothy R. Schantz Executive Vice Chair

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Treasurer and Vice Chair, Planning and Finance

art of the Historical Society of Pennsylvania’s mission is to ensure that the stories of ALL Americans are documented and shared—particularly the stories of those who have typically been marginalized by the traditional historical narrative.

The articles within this issue of Pennsylvania Legacies about the history of disability in Pennsylvania are no exception. Another initiative that directly reflects this mission is the Audience Embedded project. Audience Embedded invites audiences to mine the archival collections of the HSP and Taller Puertorriqueño, giving community members an active role in how the city’s cultural heritage is interpreted and presented. The embedded audience will investigate the archival collections of both organizations for connections among Latinos and non-Latinos around the universal themes of migration and translocation. A team of technical and artistic advisors, including playwright/director Ain Gordon, visual artist Michelle Ortiz, public historians, and scholars, will guide the embedded audience in their exploration of the two archives, as well as a creative process of program development. In year two of the project, HSP will present public programs based on the participants’ work. “This project comes at just the right time for HSP,” said Beth Twiss Houting, HSP’s

Senior Director of Programs and Services. “We have recommitted ourselves to creating programs that prove the relevance of the past for the present (and the future) at the same time that we are working hard to share the stories of populations left out of traditional histories. We are very excited to work with Taller to together uncover and illuminate the contours and ideas about neighborhoods in Philadelphia, especially for Puerto Rican residents.” Audience Embedded is made possible through the support of The Pew Center for Arts & Heritage. This summer, the Center announced 53 grants in support of the Philadelphia region’s cultural organizations and artists, including HSP in collaboration with Taller. The 2017 awards total more than $10.3 million and provide funding for 12 new Pew fellowships, 39 project grants, and two advancement grants. HSP earnestly recognizes the Center for its support of our project and for all it does for the Philadelphia community’s arts and culture.

HSP’s mission is to make history relevant and exhilarating to all by creating access and delivering content for 21st-century audiences. To learn more about the Historical Society of Pennsylvania and how you can support its extraordinary collections, its programs, and its publications, please visit our website at www.hsp.org or contact Jon-Chris Hatalski, Director of Institutional Development and Grants Management, at jchatalski@hsp.org or 215-732-6200 ext. 220.

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P E N N SY LV A N I A LE G A C I E S

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LEGACIES

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“Confined to Crutches”: James Logan and the Material Culture of Disability in Early America by

Nicole Belolan

2 Note from the Editor

3 Window on the Collections Rachel Moloshok

“Detect early; Protect always”: Philadelphia Physicians and the Gospel of Eugenics by

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Teachers’ Turn by

Dennis B. Downey

Jessica Tyson

34 Generations by

Kathleen Brandt

36 Legacies for Kids by

Christopher A. Brown

38 Book and Website Reviews by

Benjamin Goldman Brendon Floyd

and

Mildred Scott: A Pennsylvania Woman at the Heart of the Early Disability Rights Movement by

40 Food for Thought Jean Searle Mark Friedman

by with

Audra Jennings ON TH E COVE R

Threshold of Liberation: The Little-Known History of Deinstitutionalization of Americans with Developmental Disabilities in the Late 20th Century by

James W. Conroy

Painting of a disability pride parade marching toward Philadelphia’s City Hall, created in 2007 by Kathryn Pannepacker and artists from the Independence Arts Studio. Photo courtesy of Rachel Moloshok. This painting can be found in the lobby of Liberty Resources, Inc., a Philadelphia-based center that supports civil rights and equal access to all aspects of community life for persons with disabilities. Unless otherwise noted, all images in Pennsylvania Legacies are from the collections of the Historical Society of Pennsylvania. © The Historical Society of Pennsylvania, 2017. All rights reserved. ISSN 1544-6360 (print); ISSN 2169-687X (online)

NOTE FROM THE EDITOR

Abling and Disabling in Pennsylvania History

he average American adult can likely point to Helen Keller or Franklin Delano Roosevelt as an example of a historic figure with a disability. Still, as my wheelchair-using historian husband and I are reminded when our failed attempts to enter shops, apartments, public transportation systems, and, yes, even historical libraries are shrugged away with explanations such as “oh, this structure is x years old,” disability is often thought of as being somehow without history. Although Americans of all eras have encountered or experienced disability in some form, disability is rarely depicted in historic monuments, paintings, or reenactments, rarely mentioned in history books, and rarely considered as a category of historical analysis in the way that race, gender, and class now are. People with disabilities are one of the largest, if not the largest, minority group in the United States today, with both the US Census Bureau and the Centers for Disease Control and Prevention reporting in 2015 that approximately one in five Americans has some form of disability, and yet, the history of disabled people— like the history of disability itself—is little understood. Perhaps this is because people with disabilities are disproportionately poor and underrepresented in politics and higher education. Perhaps it is because the disabled community is so diverse, encompassing individuals of all ages, races, ethnicities, genders, religions, and socioeconomic statuses—to say nothing of physical, genetic, sensory, and mental differences. Perhaps it is because it is only very recently, thanks to federal legislation brought about as a result of decades of sustained activism and advocacy, that people with disabilities are thought of as having inherent rights to inclusion in everyday civic and political life. Thankfully, people with disabilities are increasingly visible members of society and increasingly the subjects—as well as authors—of historical scholarship. Much attention has rightfully been paid to the disability rights movement of the 1960s onward, which has seen disabled Americans protesting for accessible public buildings and

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transportation systems, crawling the steps of the US Capitol to advocate for the passage of the 1990 Americans with Disabilities Act— the latest major US civil rights legislation— and, most recently, occupying senatorial offices in demonstrations against proposed cuts to Medicaid and repeal of the Affordable Care Act. But this history has roots that reach far beyond the late 20th century, and many of its seminal events took place in and around Pennsylvania. From the nation’s founding period, Pennsylvanians with disabilities adapted and improvised their homes, tools, and environments in order to maximize their ability to get along. It was in Philadelphia that some of the nation’s first schools for blind, deaf, and “crippled” individuals were founded, several of which still exist today. Pennsylvania was the site of the first major institution for educating children with intellectual disabilities as well as a spawning ground for eugenicist theories that justified segregating, incarcerating, sterilizing, and even experimenting on such individuals. Fittingly, then, Pennsylvania also became the place where the horrors of institutionalization were exposed and where groundbreaking advocacy campaigns led to the mass deinstitutionalization of people with disabilities throughout the United States. These fights for the rights of Pennsylvanians with various disabilities influenced similar movements nationwide that won Americans with disabilities the right to receive appropriate public education, live in their own communities, and receive appropriate treatment rather than being subjected to the judgements of bureaucrats. The articles in this issue of Legacies explore some of these key moments in the commonwealth’s influential disability history. Nicole Belolan explores how early Pennsylvanians with disabilities used objects such as crutches, carriages, easy chairs, and medical devices to maximize their mobility and independence. Dennis Downey reveals how Philadelphia-area physicians and reformers made the commonwealth ground zero for the proliferation of eugenicist theories and the mass institutionalization of individuals

with disabilities. Audra Jennings traces the life and contributions of Mildred Scott, a Pennsylvanian woman who was instrumental in the work of the American Federation for the Physically Handicapped, the United States’ first national, cross-disability rights organization. And James W. Conroy shares how the revelation of the horrific abuses at the Pennhurst State School and Hospital led to an effective deinstitutionalization movement that spurred advocates to secure essential rights for people with disabilities—in Pennsylvania, across the nation, and throughout the world. Our Window on the Collections installment discusses resources at the Historical Society of Pennsylvania that shed light on the education of Pennsylvanians with disabilities, focusing on the Pennsylvania Home Teaching Society for the Blind Lantern Slide Collection. Our Generations column provides family history researchers with tips and tools for investigating ancestors with disabilities, including those who may have been institutionalized. Our Teacher’s Turn column discusses ways that educators may teach disability history in their classroom, and our book and website reviews highlight sources for further exploration. Finally, Jean Searle, a self-advocate and co-president of the Pennhurst Memorial and Preservation Alliance, shares her experiences and reflects on the importance of studying disability history. Although this slim volume can hardly do justice to the rich and diverse histories of disability in Pennsylvania, I hope that these articles will provoke greater appreciation for this important field of study and motivate readers to explore this topic further. There are many more stories yet to tell. Rachel Moloshok Managing Editor of Publications and Associate Manager of Scholarly Programs

WINDOW ON THE COLLECTIONS

Teaching “the talent of blindness” BY RACHEL MOLOSHOK

he Histor ic al S ociet y of Pennsylvania boasts several collections related to the education of people with sensory differences, from Roberts Vaux Papers, which detail efforts to establish schools for blind and deaf in Philadelphia in the early 1800s, to numerous pamphlets and publications of some of the earliest educational institutions for children with disabilities, such as the Pennsylvania Institution for the Deaf and Dumb and the Pennsylvania Institution for the Instruction of the Blind. Most of these famous institutions were founded by nondisabled philanthropists and focused on providing basic education and vocational training for children with disabilities. However, the HSP also houses a unique collection that sheds light on a different sort of educational organization. The images

found in the Pennsylvania Home Teaching Society for the Blind Lantern Slide Collection show the workings of a society that was founded by a blind individual, employed primarily blind teachers, and focused on educating blind adults. The Pennsylvania Home Teaching Society (PHTS) was founded in 1882, when Dr. William Moon and his daughter, Adelaide, visited Philadelphia. Dr. Moon, a native of England, experienced progressive vision loss following a childhood bout with scarlet fever and lost his sight entirely by 1840, at age 20. He learned the various systems of embossed writing available at the time and became a teacher to other blind students. Finding that many of his pupils had difficulty learning these writing systems, he invented his own form of embossed type—the Moon alphabet—in 1845. In 1856, he cofounded the first Home

Teaching Society for the Blind in London, an organization dedicated to sending teachers to instruct blind students in their own homes and to circulating a growing library of Moon type books to blind readers. As Moon explained his efforts, “God has been pleased to give me the talent of blindness, and I have tried to do my best to use my talent.” In Philadelphia, William and Adelaide Moon found an ally in John P. Rhoads, treasurer of the Pennsylvania Bible Society. Rhoads established a library of embossed Moon books at the headquarters of the Bible Society at 701 Walnut Street; became cofounder of a Home Teaching Society based in Philadelphia, hiring and supervising the organization’s first teacher; and oversaw the mailing of embossed works to readers throughout the commonwealth and the nation.

(LEFT) Young

Philadelphian Cynthia Scaricaciottolli, ready to depart for summer camp at Camp Daddy Allen in the Poconos, circa July 3, 1944. Philadelphia Record Photo Morgue. Edgar “Daddy” Allen was the founder of the National Society for Crippled Children, now known as the Easterseals; (BELOW) PHTS window display at 1935 Chestnut Street, Philadelphia, with poster boards featuring the Moon and Braille alphabets. Pennsylvania Home Teaching Society and Free Circulating Library for the Blind Lantern Slides.

Fall 2017 Pennsylvania Legacies

PHTS teacher James W. Moore with student Myra V. Wilds. Pennsylvania Home Teaching Society and Free Circulating Library for the Blind Lantern Slides.

Following her father’s death, Adelaide Moon became president of the Moon Society, based in Brighton, England. In 1898, she again visited Philadelphia, this time accompanied by her brother, Robert C. Moon, who settled in the city and became a renowned ophthalmologist and secretary of Philadelphia’s Home Teaching Society. That year, the society was reorganized. By early 1889, the recently opened Free Library of Philadelphia, then located at 1217–1221 Chestnut Street, had, according to the PHTS’s annual report, taken over the organization’s library of embossed books and established a reading room for the blind at their headquarters, “as well as consenting to superintend the loaning of the books to the blind upon the Society’s roll of readers.” In 1901, the organization was incorporated as the Pennsylvania Teaching Society and Free Circulating Library for the Blind. A few years later, the PHTS was able to expand its profile considerably as a result of two developments: an April 27, 1904, Act of Congress allowed embossed books for the blind to be mailed free of charge, greatly increasing the number of books that could be circulated to readers in far-flung areas, and the PHTS sent an exhibition to the World’s Fair held in St. Louis, at which

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the society’s most senior teacher, James W. Moore, provided instruction to visitors from throughout the United States territories and the world. Robert Moon delivered an address on “The Education of the Blind, with Especial Reference to the Use of the Moon Alphabet” to an audience in St. Louis on September 10, 1904, in which he argued that the Pennsylvania Home Teaching Society and the Moon system of writing filled important gaps, especially for blind adults. Whereas visually impaired children were largely able to receive instruction at special schools for the blind in Pennsylvania, the majority of the commonwealth’s blind population were people over the age of 40 who had lost their vision long after their school days were over. In-home instruction was valuable to these individuals, he explained, “for it was soon realized that most of the adult blind shrank from appearing much in public, and but few would stir out of doors without a guide.” The PHTS’s students also benefitted greatly from instruction by teachers who were blind themselves. One student, A. H. Marshall of Camden, New Jersey, wrote of James W. Moore in 1900, “Had you sent me some one who could see, I do not think I would have learned so rapidly, but when I knew that he

too was blind . . . I was induced to do my level best and found it not half so hard as I thought it must be.” Furthermore, Moon argued, among the various systems of raised type available to the blind, Moon was the easiest for adults to learn. In the United States at the turn of the 20th century, a variety of embossed writing systems vied for supremacy. Different styles of Roman line types—essentially ordinary letters in raised form—proliferated, with the Boston line type developed at the Perkins School for the Blind particularly prevalent. At the same time, dotted code systems such as New York Point and Braille were gaining in popularity. Blind readers of all ages found dotted systems easier to decipher through touch, but older readers often found it difficult to master the codes and contractions embedded in them after years of reading based on the standard alphabet. Such individuals, Robert Moon described, were “generally incredulous” at the idea of being able to read again, “but if we can only induce them to place their fingers upon an O or an I or an L of the Moon embossed alphabet, they are astonished and delighted to recognize those old familiar letters and they easily learn the rest of the alphabet.”

Moon type was neither a dotted nor a true Roman line system. As Robert Moon explained it, its alphabet was composed “principally of the Roman letters . . . composed of the simplest geometrical forms,” with some new characters substituted for hard-to-read letters. One of the PHTS’s students, identified as “Mr. R.” in the organization’s 1900 report, remarked that the Moon system “reminded him of the shorthand signs with which he had once been familiar” as a former stenographer. According to its proponents, Moon was also simply easier for those with lessened finger sensitivity to perceive, in comparison to Roman line or dotted types. And whereas Braille or New York Point often proved too complicated for novice readers, Robert Moon reported, “several intelligent adults who have had the sense of touch cultivated by the use of the Moon type, have afterward learned a dotted system.” Moon concluded his address by expressing the hope that “others may be encouraged and stimulated to return to their homes, determined to establish similar societies in their own neighborhoods.” The images in HSP’s Pennsylvania Home Teaching Society for the Blind Lantern Slide

collection date from the founding of the original Moon Society in England through the early 1930s. The bulk of the slides were used to illustrate a lecture delivered by then PHTS president James Anders at the society’s 1917 annual meeting. They depict Dr. William Moon, examples of Moon type in comparison with other embossed types, the day-to-day work of embossing, binding, and circulating books at the Moon Society in England, the founders of the PHTS, and the society’s exhibition at the St. Louis World’s Fair, as well as the diploma and gold medal the exhibition received. Subsequent slides show the work of PHTS teachers in western Pennsylvania and highlight the collection of Moon books housed since 1907 at the Carnegie Library of Pittsburgh’s Department of the Blind. The slides also show the Free Library of Philadelphia’s Department of the Blind, which moved to 204 South 13th Street in 1910, and Anders’s lecture notes mention “the new Free Library of Philadelphia, which is to be built at Logan Square,” at which was planned “a commodious Department for the Blind.”

The PHTS eventually dissolved in 1976, decades after Braille became the national standard for printing for the blind. The Moon system is still in use by a small minority of readers today, however, and the Free Library of Philadelphia’s Library for the Blind and Physically Handicapped continues to serve Pennsylvanians who have difficulty reading due to vision challenges, physical impairments, and other disabilities. The HSP’s collection of PHTS lantern slides provide visual evidence not just of the organization’s unique history but of a contentious and possibility-filled period in the history of blind culture in the United States—an era in which new institutions, inventions, and scientific advancements were upending expectations for how visionimpaired Americans of all ages might live and in which a variety of writing systems vied for popularity, respectability, and market share. Rachel Moloshok is the managing editor of publications and associate manager of scholarly programs at the Historical Society of Pennsylvania.

(LEFT) Using

a grooved board, a blind reader in western Pennsylvania writes to request a new book; (RIGHT) A blind PHTS home teacher gives typewriting lessons to a student in Erie. Pennsylvania Home Teaching Society and Free Circulating Library for the Blind Lantern Slides.

Fall 2017 Pennsylvania Legacies

James Logan and the Material Culture of Disability in Early America BY NICOLE BELOLAN

Pennsylvania Legacies Fall 2017

“The Cripple” or “Street Scene with Cripple,” undated drawing by Benjamin West. Benjamin West Drawings.

alking outside his home in January of 1728, 54-year-old James Logan (1674– 1751) slipped on a patch of ice in his yard. Logan, secretary to William Penn and later, the Penn family, recounted in a letter to his brother, William, that his feet “flew violently from under [him],” and his entire body came crashing down on his left “thigh,” or hip. As we know from our own experiences, a fall can change a person’s life. Indeed, Logan explained to the Penns that his “retire[ment] with [his] family into the Countrey” would become more certain as a result of his injury.

Fall 2017 Pennsylvania Legacies

Watercolor of Stenton, by Eugene Castello, circa 1888; (RIGHT) Undated portrait of James Logan. Historical Society of Pennsylvania Portrait Collection; (OPPOSITE) A fictional example of a homemade “easy chair” used by a disabled man is shown in this illustration for Catharine Maria Sedgwick’s novel The City Clerk and His Sister (1856). Courtesy, American Antiquarian Society. (LEFT)

Thanks to Logan’s voluminous letters at the Historical Society of Pennsylvania, we can learn a lot about the material experience of that “early” retirement. For at least 20 years after Logan broke his hip in 1728, whether discussing business, politics, science, classical languages, books, or his family with his many correspondents, Logan wrote often about the impairment caused by a quick slip of his footing that cold January day. How did people like Logan live with physical disability before the emergence of the specialized, standardized medical furniture industry in the late 19th century and the expectation of physical accommodations in public space in the 20th century? Early Americans improvised when it came to living with physical disability. This improvisation involved both professional and lay medical practice. A few months after his injury, Logan explained to his brother that his injured limb remained so “loose” that he spent hours convalescing in bed and “move[d] it w[i]th [his] hand almost any way.” Probably hoping to get back on his feet, Logan consulted with doctors. In one 1743 letter, looking back on the days and months following his injury, Logan reflected that because of the “ignorance” of local medical experts when it came to assessing what Logan concluded was a fracture, a “Cure became impossible.” Logan would not be deterred and reached out to friends and acquaintances for assistance. Within the first year of his injury, Logan’s friend John Holloway (c. 1666–1734) in Virginia, a lawyer who had served as the first mayor of Williamsburg, sent Logan a “large a quantity of that valuable plaister.” Spelled plaster today, these substances were typically some mix of curatives spread on a piece of cloth affixed to the skin, meant to sooth and heal wounds. The relief did not last, and Logan’s hopes for a full recovery faded.

Pennsylvania Legacies Fall 2017

By 1729, Logan noted in a letter to John Penn that the possibility of being able to fix his leg was as likely as being able to “restore an amputated limb.” As Logan put it to several correspondents, he was “perfectly a Cripple.” As a “cripple”—according to Samuel Johnson’s 18th-century dictionary, someone who “has lost or never enjoyed the use of his limbs”—Logan worked with what he had. Managing disability involved medical intervention, but it also required manipulating objects and spaces. In the immediate aftermath of his disabling injury, Logan reconfigured his home, possibly the house that became known as the Slate Roof House, for which there is a monument on Philadelphia’s Second Street. The winter accident had “disabled” him, he explained to John Penn on April 9, 1728, and he “was obliged to have a bed set up in [his] Parlour.” For 16 days, he rested flat on his back while he nursed the broken or dislocated hip. In the first days following the injury, Logan’s servants moved him “w[i]th towels laid under [his] back,” as he explained to his brother in an April 1728 letter. Like today, caring for injuries compelled early Americans to manipulate and redesign bedsteads—objects used by people with disabilities and nondisabled individuals alike—in the hopes of making it easier to assist individuals with limited mobility in and out of bed and to change linens and chamber pots. Within two years of his accident, Logan moved to his newly built home, Stenton, in Germantown. Under the auspices of the National Society of the Colonial Dames of America in the Commonwealth of Pennsylvania since the early 20th century, it is now a house museum. At Stenton, visitors get a sense of the activity that surely buzzed around the slow-moving Logan. He lived there until his death in 1751, improvising with the assistance of family, friends, servants, and slaves.

When wealthy early Americans with disabilities who had some money to spare wanted to go out and about, they sought conveyances that would make their travels as comfortable as possible.

As he had done in his Philadelphia home, Logan situated his bedroom or “lodging room” on the first floor. As Stenton curator Laura Keim has noted, this arrangement was uncommon for the period and for this type of home. If and when Logan wanted to move about, he used crutches to get around the house. Today, we often think of crutches as therapeutic devices that enable mobility—as tools that help get us from one place to another. Logan had a different take on what crutches did for him, referring time and again to being “confined to crutches,” or having to use something that limited rather than facilitated his mobility. Early Americans dealing with disability or infirmity—and wealthy enough to afford nice things—used furniture items that kept them upright. Easy chairs (large, upholstered armchairs), for instance, helped them maintain a semblance of gentility. James Logan used an easy chair, located in his parlor at the time of his death, that may have been equipped with casters (small wheels), which would have allowed greater ease in moving across the floor and from room to room. As curator Keim has noted, using an easy chair inside a parlor would have been unusual, as that type of seating furniture was typically found in more private spaces. Through the early 19th century, other Americans with more limited means padded out less comfortable side chairs and armchairs with homemade upholstery and stuffing. Not everyone had the resources to purchase their own easy chairs or other types of expensive furniture that facilitated living at home with a disability. Some early Americans borrowed furniture. The diaries of Philadelphian Elizabeth Drinker (1735–1807) record that she and her family lent their bed chair over 20 times between 1777 and 1804, a gesture that might have created new relationships or strengthened existing ones within her familial and communal networks. Bed chairs served invalids of all ages, regardless of ailment. Bed chairs resembled the upper portions of easy chairs and allowed invalids to sit upright in warmth and comfort while spending extended periods of time in

bed. Bed chairs look similar to today’s upholstered “husband” pillows but without the wooden frame. When wealthy early Americans with disabilities who had some money to spare wanted to go out and about, they sought conveyances that would make their travels as comfortable as possible. The few times Logan left Stenton, it was not without difficulty. In a letter Logan wrote to John Penn shortly after his injury, he explained, “I goe neither to Meeting nor Council nor have I been out these 16 months past but except for ye Indian Treaty & once to see a sick person both times, in a borrowed Coach . . . into & out of w[hi]ch I get with great Trouble.” By the mid-1740s, he ventured to Philadelphia— just six miles away—on only a handful of occasions each year. On at least one occasion, he borrowed what he described as an “easie chaise,” as he noted in a 1736 letter to Peter Collinson. In Britain and Pennsylvania, other wealthy individuals with disabilities commissioned or borrowed specially designed carriages to accommodate physical disability and infirmity. Other incidents compounded Logan’s disability caused by his 1728 fall and increased the burden of care among his family and servants. A series of strokes (three or four, beginning in 1739) further weakened Logan’s aging body, his speech, and his mobility, showing how impairments interacted and impacted individuals in complex ways. For example, Logan’s strokes slowed his letter writing, at least temporarily. Strokes also affected his speech. When Logan died, Phebe Dickinson, the Logans’ housekeeper, testified that “after [Logan’s] Last fit of the Palsy his speech was so affected That he cou’d not Pronounce long Sentences Intelligibly but that he understood what was said to him and at times by Short Expressions & Signs cou’d make himself understood by others.” As with his broken hip, Logan consulted with several individuals about how to get better. For example, his wife sent away (without his knowledge) for a medicine. Logan also may have used Benjamin Franklin’s electric “apparatus” or electrostatic machine.

Fall 2017 Pennsylvania Legacies

Letters from James Logan [To William Logan] Philad[elph]ia 8th of Apr 1728 . . . On [the] 16th of Jan[ua]ry, I was stepping backwards in my yard where turning about a little Gate Post, at w[hi]ch there was a Step, then fill’d up with Snow, w[hi]ch being thaw’d a little w[i]th some Rain, that had fal[le]n & frozen again, was very slippery. At that place, both my feet flew violently from under me, & I came down, as if I had fal[le]n out of [the] air, w[i]th my whole weight, on [the] upper part of my left Thigh, a little below [the] joynt, on [the] Edge of that step. I at first thought [the] bone, was broke or dislocated, but in a little time after I was raised found it was neither the one nor [the] other. With much pain I was carried in a Chair into my Parlour, where a Cett bed was brought down to lay me on, there & afterw[ar]d in a standing bed (for it was impracticable to carry me up stairs to a Chamber) I lay for about 16 dayes on my back, w[i]thout being able to move an Inch, for when necessity required to have my body a little raised from [the] bed, for what could not be avoided it was done, w[i]th towels laid under my back &c. It was about 7 weeks, before I could raise it from [the] floor, sufficiently to use Crutches, but now by their help I walk about a little yet have no manner of use of it, nor doe I recover much strength, in [the] part affected, w[hi]ch seems to me to be but one muscle . . . for the chief defect is, that I can neither raise [the] Limb, nor stand on that foot. Whether ever it may be of such use to me again, considering my years, is uncertain, I fear however, that I shall never be quite sound. . . . The Change of Colour it was thought was prevented by [the] application of Camphorated spirit of Wine, & hott fomentations continued. It swell’d much however, but [the] tumour being very speedily brought down, about a week after in less than 24 hours by an excellent Plaister, my whole thigh afterw[ar]ds fell away so much in flesh, that it appear’d little more than skin & bone, yet as [the] pain left me, it recovered again, w[i]th [the] rest of my body, w[hi]ch was also much reduced, tho not proportionably to that Limb, & now I am in my usual plight, & almost free from pain, thô perfectly a Cripple. . . . To [ John] Penn Philad[elph]ia 18th Oct[o]b[e]r 1728 Honoured Friend . . . [T]hô it was 9 months yesterday since I rec[ei]v[e]d [the] blow, my Limb is at least as weak and useless to me, as it was when I first mentioned [the] Disaster to thee[.] It is really astonishing to all those of skill here who view it, being so loose in [the] Joynt, that it can be moved backw[ar]d and forward by [the] hand as if [the] bone had no other ligature than [the] loose flesh about it, w[hi]ch is much thinner than that of my other [tendons] and yet I am now almost free from pain, but can by no means stand on it nor walk one step w[i]thout Crutches. Such an accident as far as I can learn, has scarce ever been known, and it seems as if purposeful[l]y sent to disable me from all action, and to lay me under a necessity of betaking my self to that Retirem[en]t I have so long proposed. . . .

Pennsylvania Legacies Fall 2017

Letter from James Logan to his brother, William, Apr. 8, 1728, describing James’s disabling injury and subsequent care. James Logan Letterbook, Volume III, Logan Family Papers.

[To] Thomas Penn Philad[elph]ia 25th Octo[ber]: 1728 Esteemed Friend . . . As to my own present state tis very Melancholy by being disabled from moving one step from my seat without a pair of Crutches and I am so far from any prospect of Recovery that the distressed part is now at last at least as weak as it was about 7 months since[.] I am therefore now hasting with all the Dispatch that can be made to putt my former Resolution (when I thought not of Returning to England) in practice Viz. to retire with my family into the Countrey, where I have for some time been building a handsome house. . . . [M]y Confinement and uneasiness in sitting much sinks my spirits tho otherwise I have a Constant share of health. . . . [ John] & [Richard] Penn Philad[elph]ia 24th Aug[u]st 1730 Hon[ore]d Sirs . . . I receiv[e]d a Chariot intended by you as a present for which I heartily thank you. As I have no ambitions but to live quiet, I had resolved never to use any thing of that kind above a two wheel’d Chaise, one of wh[i]ch my wife has had these dozen years to carry out w[ith] Children w[i]th her to our Plantation, & this I have sometimes used since my misfortune, but as I cannot gett in or out of it over [the] Shafts w[i]th out laying [that] on [the] ground w[i]th the horse out, I shall now much contrary to my Intention be obliged to make use of your favour, thô I cannot be easie to accept of it on [the] terms you have so kindly sent it. . . . James Logan Letterbook, Volume III, Logan Family Papers.

This bed chair, which is currently in pieces, had an adjustable back and armrests. Bed chairs like this one would have been particularly useful to someone who had to spend weeks or months in bed as a result of illness or injury. Courtesy, Winterthur Museum, Bed Chair, 1790–1830, Philadelphia, PA, Swietenia, Linen, Horsehair, Tulip poplar, Gift of Gail S. Hendrix, 1994.124.; (BELOW) (LEFT) Electrical stimulation being applied to a girl’s arm. Illustration in An Essay on Electricity, Explaining the Theory and Practice of that Useful Science, by George Adams, 4th ed. (London, 1792). Courtesy of The Library Company of Philadelphia

As psychologist and neuroscientist Stanley Finger explains, 18th-century experiments in electrotherapy were motivated by the hypothesis that electrifying the body—a tactic employed by the ancient Romans using shocks from ray fish—would restore voluntary movement to individuals suffering from palsy or paralysis. Franklin tried the machine out on several people, elite and poor alike. Finger concludes that electric shocks seemed to have no long-term effect on Logan’s (or others’) condition— assuming Logan did, in fact, use the machine at all. Electrotherapy is still used today to help people recovering from certain injuries or dealing with paralysis and other neuromuscular disorders. Many of us today assume that early American individuals with disabilities remained socially isolated at home, with little or no ability to be part of the world. Yet my research suggests the opposite. Logan, for instance, remained connected with friends and family through letter writing and books. Were it not for Logan’s disabilities, he might not have produced the most tangible product of his legacy: his annotated library that became the basis of the Library Company of Philadelphia. As historian Anthony Grafton points out, it was during the last years of his life that Logan made the most progress in annotating the margins of his ever-growing library that, upon his death, totaled 2,681 volumes. People with disabilities of all social and economic statuses were a visible, integrated part of everyday life on the street and in private space in early America. One need take only the briefest of looks at 18th-century newspaper runaway advertisements to learn about working-class Pennsylvanians with physical disabilities fleeing masters and contracts quite successfully, sometimes with a crutch under one arm. For example, on April 20, 1749, the Philadelphia Gazette notified readers that “two convict servant men” ran away from Baltimore County’s Nottingham iron works. According to the advertisement, one of the men, Richard Prestwood, “has had one of his legs broke, which occasions him to go with two crutches.” Perhaps he broke his leg while he worked at Nottingham. Regardless of the circumstances of his injury, for Prestwood—in contrast to Logan—crutches did not seem to slow him down.

Work performed by servants, slaves, friends, or family made the continuation of life and the creation of comfort at home possible for wealthy people with disabilities such as Logan. Without these resources, Logan may not have lived as long as he did. But, as the example of Richard Prestwood reminds us, thousands of early Americans of low and middling status also lived with mobility impairments and other disabilities. Both Logan and Prestwood lived in a world that included many other disabled people. Regardless of these individuals’ resources, they all lived with, managed, and made meaning from the things they used to get around—or stay in one place. Nicole Belolan is program coordinator and fellow-in-residence at the Consortium for the History of Science, Technology, and Medicine in Philadelphia. She is working on a book manuscript and exhibition based on her dissertation about the material culture of disability in early America. She would like to thank several people and institutions who have supported this research, including Laura Keim, Philippe Halbert, and the staff at Stenton; Kasey Grier and the Department of History at the University of Delaware; Jennifer Van Horn and the McNeil Center’s 2014 conference on James Logan, where this research was first presented; and the staff at the Historical Society of Pennsylvania.

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“Detect early; Protect always”:

by Dennis B. Downey

Pennsylvania Legacies Fall 2017

PHILADELPHIA PHYSICIANS AND THE GOSPEL OF EUGENICS

t the dawn of the 20th century, Philadelphia and much of America was awash in what has been labeled an “age of reform.” Emboldened by confidence in social engineering and government regulation, many of the city’s and nation’s best minds were convinced that the problems of modern life could be eliminated through aggressive municipal intervention. Impure foods and drugs; communicable diseases such as influenza, mumps, and measles; child welfare and infant mortality; vice; crime; and pauperism were but a few issues that vexed municipal administrators concerned with public health and hygiene. Increasingly they looked to the city’s colleges and medical schools for assistance. “State Institution for Feeble-Minded of Western Pennsylvania,” illustration in Sixth Annual Report of the State Institution for Feeble-Minded of Western Pennsylvania, Polk, Venango County, for the Year Ending September 30, 1902 (Oil City, PA, 1903). Fall 2017 Pennsylvania Legacies

By the eve of the First World War, Philadelphia physicians such as Joseph S. Neff, Charles H. Frazier, Walter Cornell, and Samuel Dixon were at the forefront of the American public health movement. Their zeal for social reform complemented the growing professionalism of modern medical science as an agent for human progress. The city’s Department of Public Health and Charities played a crucial role in defining a local and statewide agenda of public health and sanitary improvements. Medical experts at the University of Pennsylvania and Jefferson Medical College joined their counterparts at the College of Physicians of Philadelphia and such institutions as the American Philosophical Society in the public crusade to rid Philadelphia and the commonwealth of innumerable obstacles to social purity. Philadelphia also emerged as a crucible for eugenics, a social and scientific movement that had a lasting effect on medical and biological science as well as on popular culture. Eugenic thought, which had a foothold in Pennsylvania as early as the 1870s, provided justification for selective human reproduction to assure the “best stock.” Francis Galton, a British polymath and cousin to Charles Darwin, was its chief prophet, concluding that heredity was the basis for human variation. If human genius was in large measure hereditary and passed down from generation to generation, Galton and his followers asked, was the same not true of its opposite? By the 1920s, eugenics-inspired family studies, Beautiful Baby contests, and Fitter Family expositions were the rage at county fairs and seaside resorts. Newspaper cartoons, novels such as Tarzan of the Apes (1912) and films such as The Black Stork (1917) extolled a social creed premised on the so-called “science of well birth” in an age enamored of the proverbial “struggle for existence.” Eugenics, declared Woods Hutchins, MD, to a Philadelphia audience, “is a religion of the future” devoted to “the sacredness of the race stream.” American disciples included Charles Davenport, Harry H. Laughlin, Alexander Graham Bell, Margaret Sanger, E. G. Conklin, and Henry H. Goddard, who taught for a time at West Chester before relocating to the Training School at Vineland, New Jersey. The Eugenics Record Office, the American Eugenics Society, and a short-lived Eugenics Party promoted a national agenda of racial hygiene research, immigration restriction, and selective human reproduction. Industrialists such as John D. Rockefeller, Andrew Carnegie, the Harrimans, and the Vanderbilts were drawn to its precepts. Even US Presidents Theodore Roosevelt and Woodrow Wilson were not immune to the pull of eugenics. Some of the most influential apostles of eugenics reform, however, were physiciansuperintendents of state institutions and hospitals for the “incurably insane” and “feebleminded.” A seemingly benign fascination with ancestry, human variation, and heredity had its more ominous side. In an imagined contest between civilization and savagery, eugenicists reinforced stereotypes and harsh social prejudices toward racial and ethnic groups—as well as people with physical and intellectual disabilities. The “fit” were encouraged to have large families while the “unfit” were discouraged or even prevented from producing offspring. Medical

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Card detailing the aims of the Public Charities Association of Pennsylvania, including “the segregation of all feebleminded by 1918,” circa 1908.

experts routinely led the campaign for legal sanctions against reproduction by individuals with cognitive disabilities, whom they labeled mentally and morally “defective”; “idiot,” “imbecile,” and “moron” became the commonplace classifications that appeared in medical texts and state statutes. The stigma associated with these terms became fixed in public attitudes. “Feeblemindedness” was the catchall phrase that summed up not just a personal misfortune but a mounting social problem. An association of mental disability with criminality and sexual perversion persuaded Maj. Leonard Darwin, Charles’s son and head of the British Eugenics Society, to insist, “The first duty of medicine is not to cure disease, but to prevent it.” As Justice Oliver Wendell Holmes famously declared in 1927, “Three generations of imbeciles are enough.” In 1908, the same year a British Royal Commission released a highly critical report on the social contagion of rampant feeblemindedness, the Public Charities Association of Pennsylvania published a provocative pamphlet entitled The Menace of the Feebleminded in Pennsylvania. “I believe,” wrote physician-reformer Charles Harrison Frazier, dean of the University of Pennsylvania Medical School, “that the most important problem we have before

“Detect early; Protect always” became the catchphrase for a transformation in disability policy that held sway over political decision making for much of the 20th century. us is the prevention of mental defect.” He echoed the opinions of Isaac N. Kerlin and Martin Barr, two Penn-trained physicians who supervised the Pennsylvania Training School at Elwyn, and many other practitioners. Whereas Kerlin had referred to Elwyn’s children as “pets,” Barr termed the feebleminded a “grotesque travesty of humanity.” “Idiocy is not a disease,” Barr argued, “it is a defect” passed from generation to generation. Charles Frazier concurred: “It is definitely inherited, according to the best scientific thought of the day.” Frazier estimated, based on unreferenced sources, that 18,000 individuals of “tainted stock” roamed Philadelphia streets, 40 percent of whom were young girls nearing puberty. If that were not enough, Joseph Neff, the Philadelphia Director of Public Health who was on the staff of Jefferson Medical College, asserted that “Feeble-minded women produce many children,” and warned “most of the children of feeble-minded women are either illegitimate or feeble-minded or both.” In 1917, with the First World War raging across Europe, Frazier addressed his Penn colleagues regarding the exponential rise of feeblemindedness and its increasing social and economic burdens. “The abnormal fecundity of the feeble-minded and mental defective,” he declared, “has been proven over and over again in statistical studies in every country here and abroad,” although the studies were of questionable methodology and dubious at best. “What is to be done with the feeble-minded and epileptic? How shall we deal with them?” asked Frazier. How should the city relieve itself of the burden of wayward mental and social “degenerates” incapable of self-improvement? Eugenics reform seemed to offer an obvious but disturbing solution to the crisis at hand—in Philadelphia and around the country. “Detect early; Protect always” became the catchphrase for a transformation in disability policy that held sway over political decision making for much of the 20th century. Across Pennsylvania and the United States, an activist campaign to rid society of hereditary mental defect sought state measures that went beyond eliminating disabilities—Pennsylvania physicians and their political allies sought the elimination of people with disabilities themselves, a practice Nazi Germany would replicate in the 1930s based on American examples.

This eugenics mindset had practical social implications for people with disabilities in the form of legislative proposals that promoted preventing them from marrying, criminalizing their sexual relations, and subjecting them to custodial institutionalization and even involuntary sexual sterilization. The most politically controversial measure called for the compulsory sexual sterilization of any adolescent or adult assessed by a physician to suffer from hereditary feeblemindedness. Pennsylvania’s was the first legislature to entertain the proposition (in 1889), although Indiana was the first state to enact such legislation (in 1907). In 1892, Isaac Kerlin reported to his colleagues that more than 270 surgical sterilizations had been performed at the privately owned but state-supported Training School at Elwyn. The “free use of the pruning knife . . . it is a war of extermination,” Kerlin’s protégé Martin Barr explained three years later. Jefferson College of Medicine surgeon J. E. Mears, a frequent visitor to Elwyn, argued that “asexualization” was not “punitive . . . but remedial and curative”—a solution to what he called “the Problem of Race Betterment.” Mears thought the best time for sterilization was before adolescents reached the age of puberty, when unwelcome habits formed. Over three decades beginning in 1889, state legislators considered a half-dozen bills empowering the Commonwealth to allow surgical intervention to prevent feebleminded and epileptic citizens from reproducing. Twice the measure passed both houses, only to be vetoed by the governor. “To permit such an operation,” Gov. Samuel Pennypacker declared in his 1905 veto message, “would be to inflict cruelty upon a helpless class in the community, which the State has undertaken to protect.” Pennypacker had few qualms about institutionalization, however. Even as he lamented the 1911 defeat of a bill “to prevent the procreation of idiots, imbeciles, and feeble-minded persons by the process of sterilization,” Director of Public Health Joseph Neff counseled vigilance and public education about the soundness of the measure. To that end, Philadelphia’s Department of Public Health hosted a National Conference and Exhibit on Mental Hygiene in March 1913 that coincided with new legislation to promote “sterilization as prevention.” More than a dozen experts stressed the beneficial relationship between eugenics and mental fitness and the need for

Portrait of Governor Samuel Pennypacker, undated. Simon Gratz Collection.

Fall 2017 Pennsylvania Legacies

“Day Room—Cottage E,” photo in Sixth Annual Report of the State Institution for Feeble-Minded of Western Pennsylvania, Polk, Venango County, for the Year Ending September 30, 1902 (Oil City, PA, 1903).

states to do more “to prevent the reproduction of those who are born with congenital defect, which results in lower grades of imbecility, in feeblemindedness . . . and feeble grades of criminality,” among other vices. In 1921, Philadelphia Senator G. Stanley Woodward, MD, reintroduced a compulsory sterilization bill. A companion bill would have denied “the marriage of the unfit, which is necessary to prevent the deterioration of future generations.” Neither bill was enacted into law. Faced with the lack of public support for eugenics sterilization, public health officials redoubled their efforts to expand stateoperated institutions for the children and adults with mental disabilities. Addressing a 1911 Philadelphia symposium, W. W. Hawke, superintendent of the State Hospital in Warren, summed up the view of many: “All feeble-minded (referring to those mentally deficient from birth or early infancy) should be placed in an institution for life.” Neff, Frazier, and their colleagues agreed. Based on Dr. Walter Cornell’s school investigations, the Philadelphia Department of Public Health estimated in 1911 that at least 11,000 “mentally defective” children lived in the city and were incapable of benefitting from public education. Perpetual segregation would alleviate a social and economic burden, they thought, and negate “association” between the sexes, thus preventing reproduction. Institutionalization was another means of ridding society and the gene pool of what Charles Davenport termed “defective protoplasm”—a gentler form of extermination, perhaps, with the burgeoning population simply withering away over time. In addition to providing a subsidy to Elwyn, the Commonwealth of Pennsylvania engaged in a century-long legislative effort to directly fund the construction and operation of massive facilities to isolate both men and women with intellectual and developmental

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disabilities. Sprawling custodial institutions well off the beaten path opened in rural Venango County (The State Institution for Feeble Minded of Western Pennsylvania, or Polk State School) in 1897 and northern Chester County (Eastern Pennsylvania State Institution for the Feeble Minded and Epileptic, or Pennhurst State School and Hospital) in 1908. Each had been licensed initially to house 500 “feebleminded and epileptic” residents, but by the 1920s more than 1,000 congregant male and female “inmates” (as the institution put it) were committed for life. At their peak in the early 1960s, Polk and Pennhurst each had resident populations that approached 4,000 people. Over the course of the 20th century, each institution housed more than 10,500 residents. Citizens committed to these institutions lost their liberty, including the freedom to leave. They also lost the right of consent to medical treatments, sometimes with horrifying consequences. Those who could train for manual and domestic labor were assigned to work details. The routines of the wood shop, laundry, kitchen, dairy farm, crop fields, animal husbandry, and cleaning filled the hours of the day. As the population increased and staffing lagged behind, some of the more able residents were assigned to help care for the greater number of “custodial” residents who were judged incapable of self-care. Inmate-workers were not compensated for their labor, a condition the Supreme Court would eventually conclude (in Souder v. Brennan, 1973) amounted to institutional peonage, or slavery by another name. By carefully controlling costs, however, Pennhurst and other institutions were able to report annual surpluses to the state. Eugenics had been a driving force in the creation of state institutions in Pennsylvania, across the United States, and even internationally. Although the ideology’s credibility waned in

Lithograph portraits of an â&#x20AC;&#x153;idiotic boyâ&#x20AC;? after 6 months (top right), 12 months (top left), and 3 years (bottom) at the Elwyn Institute, in Appeal of the Board of Directors on Behalf of the Pennsylvania Training School for Idiotic and Feeble-Minded Children, with the First Annual Reports of the Treasurer and Principal (Philadelphia, 1854).

Fall 2017 Pennsylvania Legacies

The Menace of the Feeble-Minded in Pennsylvania FEEBLENESS of mind, imbecility, idiocy, constitutional inferiority and amentia are terms used to indicate a notable and permanent deficiency of intelligence characterizing certain individuals. It is a state of mental defect from birth, or from an early age, due to incomplete cerebral development, in consequence of which the person affected is unable to perform his duties as a member of society in the position of life to which he was born. It is definitely inherited, according to the best scientific thought of our day. . . . Most of those who are competent to judge from practical experience with members of the defective classes feel that little can be done to restore them to a useful, independent life, and both the practical worker and the scientific student agree that something drastic must be done to save the race from the burden and the taint of these unfortunates. THOUSANDS IN PENNSYLVANIA To-day there are in Pennsylvania a large number of the epileptic and feeble-minded—it is almost impossible to tell just how many. A committee of the Pennsylvania Conference of Charities and Corrections a year or two ago estimated that there were at large in the community, in all probability, one mental defective to every 350 persons, or one in 400 as a conservative estimate, and one epileptic in 2000 persons. As the report states, “This means more than 18,000 in the state of Pennsylvania, 7000 at least of whom are girls and women of the childbearing age, who are not receiving institutional care of the right kind.” . . . What is to be done with the feeble-minded and epileptic? How shall we deal with them? What are we doing to solve the problem and to stamp out the appalling growth of mental defectiveness in our communities? . . . . . . Through various philanthropic organizations the community is partially supporting a large number of the feeble-minded who are not in institutions. The Public Charities Association of Pennsylvania, of which I am chairman of the executive committee, has begun to investigate the records of certain families well known to the charitable societies of Philadelphia. The officers of the Association felt that the rough estimates on the cost of degeneracy or defectiveness were either largely exaggerated or, if true, were so startling that some steps should be taken to lighten the burden upon society that must come from increased taxation. A CONTINUING EXPENSE . . . It has become evident that the schools are not the “cure-all” and never will be, and that the feeble-minded child is one that cannot be handled by our present school system. To intrust him to the care of the school is to leave a dangerous incompetent at liberty and to burden the future with equally helpless and harmful offspring. Social workers and doctors believe in the value of environment,

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but for the sake of the many we can help, let us not leave dangerous incompetents at liberty to drag down others to their own degradation. The drunkard, the prostitute, the criminal, are as potent for evil as the proverbial ill weeds that grow apace. From our statistics we know that the feeble-minded multiply at least twice as fast as the general population. Pennsylvania is as yet not awake to the problem, or is just beginning to realize that feeble-mindedness is analogous to cancer and can only be cured by resort to radical procedures. . . . . . . [Elwyn] was founded under the old theory that feebleminded children need only to be properly trained and to be properly nourished to become efficient and self-supporting citizens . . . . Since that time Pennsylvania has founded two state training schools—one at Polk, with a capacity of some 1600, and one at Spring City, not as yet completed, which has a capacity of about 500. The emphasis of these institutions has been laid on the training of children; the notion of custodial care of adults—the breaking of the endless reproduction chain—plays no part in the organization of these institutions and practically none in their curriculum. . . . The state is still working along the old theory of “training” and has not yet adopted the more modern policy of “prevention.” . . . TWO SOLUTIONS OF PROBLEM . . . There are two ways of dealing with this problem, sterilization and segregation. When we approach the question of sterilization we tread on dangerous ground. . . . The community as a whole is not yet ready to accept sterilization as a solution of this problem, nor are physicians agreed as to the advisability of this measure. . . . There remains, as the only alternate solution of the problem, segregation. LEGISLATURE URGED TO ACT . . . On state lands of no great value, far from dangerous contact with communities or easy transportation, the feeble-minded can engage in all kinds of useful occupations—farming, reforestation and manual industries, and about all can render themselves selfsupporting, useful and content. This is entirely possible if the state will but do its duty. . . . When our Commission reports that of the 17,000 feeble-minded in Pennsylvania only 2263 are in proper institutions and that there are some 2600 in other institutions, such as insane asylums, almshouses, penitentiaries and jails, we realize how desperate is the situation and how important it is that at this session of the legislature a beginning should be made, no matter how small, to provide for segregation and thereby to check at once the natural or unnatural increase of these, the state’s charges. Charles H. Frazier, The Menace of the Feeble-Minded in Pennsylvania (Philadelphia, 1908), excerpt Portrait of Charles H. Frazier, from The Menace of the FeebleMinded in Pennsylvania (Philadelphia, 1908).

“What Is Needed” to deal with Pennsylvania’s “feeble-minded” population, according to Philadelphiaarea reformers: segregation, institutions, and legal reforms. From The Transmission of Feeble Mind, by Department of Public Health and Charities of Philadelphia (1910); (RIGHT) Family history chart in The Transmission of Feeble Mind, by Department of Public Health and Charities of Philadelphia (1910). (LEFT)

the post–World War II era as Nazi atrocities shocked the world out of its complacency, vestiges of eugenics survived in medical research, scientific inquiry into genetic testing and the Human Genome Project, and in popular stereotyping. With good reason, scholars today speak of the “new eugenics” and the fragile ethical boundaries between some modern scientific investigation and human vulnerability. In the postwar decades, pervasive patterns of abuse, neglect, and mistreatment endemic to in life at Pennhurst, Polk, and other such institutions came to light, creating a national groundswell of parental and organizational advocacy to counteract conditions within state-run facilities. Another source of controversy that mobilized advocates was the commonplace practice of pharmaceutical companies, university research scientists, and even the federal government using institutions for people with mental disabilities as research laboratories to test vaccines and other drugs. From the 1930s to the 1970s University of Pennsylvania physicians and medical researchers such as Joseph Stokes, Werner Henle, and Robert Weibel made regular visits to Pennhurst, the Hamburg Center, and other institutions with the full and willing cooperation of their medical directors. They sought test subjects for vaccines against influenza, measles, mumps, hepatitis, and other diseases. Jonas Salk’s pursuit of a stable polio vaccine took him to Polk and other sites in western Pennsylvania.

One might ask, why did Pennhurst, Polk, and other Pennsylvania institutions become what special education expert Burton Blatt called a “purgatory”? Was it their sheer size, their isolation from the social mainstream? Was it something in the very nature of large-scale institutionalization and mass incarceration? Or, perhaps, was it the pervasive and lingering effects of an ideology that had brought them into existence in the first place? Eugenics provided a rationale for viewing some fellow citizens as “unfit” and “degenerate” and thus unworthy of equal protection and decent treatment—an “inconvenient people,” as British author Sarah Wise describes the victims. At the dawn of the American Century, Philadelphia’s medical elite and their political allies forged an alliance to address an imagined crisis in public health created by the very presence of the most vulnerable citizens in the community. They found in eugenics a final solution that with all of its tragic implications serves as a sobering reminder that “history is something that happens to people.” Dennis B. Downey is professor of history and until recently director of the University Honors College at Millersville University. A past president of the Pennsylvania Historical Association, Downey has received several awards for his writing and advocacy work. He will retire from Millersville in December 2017.

Fall 2017 Pennsylvania Legacies

Pennsylvania Legacies Fall 2017

MILDRED SCOTT: A Pennsylvania Woman at the Heart of the Early Disability Rights Movement by Audra Jennings

mericans most often associate the disability rights movement with the drive for the Americans with Disabilities Act of 1990, protests to ensure that the federal government enforced provisions in the Rehabilitation Act of 1973 banning disability discrimination in federally funded programs, the fight for accessible transportation in the 1970s and 1980s, or the deinstitutionalization movement. Disability rights activism in the United States, however, has deeper roots. During the 1940s and 1950s, the American Federation of the Physically Handicapped (AFPH) sought to change federal law to make the New Deal’s promise of security, opportunity, and work accessible to disabled people. In this 1961 poster featuring a workman who uses crutches, the words “Handicapped Disabled Worker” have been crossed out and replaced with “Able Worker.” Artwork by Milton Caniff for the President’s Committee on Employment of the Physically Handicapped. Division of Medicine & Science, National Museum of American History, Smithsonian Institution. Fall 2017 Pennsylvania Legacies

(LEFT) Detail

from front cover of Valor, June 1950, featuring photo of AFPH delegation at the steps of the US Capitol; (RIGHT) Front cover of Valor, Oct. 1952, celebrating National Employ the Physically Handicapped Week. Archives, City College of New York, CUNY.

(BELOW) “Employ

the Handicapped” stamp, 1960. Smithsonian Institution, National Postal Museum.

The AFPH inspired thousands of disabled Americans—civilians and veterans with diverse physical disabilities—to engage in the political process and demand full economic citizenship. Disability activism had, until that point, grown out of a local community or the shared experience of a particular disability or military service. As a national, cross-disability social movement organization, the AFPH pushed the disability rights movement onto the national scene and drew support from organized labor, including the American Federation of Labor, Congress of Industrial Organizations, United Mine Workers of America, International Association of Machinists, and other unions. Chartered in Washington, DC, in 1942 as a nonprofit, educational, and beneficent organization, the AFPH fought for federal services to facilitate disabled people’s employment. AFPH activists called for greater access to government employment, employment placement assistance, and legislation requiring employers to hire people with disabilities. The organization also advocated for a federal pension program for people with disabilities. At this point in history, the Social Security Act of 1935 provided aid to blind Americans who lived in poverty but offered no support to other disabled Americans. Leaders and members pushed for better access to health care and education, increased building access, improved safety and hygiene efforts, and federally funded research on various disabilities and potential treatments. These efforts grew out of the idea that the problems people with disabilities faced did not come fully from their individual bodies or personal difficulties but instead from a society that undervalued and excluded disabled people, all too

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often denying them dignity and respect along with opportunities for education, work, and personal fulfillment. In this context, AFPH members came to see discrimination as a shared experience that linked individuals with physical disabilities across the nation, regardless of the type of disability or when or how a person became disabled. AFPH activists pushed against that discrimination while also calling on the federal government to enact policies that would draw disabled people more fully into civic life. Moreover, the organization fought for disabled Americans to have a clear role in shaping and administering policies that would touch their lives. One disabled Pennsylvania woman worked at the center of this earlier chapter of the disability rights movement, pushing for greater access to opportunity for disabled citizens across the nation. Scott, who was disabled by polio in early childhood, grew up just outside of Pittsburgh, in Cecil, Pennsylvania. As one of seven children, she and her siblings often had to do a great deal for themselves, which fostered her independence. In a 1949 speech given at a Zonta Club meeting, Scott reflected that even as she was “left out of many things” as a child, she always found other activities and as a result rarely felt “different” or “looked upon as a ‘novelty.’” She first realized the extent and power of disability discrimination when she learned shortly before her high school graduation that she would be barred from teaching, the career path of the women she “knew and admired best.” Pennsylvania, like many other states, banned people with visible disabilities from teaching. No amount of hard work or talent would make her dreams a reality.

Mildred Scott (right) and Paul Strachan (center), from front cover of Valor, Sept. 1953. Archives, City College of New York, CUNY.

That deep disappointment and the search for a vocation that followed led Scott to conclude that disabled people needed a national organization to serve their interests and to push to change laws like the one that shut her out of her chosen profession. In the meantime, she found work as a stenographer with the US Bureau of Mines, eventually moving to Dallas, Texas. Early in 1943, Scott, then in her early thirties, happened across a pamphlet for the AFPH. Interest piqued, she wrote to the nascent organization for additional information. Having been taught by experience that disabled individuals could not expect opportunity, equal rights, or justice in the way that able-bodied people could, Scott saw potential in the organization, whose emblem promised “Justice,” “Opportunity,” “Unity,” and “Equal Rights.” Scott began to receive mailings from the AFPH, which by the following year boasted 45 lodges and an extensive at-large membership. Her interest in the AFPH’s work continued to grow. She would later describe the organization as “pioneering in a virtually unknown field.” Scott saved money to return to school and moved to Washington, DC. Now living in the same city as the AFPH’s headquarters, she began to invest more and more of her time and money in the AFPH, deciding to devote herself to the organization instead of returning to school. Her work also brought her into contact with AFPH’s founder and president, Paul Strachan. She told Zonta Club members that she “had never met anyone before who was so convinced and determined that there must be a real program for the Nation’s millions of handicapped, and, a militant organization to back it up.” The AFPH had grown out of Strachan’s personal experiences of being “broke and dependent” after an automobile accident and several prolonged illnesses. His extensive government and union connections from his work as an organizer and legislative representative for the American Federation of Labor made him

an effective advocate for his organization’s goals. Through the AFPH, he hoped to better the lot of disabled citizens. Over time, Scott’s determination and commitment matched Strachan’s. At the 1944 convention, members elected her national secretary. Soon she joined the executive staff in a paid position. Scott remembered the AFPH in its early days as full of “faith and hope,” working “for things that are right and just.” She described her own activism as working toward “a program which someday would bring about better conditions for the handicapped and the members of their families.” AFPH activists did not always control the conversation or fully shape the legislative responses to their demands, but they did spark a dialogue and left a lasting imprint on disability policy. The organization pushed the House of Representatives to establish a subcommittee to lead a two-year investigation on disability policy. The subcommittee, chaired by Representative Augustine B. Kelley (D-PA), collected thousands of pages of testimony about the conditions people with disabilities faced and the federal, state, and local programs designed to help them. From its earliest days, the AFPH fought to have national educational campaign designed to promote the employment of disabled workers. In 1945, Congress approved a National Employ the Physically Handicapped Week. In early May 1945 at House of Representative hearings on the bill, authored by the AFPH, Scott argued that “the vast majority” of the 25 million disabled Americans had “been subjected to the most unfair discriminations” in both industry and public employment— discrimination rooted in “ignorance and indifference.” Rejecting charity, she contended that disabled Americans “want[ed] and demand[ed] opportunity and equality before the law, and the bar of public opinion.” Changing public opinion was a vital step in securing employment gains, and employment, she maintained, would make disabled people “bulwarks and props of our democracy” Fall 2017 Pennsylvania Legacies

Women, Work, and Disability: Mildred Scott Addresses the Zonta Club of Washington, Oct. 5, 1949 It will, no doubt startle you to know that there are, according to estimates from various official sources, from 28,000,000 to 55,000,000 citizens of this country who are, in some degree, physically handicapped. At least half of them, estimated conservatively at 14,000,000, are women. . . . Women should concern themselves with this problem for many reasons. As homemakers, they are closer to disaster, when it strikes. Suppose children in the family suffer a handicap, then the mother has to see to it that the child receives special care. Perhaps some member of the family loses an arm, a leg, an eye—or suffers severe, chronic illness that strikes the victim down in adult life? We do not give much thought to such things until they happen, that is only natural. But would you, for example, if such happened in your family, know where to turn for guidance or help, if needed? The problems of the handicapped are economic in effect. You all know that the family’s savings can soon be eaten up by the cost of treatment, etc., and then when an individual has gotten over that phase, naturally the next thought is, how to become selfsupporting. Particularly it is true if the physical handicap has forced the individual to give up previous work because of its unsuitability in relation to his or her handicap, and instead, undertake vocational training for an entirely new job. When the individual determines to strike out on his own in that respect it is a healthy sign, because such determination, of itself, shows that the battle of rehabilitation is half won. But, unless opportunities and facilities to accomplish the desired end are available, and a better understanding of the capabilities of handicapped, as workers, developed on the part of employers, all too many handicapped find the doors of hope and achievement closed in their faces. Having been born and reared in a small town, and having had a severe physical handicap from early childhood, perhaps I see things differently from some others. . . . I came of a large family. Maybe, in a way, that was a blessing, because we had to scramble pretty much for ourselves. Yet I was left out of many things that other youngsters were doing, and, as an offset, I found there were many other things that I could do. Fortunately, I was not too much aware that I was “different,” or looked upon as a “novelty,” until 2 weeks before I graduated from high school. Then, it was brought forcefully to my attention. I had been encouraged and led to believe that I could be a teacher. That seemed to be the most popular profession for a woman, and naturally the women I knew and admired best were teachers. But I learned that even though I continued school and graduated from a teachers college I would be barred from teaching in the State of Pennsylvania, because of a visible physical handicap. That law still exists in the State of Pennsylvania, today. . . . I turned elsewhere to see what I might do. I am not going into a recitation of my personal history, except to say that my experience convinced me there should be a national service organization for

Pennsylvania Legacies Fall 2017

Mildred Scott (left), presents a charter to the officers of the Silver Spring Lodge No. 1953 of the AFPH. Photo in Valor, July 1956. Archives, City College of New York, CUNY.

physically handicapped. I also learned that if laws in this country were to be improved, or additional laws put on the books to bring about a better coordinated program for handicapped, that there must be a national organization fighting for those benefits. . . . It was only during and following World War I that women began to really organize. I believe that the National Business and Professional Women’s Club was founded during that period and that your own organization came into existence. You all well know the knotty problems you had in getting your organization well launched. We, in the AFPH, are encountering similar problems, and in many ways, even harder ones. . . . . . . I should like to make a suggestion: Those of you who are really interested in this matter could, for the next few days, pretend that you have suffered a sudden, severe disability. Then, figure out where you are going to get the service needed, where you will get necessary treatment, training, etc., if you chose a handicap that would prevent you from returning to your same job tomorrow. . . . It isn’t too much fun to look forward to taking a means test (a pauper’s oath) before you are eligible to receive financial health, or some of the services needed, otherwise. . . . [W]e invite you, and others, to join with us, in an effort to secure real justice to the handicapped. The fact is, there is no real national program for the handicapped, today, because the program varies, from State to State. . . . . . . Once I made a pledge that if the opportunity ever presented itself I would devote as much time as possible to work for a program which someday would bring about better conditions for the handicapped and the members of their families. I want to see mothers, wives, daughters, sisters, and others who have assumed family responsibilities have things a bit easier than my own mother had. . . . I hope each one of you will look about. If there is a job which you know of which can be filled by a qualified handicapped person, give that person a break. “Mildred Scott—A Well Deserved Tribute: Extension of Remarks of Hon. Augustine B. Kelley of Pennsylvania in the House of Representatives, Tuesday, Oct. 11, 1949,” excerpt, in 81st Cong. 1st Sess., Congressional Record 95, pt. 16 (Oct. 11, 1949): A6220–22.

“They can earn their future / Hire the Handicapped,” seal of the American Federation of the Physically Handicapped, circa 1953. Detail from back cover of Valor, Sept. 1953. Archives, City College of New York, CUNY.; (BOTTOM) Lawrence Killinger, a blind mechanic, repairing crutches and wheelchairs, circa Nov. 20, 1941. Philadelphia Record Photograph Morgue. (TOP)

instead of “dependents upon an uncertain charity.” AFPH members leveraged the National Employ the Physically Handicapped Week victory to gain a presidential committee on disability, the President’s Committee on National Employ the Physically Handicapped Week, in 1947. AFPH activists worked from within the committee to coordinate and focus federal attention on ensuring disabled Americans had opportunities to work. Again, while Congress did not adopt the AFPH’s proposals for reimagining the rehabilitation program and implementing a pension system, it did expand the national vocational rehabilitation program in 1943 and again in 1954 and extended public assistance to people with disabilities through the Aid to the Permanently and Totally Disabled program in 1950 and social insurance to include disability in 1956. In the longer arc of the disability rights movement, the AFPH’s hard-won presidential committee on disability—renamed the President’s Committee on Employment of People with Disabilities by the late 1980s—helped to foster employment opportunities for disabled Americans. During its first decade, the committee estimated that some 2.6 million disabled Americans found work. The committee shaped efforts to promote physical accessibility in the 1950s and 1960s and served as place where a younger generation of activists would meet and from which they launched a protest against educational, employment, housing, transportation, and architectural discrimination. These activists also pushed back against President Richard M. Nixon’s repeated veto of the bill that would become the Rehabilitation Act of 1973. Finally, in 1989, President George H. W. Bush appointed Justin W. Dart Jr. as chair of the committee. Dart, who had played a key role in developing and pushing for the Americans with Disabilities Act (ADA), used his role as chair of the President’s Committee to help make the ADA, which provided disabled people equal access to employment and public accommodations by requiring employer accommodations and public accessibility, a reality in 1990. Dart then met with business leaders around the country to push for compliance. In 1949, Representative Kelley paid tribute to Mildred Scott on the floor of the House. He told fellow members that there likely would never have been a National Employ the Physically Handicapped Week without the work of Scott, who had personally convinced the committee chair to report out the AFPH’s bill that would set in motion a building momentum for disability rights. He highlighted the consequence of her “tireless energy and courageous persistence” as she inspired organization among other disabled people, helped to guide legislation, and gave public talks to any group that would listen to her message about employing people with disabilities. Kelley declared that “her fervor” inspired others “to do their bit for the handicapped.” While financial and organizational difficulties would ultimately mean that the AFPH would not survive

into the 1960s, the organization’s efforts, and the work and “fervor” of one Pennsylvania woman, began decades of continued agitation for disabled people’s full inclusion. This process continues today as disabled Americans lead protests across the nation to ensure access to the government support that enables independent living. Audra Jennings is director of the Office of Scholar Development and associate professor in the Honors Academy at Western Kentucky University. She is the author of Out of the Horrors of War: Disability Politics in World War II America (University of Pennsylvania Press, 2016). Fall 2017 Pennsylvania Legacies

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THRESHOLD of LIBERATION: The Little-Known History of Deinstitutionalization of Americans with Developmental Disabilities in the Late 20th Century BY JAMES W. CONROY

ennsylvania played a key role in one of the most successful social revolutions of the 20th century, yet very few people, including historians, know anything about it. At the heart of this revolution is deinstitutionalization, a word that for most people connotes the closing of “mental institutions” (state-operated psychiatric hospitals). A national policy of discharging people from those facilities, without community supports for their mental health needs, was a betrayal of the first magnitude and had negative outcomes including imprisonment, homelessness, and consignment to nursing homes with nothing but custodial care. At the same time, however, there was another deinstitutionalization—one nearly unknown to the American public.

The deinstitutionalization of Americans with intellectual and developmental disabilities is a little-known piece of social history, and it is one with a largely happy ending. The outcomes of this other deinstitutionalization were as different as day from night from what happened in the mental health system, and many of its successes began here in the Commonwealth. Though the history contains both tragedy and triumph, it is a tale well worth telling to prevent repetition of greatly harmful policies and practices. Although large-scale congregate care settings (institutions) may have been designed with good intentions, they were soon found to develop into pernicious patterns. The original importer of the model from Germany, and America’s greatest expert in the disability field

in the 1800s, was Samuel Gridley Howe, director of the Perkins School for the Blind in Boston. Howe created a wing at the Perkins school for people with intellectual and developmental disabilities in 1848. Inspired by the “experimental classroom” he had seen on a visit to Boston, in 1852 Pennsylvania physician Alfred L. Elwyn founded a “demonstration campus” for this sort of large-scale institution in Germantown. Within a few years, the Pennsylvania Training School for Idiotic and Feeble-Minded Children (later known as Elwyn Institute, or Elwyn) had expanded and moved to a pastoral setting in what is now Elwyn, Pennsylvania. It became of the first and most influential among America’s institutional settings for people with intellectual and developmental disabilities.

Articles on the shocking conditions exposed at Pennhurst, Pennsylvania Message, Jan. 1969. Dennis E. Haggerty Papers, Temple University Libraries, SCRC, Philadelphia, PA. (BOTTOM LEFT) Children’s ward at Byberry, circa Dec. 24, 1934. Philadelphia Record Photograph Morgue.; (BOTTOM RIGHT) Overcrowded dormitory at Byberry, Apr. 7, 1944. Photo by J. Snyder. Philadelphia Record Photograph Morgue. (TOP LEFT)

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Less than two decades after he advocated the model of large residential settings, Samuel Gridley Howe had changed his tune, arguing in 1866: [It is] best . . . bringing up the child among ordinary children, and subjecting him to ordinary social and family influences. . . . People run counter to this principle . . . when they congregate the insane in hospitals, vicious children in reformatories, criminals in prisons, paupers in almshouses, orphans in asylums, blind children and mute children in boarding schools.” He cautioned that “all such institutions are unnatural, undesirable, and very liable to abuse.” Ignoring Howe’s dismal warning, American leaders and physicians, inspired by the rising eugenics movement, wholeheartedly adopted the notion of congregating and isolating citizens with intellectual and developmental disabilities. Public funding for the concept soon followed, and state-run institutions were created in most of the states of the union between 1850 and 1900. The Polk State School, originally named the State Institution for Feeble-Minded of Western Pennsylvania, became Pennsylvania’s first institution for people with intellectual and developmental

disabilities created entirely with public funding. Founded in Venango County, north of Pittsburgh, in 1897, it immediately received 153 children and adults from the already overcrowded Elwyn institution. The second such institution in the commonwealth, commonly called Pennhurst, opened in Spring City, Pennsylvania, in 1908 as the Eastern Pennsylvania State Institution for the FeebleMinded and Epileptic. Within five years of its opening, Pennhurst’s management began complaining to the legislature that the facility was overcrowded and understaffed. This refrain of inadequacy never stopped—and was never adequately addressed. From 1908 through the 1960s, Pennhurst remained a place of intense overcrowding and understaffing, with beds spaced one inch apart in huge barracks and 600 staffers spread over three shifts to care for 3,000 people by the late 1960s. In this regard, it was sadly similar the other 190-plus state institutions in the United States. For decades, print exposés attempted to reveal to the public the brutal and inhumane realities of state institutions. Conscientious objectors assigned to work in “mental hospitals” during World War

“Picking Peas” at Pennhurst, in in Report of the State Institution for Feeble Minded of Eastern Pennsylvania, 1921–1922 (Pennhurst, PA, 1922); (TOP RIGHT) “Laundry—Wash Room” at Pennhurst, in Report of the State Institution for Feeble Minded of Eastern Pennsylvania, 1921– 1922 (Pennhurst, PA, 1922); (BOTTOM RIGHT) “One of the Dining Rooms” at Pennhurst, in Report of the Eastern Pennsylvania State Institution for the Feeble Minded and Epileptic, 1915–1916 (Pennhurst, PA, 1916). Courtesy of Pennhurst Memorial & Preservation Alliance. (LEFT)

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The consent decree effectively “closed the front door” of Pennhurst, so children no longer needed to be sent there, but Pennhurst still had more than 2,000 people suffering within its walls. II, for example, revealed the horrific conditions they witnessed at the Philadelphia State Hospital, also known as Byberry. Although they provoked temporary outrage, none of these reports resulted in meaningful change. Then in 1968, Bill Baldini, a young television reporter in Philadelphia, met a group of Jaycees who had been volunteering at Pennhurst. Their leader, who also worked with the Philadelphia Association for Retarded Children, or PARC (now the Arc of Pennsylvania), told him there was a powerful story hidden at Pennhurst. Although skeptical of the details he heard, Baldini promised, “If even 10 percent of what you’re telling me is true, I’ll do a story.” He was sworn in as a Jaycee that morning and went to Pennhurst as a volunteer that afternoon. The next day he was back at Pennhurst in his role as reporter, this time with a film crew. Baldini’s team filmed people in conditions that shocked Philadelphia and the world: young people who had never left their cage-like cribs; open wounds crawling with flies; dozens of people in large “day rooms” with nothing to do; inmates largely unclothed; feces everywhere; and never-ending screaming. In these buildings, repetitive or self-harming behaviors and violence offered the only distractions from an utterly bleak existence. By bringing cameras into the institution and showing scenes that could not be denied in the nation’s living rooms for five successive nights, Bill Baldini’s series, Suffer the Little Children, became a singular and unprecedented catalyst for change. In light of Baldini’s exposé, PARC struggled to react. In a contentious meeting in 1969, the organization split into two factions. One group favored “fixing up” the institution; the other felt that such industrialized segregation was inevitably counterproductive and just plain wrong. The latter “closure” group prevailed, and the “fix-up” group resigned en masse. The prevailing PARC members retained a young attorney, Thomas K. Gilhool, whose first action was aimed at stemming the flow of children into Pennhurst and places like it. In those days, children with significant disabilities were not allowed in public schools, which is why they were sent to the Pennhursts of America. The case, PARC v. Pennsylvania, resulted in an unprecedented “Right to Education” consent agreement, settled in 1971, formalized in 1972, and soon upheld in appeals courts. This victory quickly led to a national wave of similar reform litigation, finally culminating in the 1975 national Education for All Handicapped Children Act. Nowadays, this same law is more widely known as IDEA, the Individuals with Disabilities Education Act.

The consent decree effectively “closed the front door” of Pennhurst, so children no longer needed to be sent there, but Pennhurst still had more than 2,000 people suffering within its walls. The mother of a young woman named Terri Lee Halderman, who had been horribly abused at Pennhurst, found an attorney who would begin another case with national ramifications. In 1974, David Ferleger filed a class-action lawsuit on behalf of Pennhurst’s current and former residents in federal court. The remedy the plaintiffs envisioned was originally to improve the institution, not close it. After PARC joined the suit, however, followed by the US Department of Justice, the plaintiffs’ approach changed. They argued that Pennhurst and places like it were no longer justifiable and must be closed and replaced with small, well-staffed, family-like homes in regular neighborhoods. The evidence presented in the case detailed not only the horrors of overcrowding and understaffing but also the harms suffered by the people at Pennhurst, who, on average, experienced significant loss of skills during the years they had been there. Experts from several countries showed the court that a better alternative to large-scale segregation had emerged—it was called “community services.” Halderman v. Pennhurst went on for weeks before Judge Raymond J. Broderick, a former lieutenant governor of Pennsylvania who had been one of the first to see Bill Baldini’s raw footage. In 1977, Broderick wrote his decision finding that the plaintiffs were right, and that the state defendants would have to negotiate a way to replace Pennhurst with community services. That negotiation failed. So on March 17, 1978, Broderick issued an order specifying what had to be done and appointing a special master—akin to the master in a bankruptcy proceeding—to oversee the process. A later suit that eventually made its way to the US Supreme Court was brought on behalf of Nicholas Romeo, a young man with intellectual disabilities from Philadelphia who suffered years of physical constraint and abuse after being admitted to Pennhurst following the death of his beloved father. The court’s 1982 verdict in Youngberg v. Romeo (Duane Youngberg was then the superintendent of Pennhurst) established a new standard in the humane treatment of people with disabilities. It held that people involuntarily committed to institutions were protected under the 14th Amendment from unreasonable restraint or unsafe conditions, and that courts must respect the “professional judgement” of qualified experts regarding such persons’ care and treatment.

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AROUSED PUBLIC CALLS FOR PENNHURST REFORMS; “DEFICIENCIES” IN OTHER INSTITUTIONS CITED PARC SPEARHEADS CHANGE Aroused citizens of Pennsylvania are calling for swift and decisive action to correct the existing deficiencies at the Pennhurst State School and Hospital in Chester County. The Pennsylvania Association for Retarded Children, supported by a wave of public protests, has substantiated its charges of intolerable living conditions, understaffing, overcrowding, failure to orientate staff, and program inadequacies. Cases of brutal beatings and homosexual assaults have been documented and submitted to the appropriate authorities. Newspapers, radio and television media, civic and religious organizations, parent groups, professionals, and government officials continue to call for reforms at the 60 year old institution. “PARC made many positive recommendations to the Office of Mental Retardation, the Department of Public Welfare and the Office of the Governor. These were either rebuffed or ignored, and led to the decision by the State Association to plead its concern before the public,” President Harold Nathan said.

PARC JOINED BY MANY PARC is not standing alone in this effort. The Pennsylvania Junior Chamber of Commerce called for a grand jury investigation of the institution in Chester County. Cases dealing with the denial of Constitutional rights are under study by the American Civil Liberties Union for possible court action. Some 338 Pennhurst staff, in a letter to the Governor, stated: “the institution was an antiquated physical plant geared to a turn of the century concept . . . matched by an equally outmoded community attitude that carried to the state legislature, impossible overcrowding, understaffing and fiscal and bureaucratic stumbling blocks.” The New York Times reported that “legislators, judges and investigators of various agencies have walked away appalled over the squalid overcrowded conditions and the plight of the patients, many of them classed as ‘human vegetables.’”

GLARING FAILURES Having recently failed to meet the most minimal standards set by the American Association of Mental Deficiency, Pennhurst stands among the 29 state owned facilities for the mentally disabled where a bi partisan legislative investigation, in June 1966, confirmed serious problems leading to the “dehumanization process” in the state’s system of care and treatment of the mentally retarded and mentally ill. More recently, documented exposes by the Philadelphia Inquirer and WCAU-TV brought renewed pleas from an appalled citizenry to effect change in the antiquated school and hospital, housing nearly 3000 children and adults, and serving a five county area. Pennhurst continues in flagrant violation of existing Department of Welfare regulations for residential mental retardation facilities. “If these regulations were enforced, Pennhurst would have to be closed,” confided a licensing official from the Department.

CALL FOR ADMINISTRATIVE CHANGE While one group of Pennhurst parents and staff defended the administrative role of Superintendent Dr. Leopold Potkonski, another group publicly endorsed the position of PARC, which made a recommendation, among several others, that Dr. Potkonski be asked to resign or be dismissed. To an extent, Dr. Potkonski conceded PARC allegations and pointed to the “patient-attendant ratio of 60 to 1 and the institution’s rural location as contributing factors.” The Association views the replacement of Dr. Potkonski by another administrator as a first step toward bringing about desired changes. This is in keeping with the proposed guidelines of the bipartisan committee which in 1966 recommended “consideration of nonmedical superintendents, agreeing that the operation of an institution is an administrative task which may be beyond the capabilities of doctors.” Also, this request for Dr. Potkonski’s replacement is in keeping with the Mental Health/Mental Retardation Act of 1966, which in addition places the responsibility for rectifying inadequacies upon the superintendent. In each case, the present superintendent’s assertion that State law requires the administrator to be a physician is proven erroneous. PARC also asserts that defences of Dr. Potkonski have been mostly personal and have not dealt objectively with the administrative weaknesses during the past decade.

ARC UNITS UNITE Following a State ARC mandate for change, officers and directors from Bucks, Chester, Delaware, Montgomery and Philadelphia Units united to combat the “mountains of apathy” surrounding the institution. Through their energies, supported by State ARC officers and staff, an unparalleled effort is being made to assure that changes does take place! This “Crusade for Change” has been spearheaded by Philadelphia Attorney Dennis Haggerty, Chairman of the PARC Residential Care Committee on Retardation. “Our only goal, and hope, is that through these efforts the good of the mentally retarded may be served…”

MORAL OBLIGATION Chairman Haggerty said: “Despite a recent flurry of superficial changes and expedient shifting of resident population, Pennhurst still exemplifies years of negligence under an ill-fated ‘medical care’ philosophy no longer acceptable or appropriate to the rapidly expanding opportunities and new horizons for the retarded.” Commenting about the present position of PARC, President Nathan said: “It is the moral obligation of this Association to speak with courage in behalf of the nearly 350,000 retarded citizens in our State; to relentlessly commit ourselves to the destiny of humanity and dignity for not just some—but all!” Pennsylvania Message, Jan. 1969

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Pennsylvania Message reports on the outcome of PARC v. Pennsylvania, June 1972. Dennis E. Haggerty Papers, Temple University Libraries, SCRC, Philadelphia, PA.

Pennhurst finally closed in 1987. In the meantime, the attorneys from PARC and the Public Interest Law Center of Philadelphia who had led to the victory obtained a federal grant to train attorneys in other states how to mount and win similar suits. More than 20 states filed such lawsuits between 1978 and 1987. One was in New Hampshire, which in 1991 became America’s first state to have no one in a public institution. This purposefully ignited brushfire of lawsuits across the land resulted in a steady and significant drop in institutional populations throughout the country. Because the 1978 decision of the judge in Halderman v. Pennhurst was unprecedented, authorities in the federal government determined that the results should be carefully tracked and monitored with all due scientific precision. An interagency agreement and pooled funding were devoted to support a longitudinal study of the outcomes of the exodus from Pennhurst. The contract for this, the Longitudinal Study of the Court-Ordered Deinstitutionalization of Pennhurst, was awarded to Temple University in 1979. It became the first and the largest study of its kind in the field of mental disabilities. The leaders of the Pennhurst Longitudinal Study kept their primary research question clear and simple: Are the people better off? The natural subsidiary questions were: In what way(s)? How much? And at what cost? The Pennhurst Longitudinal Study conducted an annual visit with every one of the 1,156 people who lived at Pennhurst on the date of the court’s 1978 order. Every family was surveyed by mail and/or phone every year as well. These visits extended throughout the five years of the federal study; because they produced such useful information, they continued afterward with state funding, transformed into a permanent monitoring system tracking the qualities of peoples’ lives. The study showed that the people were better off in just about every way measured—happiness, growth in skills and independence, productive activities, contact with family, safety, health, and even life span. The changes in family members’ sentiments were just as dramatic. Parents, siblings, other relatives, guardians, and close friends of people living at Pennhurst had overwhelmingly opposed the movement to community living. After all, they had been told for decades that institutions like Pennhurst were the “best option” for their loved ones. Even the most vocal opponents of community placement, however, became ardent supporters of community living once it had been experienced.

The Pennhurst Longitudinal Study proved that there is a better way than the old large-scale segregation and congregation models. Its findings have been replicated in more than 20 states and in many other nations. The outcomes of deinstitutionalization have consistently been found to be positive, both in the sense of improved qualities of life and in terms of cost-effectiveness. This scientific attention to “whether the people are better off ” now provides the foundation needed for action in other countries. The United Nations Convention on the Rights of Persons with Disabilities contains Article 19, which states in essence that no one should grow up in, or live in, an institutional setting. The deinstitutionalization of citizens with intellectual and developmental disabilities is a little-known success story in recent American history, and many of its greatest triumphs—the right to an education, the right to treatment and freedom from harm, the right to live in the community, and the first large-scale study of the outcomes of moving from institution to community—came out of the saga of the Pennhurst institution. The advances in Pennsylvania were pioneering indeed. Halderman v. Pennhurst was argued before the US Supreme Court three times. It became a significant part of the record that later helped pass the Americans with Disabilities Act in 1990 and influenced the later Supreme Court landmark decision in Olmstead v. LC (1999), which affirmed that people should not be presumed to “need” institutionalization and that a choice is required. It was even cited three times by Chief Justice Roberts in his opinion affirming the legitimacy of the Affordable Care Act in 2011. Because of the world-changing reforms, litigation, and research that surrounded Pennhurst in the latter half of the 20th century, there is a movement now afoot to create a place of dignified memory on the grounds of the old institution. As worthy a goal as that may be, it will only be a stepping-stone to the inevitable: there assuredly will be a national center to commemorate one of the great, but little known, civil rights movements. James W. Conroy is the founder and president of the Center for Outcome Analysis, a nonprofit scientific group that measures the results of human services (www.eoutcome.org). He is also co-president, with Pennhurst class member Jean Searle, of the Pennhurst Memorial & Preservation Alliance, a nonprofit devoted to creating ways to make sure that America and the world will never forget the struggles of the disability rights movement (www.preservepennhurst.org).

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Teachers’ Turn The History of Disability in the United States BY JESSICA TYSON

econdary school teachers encounter questions of disability and ability on a daily basis as they work with students with a wide variety of learning differences, including students with physical and intellectual disabilities. This issue of Pennsylvania Legacies presents teachers with the opportunity to consider that disability in the United States has a history that can be a fruitful topic of study for teachers and their students alike. “‘Confined to Crutches’: James Logan and the Material Culture of Disability in Early America,” by Nicole Belolan, presents the history of James Logan, a wealthy Pennsylvanian whose voluminous correspondence provides rich evidence of what it was like to live with a disability in 18th-century Pennsylvania. Belolan’s article contextualizes Logan’s experience by examining the material culture of disability accommodations of the time. Teachers might use this article as an opportunity to ask the following questions of students: 1 How have people with disabilities “improvised” in order to lead the lives they desired throughout history? Ask students to examine these cases and discuss the ways in which people with disabilities and their communities have used whatever means were at their disposal to ensure continuing participation in daily life. 2 Belolan presents an excellent question: “How did people like Logan live with physical disability before the emergence of the specialized, standardized medical furniture industry in the late 19th century

Pennsylvania Legacies Fall 2017

and the expectation of physical accommodations in public space in the 20th century?” Ask students to answer the question by starting with Belolan’s article and then extending their research into the history of physical accommodations for people with disabilities. 3 How has social class and economic status affected the experiences of people with disabilities? Belolan compares the experiences of James Logan, a wealthy landowner, and Richard Prestwood, a runaway “convict servant.” Students could discuss this case study and then research the varied experiences of Americans with disabilities later on in United States history, up to the present. Teachers may choose to connect this question to the history of federally funded programs for people with disabilities. “‘Detect early; Protect always’: Philadelphia Physicians and the Gospel of Eugenics,” by Dennis Downey, tells the story of Pennsylvania physicians and reformers who promoted eugenics in the early 20th century. The article details the history of forced sterilization of people with disabilities in Pennsylvania and discusses the move towards segregating and institutionalizing people with intellectual disabilities. Potentially quite disturbing for students, this article will provide teachers the opportunity to pose the following questions: 1 How was the eugenics movement emblematic of the Progressive Era? Ask students to analyze the continuities and differences between

the eugenics movement and other Progressive causes, considering who was involved, their philosophies, their methods of advocacy, and outcomes. This discussion could be especially useful for students as a way to add nuance to some textbook oversimplifications of the Progressive Era. 2 How have patients’ rights evolved over time in the United States? Downey describes the segregation and institutionalization of people with disabilities as well as the abuses they suffered, sometimes including exploitative medical testing. Students may be familiar with the infamous Tuskegee study of African American men with syphilis, which withheld treatment from its subjects. Ask students to discuss how American perceptions of patients’ rights have changed and why those changes have occurred. 3 How have various communities throughout American history perceived people with physical and intellectual disabilities? Terminology for people with intellectual disabilities popular in the early 20th century will be shocking to students today, as will the revelation that American eugenicist policies provided a model for some practices of Nazi Germany. Ask students to research the history of changing popular perceptions of people with disabilities, and ask them to contextualize those changes by investigating the disability rights movements of the second half of the 20th century.

“Manual Class,” photo in Sixth Annual Report of the State Institution for Feeble-Minded of Western Pennsylvania, Polk, Venango County, for the Year Ending September 30, 1902 (Oil City, PA, 1903).

“Mildred Scott: A Pennsylvania Woman at the Heart of the Early Disability Rights Movement,” by Audra Jennings, presents the history of the American Federation of the Physically Handicapped (AFPH) and a pioneering disability rights advocate, Mildred Scott. Scott, who contracted polio as a child, was instrumental in enacting the National Employ the Physically Handicapped Week, beginning in 1945, and advocating for more employment opportunities for Americans with disabilities. Teachers might use this article to explore the following questions: 1 How have various communities throughout American history perceived people with physical and intellectual disabilities? Students can compare the history outlined in Downey’s article with the story Jennings tells in hers. Clearly, perceptions of people with disabilities changed dramatically during the earlyto-mid-20th century. Ask students to research and discuss how and why this change occurred. 2 How have disability rights movements fought for the rights of people with disabilities? Jennings’s article details the links between the advocacy of AFPH and Mildred Scott and the subsequent passage of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990. Ask students to discuss how the work of Scott and other advocates built a foundation for those after them who fought for the rights of people with disabilities. 3 How was the disability rights advocacy of AFPH connected to the American labor movement? Ask students to contextualize the work of AFPH by researching the history of the fight for workers’ rights in the United States. 4 How does individual advocacy work shape social movements? Ask students to research the life of Mildred Scott, the disability rights advocate whose work Jennings discusses in this article. Students could compare the biographies and advocacy tactics of the leaders of many different social movements.

“Threshold of Liberation: The LittleKnown History of Deinstitutionalization of Americans with Intellectual Disabilities in the Late 20th Century,” by James Conroy, is about Pennsylvania’s important role in what Conroy calls “one of the most successful social revolutions of the 20th century.” Conroy’s article complements Downey’s history of the institutionalization of people with intellectual disabilities by detailing the history of the reversal of that policy, enacted largely as the result of litigation brought by advocates. Conroy also explains how a documentary film spread awareness about the abuses of institutions like Pennhurst. This article offers students the chance to consider the following questions: 1 How has American public policy concerning disability changed over time? Conroy writes that Samuel Gridley Howe, one of the first advocates of institutionalization of children with disabilities, changed his position, asserting that “[It is] best… bringing up the child among ordinary children, and subjecting him to ordinary social and family influences.” This philosophy is much closer to federal policy on the education of students with disabilities today than was the eugenics-inspired approach of institutionalization. Ask students to use Conroy’s article and additional research to trace the development of American education policy for children with disabilities. 2 How have works of film and literature functioned as tools of advocacy throughout American history? Ask students to compare the effect of Bill Baldini’s Suffer the Little Children with other important works such as Upton Sinclair’s The Jungle and Harriet Beecher Stowe’s Uncle Tom’s Cabin. For an extension project, as students to write proposals for (or to create) documentary films of their own on a contemporary issue that matters to them. 3 How have advocacy groups used the courts to advance the rights of people with disabilities? Conroy’s article explains the “national wave of

reform litigation” leading to the 1975 law that would become known as the Individuals with Disabilities Education Act (IDEA). Secondary teachers are familiar with IDEA, but their students—even those directly impacted by its mandates and protections— may not be. Ask students to analyze the decisions made in PARC v. Pennsylvania (1971) and Halderman v. Pennhurst (1974) and their relationship to IDEA’s provisions. Students can also discuss these suits in the context of other landmark court cases in American history brought by advocates, such as Brown v. Board of Education (1954). 4 How should Pennhurst and the people institutionalized within its walls be memorialized? Ask students to design a proposal for such a memorial or monument. Who should be named on it? What should it say? What form should it take, and why? Ask students to create this design after leading a discussion on historical monuments, memorials, and plaques. Taken together, these four articles offer inspiration for teachers and students to explore the history of disability in the United States. The questions raised by these articles will present students with the opportunity to consider the evolution of attitudes towards disability in this country. Ideally, engaging with this history will help students appreciate the many hard-won successes of the disability rights movement, which continues to shape our understanding of disability to this day. Jessica Tyson is a National Board– certified high school history teacher in DC Public Schools.

For more ideas on teaching disability history, check out HSP’s unit and lesson plans at http://hsp.org/education/for-teachers/ educational-resources/unit-plans

Fall 2017 Pennsylvania Legacies

Generations Researching Institutionalized Ancestors BY KATHLEEN BRANDT

amily researchers will often uncover an ancestor who was institutionalized due to mental illness or physical or intellectual disability. Researching these ancestors can be challenging. Uncovering mental health records from the various federal, state, and county repositories can be a slow and arduous process, and researchers may hit a brick wall due to present day federal privacy laws, state statutes, or lingering stigmas. Yet, the key to finding that elusive ancestor, proving or disproving family folklore, or assisting with family medical genealogy may be discovered in these institutional records. Prior to 1880, it was most common for almshouses to admit Americans with mental and physical disabilities. Almshouses, often referenced as “poor houses,” boarded aging, ill, and “insane” citizens. Others were cared for by asylums, families in private homes, or in prisons. Many asylums, almshouses, and institutions preserved their records. Other patient records have been discarded or are not publicly available for genealogical review. When patient health records are not available, re-creating an ancestors’ medical history is still possible. Gathering disability data using death certificates, military pension records, probate records, or medical records filed with court cases, cemetery records, and local newspapers often yields sufficient information to understand the history of institutionalized ancestors.

Identifying Institutionalized Ancestors A great place to begin this research is federal and state census records. In 1850, the Seventh Census of the United States enumerated 15,610 “insane,” 19,597 deaf and blind, and 15,787 “idiotic” persons. The names of enslaved persons were rarely provided, but they were identified by age, gender, and color on the 1850 and 1860 Slave Schedules. Persons with disabilities were also enumerated on the 1860 and 1870 federal censuses, which identified individuals as deaf, dumb, blind, insane, idiotic, paupers, and convicts. The 1880 census included additional classifications, such as “maimed, crippled, bedridden, or otherwise disabled.” Pennsylvania, the fourth-largest state in 1850, was home to 2,311,786 residents. Census records recorded 1,914 “insane” persons in the state—over 8 percent of the nation’s recorded population of persons with mental illness. Another 1,467 Pennsylvanians were identified as “idiotic.” Also documented that year were 1,145 “deaf and dumb” and 969 blind persons. By 1890 there were 162 mental hospitals and institutions for the “feeble-minded” in the United States. Most such institutions were

Pennsylvania Legacies Fall 2017

“State Institution for Feeble-Minded of Western Pennsylvania,” photo in Sixth Annual Report of the State Institution for Feeble-Minded of Western Pennsylvania, Polk, Venango County, for the Year Ending September 30, 1902 (Oil City, PA, 1903).

descriptively named: Public Hospital for Persons of Insane and Disordered Minds, Eastern Pennsylvania State Institution for the Feeble Minded and Epileptic, Syracuse State Idiot Asylum, York Lunatic Asylum. The Bureau of Justice Statistics’ Report on Crime, Pauperism, and Benevolence at the Eleventh Census of the United States (1890) identified mental hospitals that housed a portion of the 91,997 mentally ill and “feeble-minded” population. Researchers may also wish to visit the AsylumProjects.org wiki, which lists historical asylums, almshouses, state hospitals, reform schools, private institutions and sanatoriums.

Accessing Records A common obstacle to researching institutionalized ancestors is record availability. Every state has statutes specifying the distribution and release of patient records. In cases where records have survived, access may still be restricted. In 1751, a charter granted by the Pennsylvania legislature established hospital care for the sick, poor, and “insane.” In 1796, the Pennsylvania Hospital in Philadelphia built a building specifically designed for mentally ill patients. A new facility, Pennsylvania Hospital for the Insane, later named the Institute of the Pennsylvania Hospital, continued to serve the mentally ill until 1996. The Pennsylvania Hospital Historic Collections houses these mental health patient records. However, due to Pennsylvania state law (50 P.S. 7117 and 55 Pa. Code 5100.32), mental health patient records are confidential and not available for the public to review. For more information, visit the Pennsylvania Hospital Historical Records website: www. uphs.upenn.edu/paharc/.

Contrary to restricted states, open records may be retrieved from the originating facility, the state archives, or through digitized databases. One example, the New York Census of Inmates in Almshouses and Poorhouses, 1830–1920, may be viewed at Ancestry.com. Another reliable resource of digitized books and historical collections is FamilySearch.org. A simple catalog search using keywords such as “lunatic,” “insane,” or “blind” provides titles of their holdings. Unearthing African American historical medical records may be more challenging. Admitting “free coloreds” to state poorhouses and insane asylums prior to the Civil War was not widespread, although the Charleston, South Carolina, Almshouse did so in 1811. For more information on this topic, visit the “Disability and the African American Experience” section of the Museum of disABILITY History’s website (http://museumofdisability.org/disability-and-theafrican-american-experience/). In Pennsylvania, African Americans with mentally illness or intellectual disabilities were typically housed in a “colored” ward of a larger facility like that at Blockley Almshouse. FamilySearch.org has microfilm records of the Blockley Almshouse of Philadelphia that list inmates’ names and admission dates.

State Archives and Historical Society Records The Historical Society of Pennsylvania is the repository of the City Almshouse records, dating as early as 1767. For a catalog of these open records, visit http://discover.hsp.org. Researchers will also want to reference the open county records of the Pennsylvania State Archives. Record Group (RG) 23, entitled “Records of the Department of Public Welfare,” includes the Office of Mental Health. Audits of hospitals, correctional institutions, state hospitals, and the Pennsylvania Soldiers’ and Sailor’s Home in Erie are archived in this collection. Unique county records may reveal patient information. One example is the Dauphin County “Divorce Lunatic and Drunkard Indexes, 1880–1930,” held in RG-47. Researchers may review public access restrictions at www.phmc.pa.gov.

Court Records Reasons for ancestors’ institutionalizations may be detailed in court records. Those who disturbed the peace due to “insanity” or “feeblemindedness” were often sentenced to asylums and prisons through the courts. Court transcriptions and doctor information are routinely included in court records. Historically, women were disproportionately committed to mental institutions by disgruntled husbands. Researchers will discover cases of women confined to asylums for alcoholism, dementia, “moral insanity” (such as infidelity), contradicting a spouse, or being too opinionated. Insanity was a socially accepted excuse used to dissolve a marriage. When wrongly diagnosed of insanity, the wealthy used the courts to reverse sentences requiring institutionalization. Even First Lady Mary Todd Lincoln, who was committed by her son Robert, used the courts to reverse her sentence.

Will and Probate Records It was in the probate of Moses Scott of Illinois that the whereabouts of his first wife were revealed. Moses divorced his wife after declaring her insane, but, per a legal agreement, continued to financially support her care. His 1853 will, filed in Tazewell County, offered the mental state and whereabouts of Susanna, identifying her as “Susanna Scott an insane woman in Henerey [Henry] County in the State of Indiana.”

Military Pension Records For Wills Cox, a Civil War veteran who experienced mental health issues late in life, a complete medical history was ensconced in his military pension records, held at the National Archives and Records Administration (NARA) in Washington, DC. This veteran’s file included more than 100 pages of doctor’s examination notes, family correspondence, and Kansas Osawatomie State Hospital records. A bonus was the “Survey for Family Medical History” page. In it, the attending physician noted that Cox’s daughter had also spent time in the State Hospital’s mental ward.

Cemetery Records and Death Certificates FindAGrave.com, BillionGraves.com, and local searchable databases of interred loved ones identify burial places of institutionalized ancestors. For example, researchers can uncover the names of 1,362 patients interred at Dixmont State Hospital Cemetery at FindAGrave.com. The 1848 Dixmont State Hospital, founded by Dorothea Dix, was an early mental institution. The hospital history and official documents are stored at the Pennsylvania State Archives and the Historical Collections of Pennsylvania Hospital. Across the nation, patients were buried on the property of asylums or at neighboring cemeteries. The South Carolina State Hospital Cemetery Survey Index, hosted by the Richland County Library, identifies nearly 9,000 patients buried by the South Carolina Lunatic Asylum, the South Carolina State Hospital for the Insane, and the South Carolina Department of Mental Health. The original patient medical records are held at the South Carolina State Archives. Death certificates often specify the final resting place of the deceased. Although mental illness is usually not noted as the cause of death, a reference to the first known onset of a patient’s symptoms may be documented. Using these resources and record collections will enable the family historians to document the medical history of institutionalized ancestors. Kathleen Brandt, a3Genealogy, is an international professional genealogist, writer and keynote speaker. More information can be found on her website, http://a3genealogy.com. Fall 2017 Pennsylvania Legacies

Legacies for Kids Book Reviews BY CHRISTOPHER A. BROWN

It’s Okay to be Different By Todd Parr New York: Little, Brown Books for Young Readers, 2009, 32 pp. Ages 3–6. Todd Parr is a master artist/illustrator, and It’s Okay to be Different is a must-read for all preschoolers (and their caregivers). Parr uses simple language to introduce complex thoughts on ability, disability, and race. Every sentence begins with, “It’s okay . . .” reminding preschoolers through gentle repetition that differences should be celebrated and not ridiculed. “It’s okay to need some help”; “It’s okay to have no hair”; “It’s okay to be different. You are special and important just because of being who you are.” Every page displays rainbow-hued people, similar in style to many children’s illustrations. The characters’ cheerful expressions reinforce the text, and their color scheme allows all readers to see themselves in the story. Caregivers and educators will love the “break-away” moments this story creates for discussion and reflection.

Pennsylvania Legacies Fall 2017

Emmanuel’s Dream: The True Story of Emmanuel Ofosu Yeboah By Laurie Ann Thompson Illustrated by Sean Qualls New York: Schwartz & Wade, 2015, 40 pp. Ages 4–8.

Six Dots: A Story of Young Louis Braille By Jenn Bryant Illustrated by Boris Kulikov New York: Alfred A. Knopf Books for Young Readers, 2016, 40 pp. Ages 4–8.

Emmanuel Ofosu Yeboah was born in Ghana in 1977 with a severely deformed left leg. Yeboah attributes many things to this birth defect: His father’s absence from his life, the stigma that he would be a burden to the family, carrying the weight of a community that felt he was less than other children. Through this, Yeboah did not give up hope. With the support and love his mother, Yeboah persisted. He hopped to school daily and was able to play soccer. He even learned to ride a bicycle. As an adult, Yeboah cycled for over 400 miles in 2001 to raise awareness of disabilities. Thompson’s text is direct and informative, but it’s Qualls’s watercolor and ink illustrations that steal the show. Emmanuel’s story is depicted in warm tones that invite the reader into the narrative. The author’s brief note in the backmatter provides additional information about Yeboah’s work in Ghana.

This fictionalized examination of the early life of Louis Braille turns a historical figure into a relatable friend. As a young boy of five, Louis Braille had an accident in his father’s workshop that damaged his eye and led to an infection. The infection spread to his other eye, and within the year, Louis was permanently blinded. Undaunted, the Braille family helped Louis to adapt by creating a cane for him and creating tactile letters to help him learn to read. At the age of ten, Braille went to the Royal School for the Blind in Paris. The school was less than satisfactory to him until the students were introduced to the French Army code, which used punched paper symbols that immediately captured Braille’s imagination. Pennsylvania author Jenn Bryant creates a captivating story of Louis Braille’s childhood by combining historical facts with a fictionalized narrative. Bryant is a master of biographical studies, and this book is a thrilling addition to her canon. Kulikov’s mixed-media artwork provides a vibrant juxtaposition of pastels and chalky linework that interacts beautifully with Bryant’s text. The combination creates a dramatic and intense read. The back matter of the book includes a French pronunciation guide, Q & A, and a bibliography for further reading.

Wonder By R. J. Palacio New York: Knopf Books for Young Readers, 2012, 320 pp. Ages 8–12.

El Deafo By Cece Bell New York: Amulet Books, 2014, 248 pp. Ages 8–12.

The War that Saved My Life By Kimberly Brubaker Bradley New York: Dial Books for Young Readers, 2015, 320 pp. Ages 8–12.

Auggie Pullman, formerly homeschooled, is about to start fifth grade in a traditional classroom. This is making him nervous: Can he be accepted by his new classmates when he looks so different from everyone else? Auggie has been called a lot of names—Gross-out, Freddy Krueger, Lizard Face, and Freak—because he has a rare medical condition commonly known as Treacher Collins syndrome and a cleft palate. In Auggie’s young life, he’s already had 27 surgeries, but “His features look like they’ve been melted, like the drippings on a candle.” Even with this condition and the multiple surgeries, Auggie feels pretty normal. He’s very smart, brave, and kind. Will his classmates be able to look past the physical to get to know the person inside? Palacio’s novel is divided into eight sections that intersperse Auggie’s voice with those of his parents and classmates. As the narration jumps, readers are able to appreciate how a community reacts when confronted with something new.

This graphic novel memoir has a lot to say about growing up deaf. When Ceci was four years old, a case of meningitis caused her to become “severely to profoundly” deaf. Although she wears hearing aids and was quickly able to learn to read lips, everyday interactions in her life become challenging. When her family moves to a new town, Cece begins school in a first-grade class room that does not have separate classes for deaf children. Cece’s new hearing aids come with a microphone necklace for a teacher, and this allows Cece to hear things she shouldn’t—conversations between teachers, for example. This ability makes Cece feel like a superhero—one she calls “El Deafo.” According to Cece, “superheroes might be awesome, but they are also different. And being different feels a lot like being alone.” The reader will follow Cece as she grows and learns just what that really means. Bell tells her story beautifully through the use of anthropomorphic bunnies—a clever way to call attention to the hearing aids that are constantly in Cece’s ears and to subtly show how self-conscious she was of her ears as a child. Readers of all abilities will empathize with Cece during her trials and tribulations as she grows into a confident and funny young lady. An author’s note extends Cece’s biography and includes discussion points on Deaf culture.

Ten-year-old Ada’s world is torn apart— and opened to new possibilities—during the children’s evacuation of London in World War II. Ada was born with a clubbed foot—a condition that was untreated by her Mam and caused Ada to be imprisoned at home. Her captivity is made bearable by her younger brother Jamie; Ada cares for Jamie while Mam is absent, and his stories of the outside world encourage Ada to experience life. Ada begins to learn to walk, but her life is changed completely when World War II begins and children are evacuated from London to the English countryside. The siblings are housed with Susan, a grieving woman who is reluctant to open her home to children. For all her reluctance, Susan transforms Ada and Jamie’s lives and introduces them to a parental love that Mam did not provide. Susan helps Ada find the confidence in herself to finally live instead of merely surviving. When Mam reappears, Ada and Jamie’s world explodes— both metaphorically and literally. Bradley’s writing style is direct and honest; she creates a fully realized character in Ada. The harsh living conditions of WWII London are fantastically juxtaposed against the ignorance and abuse many children of the period suffered for physical and mental differences. Readers will be spellbound by Ada’s story.

Christopher A. Brown is Special Collections Curator of the Children’s Literature Research Collection at the Free Library of Philadelphia Fall 2017 Pennsylvania Legacies

Book Reviews BY BENJAMIN GOLDMAN AND BRENDON FLOYD

A Disability History of the United States By Kim E. Nielsen Boston: Beacon Press, 2012 Although the struggle for equal treatment of disabled Americans is still far from over, Kim E. Nielsen shows how far American society has come in its fight for civil rights in A Disability History of the United States. In early America, Nielsen argues, individuals with disabilities had the capacity to thrive as members of their communities. Over time, however, Americans came to link the value of a person to the condition of her or his body. Looking at individuals from America’s past, including Native Americans, Civil War veterans, and immigrants in the early 20th century, Nielsen reveals how disabled persons who once received care and support from their communities became increasingly isolated and marginalized through the ideologies of ableism and eugenics. By the early 20th century, disability became intertwined with class and gender; the poor were perceived as a blight on the American nation and thus targets for sterilization, while education was viewed as dangerous and disabling to the female mind. War veterans and the deaf were deemed “unemployable,” and immigrants with peculiar physical features were deported out of fear of deviant behavior or perceived inability to support themselves. Only through grassroots efforts did disabled Americans make it clear that they did not desire rehabilitation or dependency but the right to be independent and self-supporting. Nielsen delivers a book that tells both a dark tale from our national history and an emotional story of triumph over prejudice and discrimination. BG No Right To Be Idle: The Invention of Disability, 1840s–1930s By Sarah F. Rose Chapel Hill: University of North Carolina Press, 2017 Through rigorous research, No Right To Be Idle firmly establishes the evolution of disability as a social construct that resulted in degradation and segregation. Sarah F. Rose’s study begins in the late 18th and early 19th centuries, when individuals with disabilities began to lose their agency and workforce enfranchisement through the lack of

Pennsylvania Legacies Fall 2017

wage market opportunity. This disfranchisement led to further social isolation in an industrial society that valued efficiency as a qualification of economic citizenship. As Rose argues, “The problem of ‘disability’ . . . lay not in the actual bodies of disabled people, but rather in the meanings assigned to those impairments by employers and policy makers.” By the 1920s, people with disabilities, hindered by societal factors, struggled to prove their worth in an industrial capitalist society. Isolated from the job market, many became dependent on families that had fewer and fewer resources. Politicians’ responses to these conditions resulted in policies that pushed people with disabilities into poorhouses and other institutions, perpetuating the idea that this population was unable to care for themselves or participate in the workforce. Some reformers, such as Charles Bernstein and Henry Ford, worked to reintegrate disabled people into the workforce. Rose argues, however that stereotypes about the economic capabilities of people with disabilities still hinders this population today. BF The Ugly Laws: Disability in Public By Susan M. Schweik New York: NYU Press, 2010 “Disgusting,” “unsightly,” and “repulsive” are powerful words that undergirded “unsightly beggar ordinances”—more infamously known as “ugly laws”—throughout cities in the mid-tolate 19th century. Intended to rid the streets of panhandlers, beautify cities, and improve public health by banning the “diseased and deformed” from public spaces, these laws increasingly marginalized disabled and poor individuals and placed them under legal control by local governments. Relying on a wealth of sources, such as legal records, court cases, and firsthand accounts, Schweik traces the origins of these ordinances, first enacted in San Francisco in 1867 and quickly adopted by many other cities. Schweik links the ugly laws to a number of complex issues, such as the need for social reformers to differentiate between a “real cripple” and a “faker,” the treatment of disabled individuals based on gender or type of disability, and the interconnectedness of the ugly laws and the eugenics movement in the contexts of race

and immigration. Although these laws were rarely enforced, they reveal the immense power of discourse and the prevalence of “body politics” throughout America’s disability history. BG Enabling Acts: The Hidden Story of How the Americans with Disabilities Act Gave the Largest US Minority Its Rights By Lennard J. Davis Boston: Beacon Press, 2015 In an eye-opening work, Lennard J. Davis reminds the American public that one of the largest minority groups in the United States is not affiliated with race or religion but is comprised of individuals with disabilities. Combining primary source material with personal interviews, Davis constructs a concise history of the Americans with Disabilities Act (ADA) and demonstrates how it was one of the most important pieces of civil rights legislation in American history. Enabling Acts illuminates how the ADA was not a “paternalistic law but rather

one that people with disabilities themselves helped create and enact,” one that became “the template for legislation around the world.” Documenting the trajectory of ADA’s passage, Davis focuses on the process and the people behind this landmark legislation. Following a motley crew of advocates, politicians, and journalists from diverse economic and political backgrounds, Davis weaves together a narrative that demonstrates the “rights of people with disabilities as civil rights.” Anyone with a curiosity about disability or political history will find this book both enlightening and engaging. BF

Benjamin Goldman is an education intern at HSP and a graduate student at the University of Delaware. Brendon Floyd is a former middle/high school inclusion teacher and is currently working on a graduate degree in historical studies from Southern Illinois University, Edwardsville. He completed an education internship at the Historical Society of Pennsylvania during the summer of 2017.

LEG@CIES

INTERESTING PLACES TO EXPLORE ON THE WEB Museum of disABILITY History: Virtual Museum

Visionary Voices: Leaders, Lessons, Legacy

museumofdisability.org/ virtual-museum/

disabilities.temple.edu/voices/

The virtual “wings” of the Museum of disABILITY History, physically located in Buffalo, New York, allow users from throughout the world to explore histories of disability in the media; medical aspects of disability; disability in society, with special focus on African American experiences, eugenics, sports, and law; education and disability; disability rights advocacy; and disability history in New York State. Educational resources include useful timelines, image galleries, publications, pre-K–12th grade lesson plans, bibliographies, and links.

The Visionary Voices project of Temple University’s Institute on Disabilities aims to collect, preserve, and share the firsthand accounts of Pennsylvania’s groundbreaking history of fighting for the rights of people with intellectual disabilities by presenting over 30 oral history interviews with, and collecting and preserving the papers of, significant individuals in the disability rights movement. Users may explore documentary videos about this fascinating history; learn more about the individuals interviewed; and explore finding aids for significant collections at Temple University’s Urban Archives.

Image Archive on the American Eugenics Movement www.eugenicsarchive.org This fascinating and attractively designed resource primarily shares archival materials from the Eugenics Record Office at Cold Spring Harbor Laboratory, the center of American eugenics research from 1910–40. Users may browse or search the archive of over 2,500 images or explore virtual exhibits on the social and scientific origins of eugenics in America, the research methods of US eugenicists and the traits they studied, the flaws inherent in the eugenicists’ research, and the ways in which eugenics was nonetheless popularized and used to justify immigration restriction, antimiscegenation laws, and sterilization of people with disabilities.

EveryBody: An Artifact History of Disability in America everybody.si.edu/ What do a Daredevil comic book, a piece of curb, a typewriter, Ray Charles’s sunglasses, and a flexible straw have in common? All are compelling artifacts in the Smithsonian National Museum of American History’s exhibit on the history of disability in America. This online exhibit tells the story of Americans with disabilities through objects ranging from photographs, postcards, posters, and buttons to clothing, mobility aids, prosthetics, and straightjackets and challenges users to consider both how disability has been defined over time and the role of people, places, technology, and citizenship (encompassing work, laws, architecture, and activism) in shaping not just disability history but American history. RM Fall 2017 Pennsylvania Legacies

FOOD FOR THOUGHT

A Self-Advocate’s Journey BY JEAN SEARLE, WITH MARK FRIEDMAN

am the second oldest of 7 children. I have been moving since I was a little girl. I used to live in an institution called Allied Services and another called Still Meadow in Allentown, Pennsylvania. They were for people with disabilities. They were totally strict. You had to follow the rules. If you didn’t follow the rules, you got punished. The punishment was very painful and difficult. You had to sit in a corner in a chair with your hands behind your back, and they tied you with heavy-duty rope. The rope gave you sores on your arms. You had to stay there for a couple of hours. If you had to use the bathroom, they had to untie you, and then you had to scrub the bathroom floor with a toothbrush as a punishment. And the punishments got harsher and tougher. I couldn’t always advocate for myself. I had to keep my mouth shut or I got in trouble. The agencies set the rules. They told you what to do. I felt it was time for me to say something. I was tired of being pushed around and other people telling me I couldn’t understand or I was stupid. I was always told what to say and how to feel. I just came to a point that I was tired of that and it was time for me to stand up for myself and I have been doing that ever since. I became a self-advocate. What self-advocacy means for me is that people with disabilities can stand up and say whatever they want and let people know we live with the service system every single day. People with disabilities have a right to say what they want to say and feel what they want to feel. I kept telling my friends and family that I was tired of moving, but then again last year, I moved from Philadelphia to Harrisburg. I am starting my life all over again from scratch. Since I’ve been here, people have helped me to change my life to make it better for me and for the services that I am asking for. I had help in picking out a place to live, a place to work, and other stuff that a person with a disability may have a hard time with. When I moved to Harrisburg, I did not know where to start and how to get what

Pennsylvania Legacies Fall 2017

I needed in order to make my life better. People have been telling me for years what I need, and I’ve always told them that when the time is right, I will pick who I want in my life to help me. I am a very independent woman who knows what she wants and doesn’t want. I have been working for the Disability Rights Network for 23 years. They help people with disabilities and their families get legal help. They know the system and help people get their needs met. I am the policy advocate. I look at all the policy bills.

I write down what I think. I meet with legislators. I never thought that I would be working at a job for a long time. When I first started working for this agency, I did not know how long it would take for me to make a change in my life. I was very scared that one day I would be going back to the institution and starting my life all over again. One thing that I like about working for this company is that they are very understanding when it comes to me traveling to talk about things that are very important to me, which is people with disabilities who are still in

Jean Searle and James W. Conroy stand beneath the Pennsylvania Historical and Museum Commission marker commemorating Pennhurst’s history, Apr. 10, 2010. Photograph by Craig Guest. Courtesy of Pennhurst Memorial & Preservation Alliance.

Jean Searle and members of PA ADAPT protesting outside The Gallery in Philadelphia. Courtesy of Disabled In Action of Pennsylvania, Inc.

institutions and nursing homes. I get to travel alone by train or by plane, and I set up my own transportation and ride to and from different places. I have served on eight different boards of directors for organizations like TASH, the Pennhurst Memorial Museum and Preservation Alliance (PMPA), and others. TASH is an organization that works with people with disabilities every day. They get it. They understand what does on. They are fighters. They won’t stop until people get what they need. I am the first self-advocate to become the president of Pennsylvania TASH. My role is to work on issues that are important for people, like healthcare and proposed Medicaid cuts. I am also the co-president of PMPA, which is an organization that has a dream of building a museum on the Pennhurst property. We want to protect people from ever having to live in institutions again. And we want to protect our brothers and sisters so that no one ever has to go back.

I wanted to be on these boards because they didn’t have any people with disabilities serving on them. People don’t understand what we go through every day. I wanted to tell the people what we thought. I have worked for the Beyond Tokenism Project, funded by the Pennsylvania Developmental Disability Council, to help other disability organizations get more self-advocates on their boards so that they can hear what people with disabilities think is important. If I had one wish in life, it would be to work with every legislator in Harrisburg and DC to tell them that they should close every institution and sheltered workshop and have a self-advocate on their side from start to finish. Legislators should listen to us because selfadvocates live in the system every day. We know what is going on and we know what is best for ourselves. I love coming to work knowing that I am working for other selfadvocates who are not so lucky to have a voice so they can say what they want and don’t want in their life and give back to their community.

Disability history is important because people don’t know the history of people with disabilities. I think it needs to be told more. I don’t think we are doing enough. The question is how can we do more? How can we let people know that people with disabilities are in jeopardy of going backwards? How can we make sure people will never repeat what they did in the past? I hope people learn that people with disabilities are fighters. Maybe they could teach other people this history so we don’t have to repeat it again. Jean Searle is a powerful self-advocate who has worked for Disability Rights Pennsylvania for the past 23 years. Mark Friedman is currently an adjunct professor at the City University of New York. He has been a disability activist for three decades working to help people move out of state institutions and gain a voice for themselves through legal court cases and self-advocacy. Fall 2017 Pennsylvania Legacies

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Pennsylvania Institution for Feeble-Minded Children (circa 1887).