The AIDS Quilt: A Memorial

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This post originally appeared on the National Museum of American History’s blog O Say Can You See

Smithsonian Curator Dr. Katherine Ott invited students in Dr. Samuel J. Redman’s Museum/Historic Site Interpretation Seminar to explore the museum’s disability history collections and write blog posts sharing their research. The blogs are part of the celebrations commemorating the 25th anniversary of the passage of the American Disabilities Act.

Deborah Kallman, M.A. student, UMass History

Curator Dr. Katherine Ott invited students in Dr. Samuel J. Redman’s Museum/Historic Site Interpretation Seminar to explore the museum’s disability history collections and write blog posts sharing their research. 

Turquoise and purple diamond-shaped pin with text:

“The Quilt” button in the museum’s collection

Memorials are…

  • typically permanent
  • sites of mourning
  • places of remembrance

Some memorials…

  • mourn those we as a society are often reluctant to mourn

Few memorials…

  • are living memorials
  • travel
  • are quilts

The AIDS Quilt is all of these things. For me, it is also a story about a sister, a brother, a quilt panel, and a journey to acceptance 20 years after a doctor in Georgia signed the death certificate for my brother, Greg.

Black and white photo of a small child leaning on coffee table near two presents. Couch, lamp, books, and living room in background. He has on tennis shoes, pants, and shirt.

Greg’s first birthday, March 20, 1967

The AIDS Quilt has become a cultural expression of bereavement and a part of our heritage of coping with grief and mourning. The Quilt occupies a unique place within the history of quilting and of commemoration. It is not used as a utilitarian object for keeping warm, nor would some consider it a decorative object, and while some quilts have been used for fundraising and even as memorials, few weigh 54 tons.

Like quilts, memorials are also cultural expressions that take a material form. Fixed in time and space, memorials such as the Vietnam Veterans Memorial Wall in Washington, D.C., the eternal flame marking the grave of President John F. Kennedy at Arlington National Cemetery or the Arizona Memorial in Pearl Harbor all serve as sites of public and private mourning.

Unlike most memorials or quilts, the AIDS Quilt is a living memorial—growing and changing with the addition of each new panel. Over 48,000 unique three by six foot panels comprise the Quilt. Friends and family members design and make these mixed media panels celebrating the lives of mostly ordinary people. The Quilt isn’t quite a quilt in the traditional sense. It lacks batting and traditional motifs, although the use of mixed media evokes a modern-day crazy quilt similar to the Victorian crazy quilts of the late 19th century—quilts constructed of different types of fabric often cut into asymmetrical shapes and stitched together in unique and somewhat abstract patterns.

In addition to the Quilt’s importance as a memorial to those who some in society have been reluctant to mourn, it also serves as an important educational tool – both as a powerful image to increase AIDS awareness and HIV prevention and also through the archived biographies and stories that accompany each panel. These stories reveal the experience of life lived in the age of AIDS—lives like those of my brother Gregory Wayne Brand, who died on July 18, 1994 at the age of 28.

Little girl, smiling, sits on the lap of her uncle. They hold hands.

Greg’s last Christmas 1994 with his niece Ashley Kallman

Greg was a beloved brother and uncle who knew he was “different” at an early age, and in that time and place—the 1970s in rural Georgia—coming out was not an option. When he first found out that he was HIV positive in the late 1980s, it was easy to ignore the diagnosis and go about our daily lives—that is until the first symptoms appeared. As the illness progressed, with lesions, bouts of pneumonia, and other “opportunistic diseases,” coupled with repeated hospital stays, chest tubes and respirators, our daily conversations turned to discussions of T-cell counts, medications, and treatment plans and finally, to plans for his funeral service.

Three weeks before he died, Greg penned a letter to me entitled “Requests for My Homecoming.” He wanted a “nice casket (not too expensive),” to be buried in his black suit with a matching tie and handkerchief and a white shirt “pressed, please.” He wanted no jewelry except a red ribbon lapel pin and glasses were optional. Thinking about those left behind, his “primary request” was that two songs be played, “Beulah Land” and “Wish You Were Here,” and that the “lyrics be heard to minister to my family and friends.”

Greg rode the tempestuous waves of the disease and death with dignity and never questioned his faith. On that long ago morning in 1994 when he went “home,” I lost my best friend and a beloved brother who always had Jolly Rancher candies on hand, enjoyed watching his “stories” (soap operas) on television, took his niece to Pizza Hut during a snowstorm because he promised her pizza for dinner, and who, when he was about to impart some piece of gossip, would preface his words with the phrase, “I don’t mean to be ugly but…”

Studio portrait of man, sitting, smiling, wearing sweater, against black background

Greg, January 1993

I am finally ready to sew his memorial. Greg’s long-overdue Quilt panel will attempt to capture the essence of this somewhat ordinary life of an extraordinary brother.

Woman sitting on couch with turquoise fabric in her lap, holding some of its folds. Smiling. Gray couch, bookshelf in background.

The author sewing Greg’s Quilt panel

Turquoise fabric quilt panel with text saying:

Greg’s Quilt Panel

Deborah Kallman is a Masters candidate in the University of Massachusetts Amherst Public History Program. Learn more about the Quilt’s history.

What do disability history and Pinterest have in common?

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This post originally appeared on the National Museum of American History’s blog O Say Can You See

Smithsonian Curator Dr. Katherine Ott invited students in Dr. Samuel J. Redman’s Museum/Historic Site Interpretation Seminar to explore the museum’s disability history collections and write blog posts sharing their research. The blogs are part of the celebrations commemorating the 25th anniversary of the passage of the American Disabilities Act.

Rebecca Schmidt, M.A. alumnus, UMass History

Curator Dr. Katherine Ott invited students in Dr. Samuel J. Redman’s Museum/Historic Site Interpretation Seminar to explore the museum’s collections and write blog posts sharing their research. 

Screenshot of the museum's Pinterest boards, including a

The museum’s Pinterest boards cover a variety of themes, from American flags to retro mathematical devices.

On the surface, disability history and social networks such as Pinterest do not appear to have anything in common. One is a story of a fight for the passage of laws, such as the Americans with Disabilities Act (ADA) of 1990, which prohibited discrimination on the basis of disability. The other is a popular social media site that allows people to exchange information and ideas on everything from recipes, to crafts, and more.

White pin. Red text in bold typeface:

“Civil Rights Sign the Bill!” Button from 1989, in the museum’s collection.

However, the answer to the question is quite simple: Pins! Disability rights activists used pins for clothing (also called buttons or pin-backs) to convey quick, simple messages aimed at raising awareness for disability issues as well as trying to convince people to support the passage of the ADA.

As a person who grew up during the digital age, I have to confess that I thought pins were a thing of the past. It was not until my friend Chelsea showed me her backpack covered in buttons that I realized how wrong I was. When I asked her what was so special about buttons, she told me that the pins served multiple functions. For Chelsea, they are a way to “add personal flair to an accessory.” She told me that many of her pins were gifts from friends and that “it always feels good to carry something with you that is both portable and has sentimental value.” On the other hand, Chelsea also uses the pins to raise awareness for a number of issues, including her union, body positivity, gender politics, and reproductive rights. In this way, she uses them “to show solidarity with other activists in the community, or peers who might be struggling with these issues.”

Chelsea showed me that despite the proliferation of digital pins, physical pins still have the power to spread messages while also serving as a neat collectible. The power of physical pins made me wonder just how long these pins have inspired similar feelings of activism and collecting. I found out that political pins have been used for hundreds of years. Commemorative garment pins were used for every presidential election or administration. The museum even has a clothing button souvenir from George Washington’s inauguration!

In the 1820s, political candidates began to use buttons and other material objects specifically for campaigning purposes. In 1893, a Boston woman named Amanda Lougee invented a button where a textile surface was covered by a thin sheet of transparent celluloid (a material considered the first semi-synthetic plastic) with a fastener on the back. The Whitehead and Hoag Company from New Jersey acquired the patent to her design in 1896. According to Roger Fischer, author of the book Tippecanoe and Trinkets Too: The Material Culture of American Presidential Campaigns, 1828-1984, “no other innovation in the history of material culture in American politics ever gained acceptance so rapidly or on such a massive scale.” Lougee’s design is basically the same as modern-day buttons; the only real difference is the current use of paper rather than textile.

Yellow pin with cartoon face in center. The zero in

Before the 1990 Americans with Disabilities Act, Section 504 of the Rehabilitation Act of 1973 provided the core of legal protection for most people with disabilities. This button includes a caricature is of President Ronald Reagan. He had threatened to rescind 504 and other disability-related regulations.

In the early 20th century, pins became easier and cheaper to manufacture, which facilitated their use by politicians and activists alike. Disability activists certainly used this easy method of increasing awareness. One interesting pin in the museum’s collections is one that says “National Committee, 504, We are Watching” with a caricature of Ronald Reagan. The number “504” refers to Section 504 of the Rehabilitation Act of 1973, a predecessor to the American with Disabilities Act. The presidential administration of Ronald Reagan often sought to weaken the regulations of Section 504 and successfully eliminated disability benefits for nearly half a million people. Thus, this pin represents the views of a person who disapproved of the actions of Reagan and promised to continue watching the administration.

Physical pins have a long history in American culture; digital pins are much newer, but the digital version certainly has a significant place in current activism and communication. On Pinterest, users post virtual pins to boards based on a theme, such as Activism, Recipes, History, Places to Go, or Disability Pride. Though many users’ pins focus on crafting or fashion, there are no limits to the themes. The Smithsonian actually has many boards that showcase museum collections, such as Critters in the Collection and Fashion Backward.

The pins also contain links to their original source (i.e. a website). Physical pins work the same way. Through short, pithy sayings, the pins entice people to ask a wearer about what the button refers to. It’s the same thing as when Twitter users post short messages with a hashtag. If Twitter had existed during the fight to pass ADA, many activists might have used tweets containing #ADA or #SignTheBill, not only to draw awareness to their message but also to connect to the wider community of activists.

Pin pin. In yellow bold text:

A pro-ADA pin in the museum’s collection.

No matter what pins people wear on their clothes or on their social media pages, they ultimately are an expression of interests and causes, as well as membership in a wider community of people who share the same views. Anybody looking at my Pinterest page could immediately see that I am a graduate student from the Midwest/Upland South who loves pithy quotes, Christmas, and innovative home designs. Other people use Twitter, Instagram, and Facebook to convey their interests, often through the use of quick, catchy slogans, hashtags, or graphics—all of which could have been used on clothing pins in earlier times.

Blue pin with white text

“Equality, Justice, & Access for All” Button, in the museum’s collection.

Today, buttons are still fairly cheap and proliferate at social activities, sporting events,and rallies. Of course, social media pins and tweets are even cheaper and quicker, but it seems that physical pins have quite a bit of staying power for not only spreading political messages but also as a neat collectible.

Rebecca Schmitt is a graduate student in the Public History Program at the University of Massachusetts, Amherst. She is also an avid social media user and has a Pinterest board dedicated to all things history, featuring pins of objects from the Smithsonian collections. 

“Heroes Come with Empty Sleeves”

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This post originally appeared on the National Museum of American History’s blog O Say  Can You See

Smithsonian Curator Dr. Katherine Ott invited students in Dr. Samuel J. Redman’s Museum/Historic Site Interpretation Seminar to explore the museum’s disability history collections and write blog posts sharing their research. The blogs are part of the celebrations commemorating the 25th anniversary of the passage of the American Disabilities Act.

Matt Coletti, M.A. student, UMass History

Andrew Roy was 26 years old when Lieutenant Henry S. Farley lobbed the infamous first shot of the Civil War over Charleston Harbor on April 17, 1861. He answered President Lincoln’s call for 75,000 volunteers by travelling north from his native Maryland and enlisting in a Pennsylvania regiment. The young man paid dearly for his zeal when he was gravely wounded at the Battle of Gaines Mill.

A private in Company F, Tenth Pennsylvania Reserves, Andrew Roy and his unit rushed forward to bolster the Union line against tenacious Confederate assaults. During the charge, he was felled by a shot that destroyed the left side of his pelvis. Roy was then captured when the field hospital he was kept in was overrun by Rebel forces a few days later. Upon returning home from a Confederate prisoner-of-war camp in Richmond, Virginia, his transition to civilian life was plagued by the wound’s perpetual pain and numbness. Back home, despite holding a managerial position at a mine, Roy took weeks off from his job because of his health, relying on a disability pension for survival. Before his death in 1914, he lamented, “my lameness grows worse and the pain is more severe each year… my [left] foot seems dead.” Doctors commented that he was, “wholly unfit to care for himself and demands constant attention.”

Drawing on olive-colored paper. Dead and injured horses lay on ground. Some stand. Gun, carriage, a few men visible. White smears may indicate clouds, smoke, explosions.

Waud, Alfred R. (Alfred Rudolph), 1828-1891, artist. “Confederates advancing to the capture of disabled guns. Gaines Mills.” Drawing. From Library of Congress: Morgan collection of Civil War drawings.

Andrew Roy was one of over 275,000 northern soldiers wounded in the American Civil War—although he avoided amputation, unlike more than 20,000 fellow comrades who wore the Union blue. Following the death and destruction of the war, survivors faced the difficult task of finding significance in their suffering and sacrifice. Northern civilians and wounded veterans of the Federal Army offered an array of responses to the nation’s anguish through ritualized commemorations in the ensuing decades. Two dominant portrayals of disabled veterans emerged: pitiful cripples and a more popular version depicting the wounded as the epitome of masculine patriotism. Scars, limps, and amputations were honorifics that symbolized the Union man’s character as an individual who had sacrificed dearly to preserve the Union.

Religion helped to define public perceptions of wounded veterans, suggesting that a soldier’s torment was ordained by a higher power for the national good. As Henry Palmer wrote in a handwriting competition for Federal soldiers who had lost a dominant hand:

“My right arm, as if conscious of approaching dissolution, seemingly bequeathed unto the left arm, all the properties of which it died, seized and possessed.  The seal of this Last Will and Testament was the bloodseal of amputation—Patriotism, Love and County, and Equal Rights were the subscribing witnesses to the instrument—The body from which the arm was severed, was the Executor—In Heaven’s Court, the will was proved, allowed and recorded.”

Black and white portrait of man in military uniform with two sleeves pinned up.

A carte-de-visite featuring a wounded veteran of the Union army taken some time during the 1860s. Many veterans with a visible, permanent wound would pin their shirt and/or pant sleeves together instead of opting for free artificial limbs that were considered very uncomfortable.

Despite the misery, Union veterans attempted to demonstrate self-reliance. Perhaps the greatest example of independence was Major General Oliver Otis Howard, who rose to become the head of the Freedmen’s Bureau after the war. Veterans argued that their injuries encouraged increased social and economic independence, and some used their wounds for political leverage. Lucius Fairchild, who received an amputation after being seriously wounded during the Battle of Gettysburg, won the Wisconsin gubernatorial election of 1866 and became a prominent veteran-affairs spokesperson for former members of the Federal Army. As such, scarred veterans as virtuous harbingers appeared in the popular culture for a public concerned about the profound effects of the war on wounded soldiers. “The Empty Sleeve: A Song with Chorus” by P.A. Hanaford and Reverend J.W. Dadmun of Boston, Massachusetts, was a popular sheet music written in 1866. Its chorus venerated Civil War veterans:

“Three hearty cheers for those who lost

An arm in Freedom’s Fray

And bear about an empty sleeve

But a patriot’s heart today.”

The lyrics correlate physical sacrifice and triumphant patriotism. This righteous empty sleeve iconography was not equally bestowed, however. African American veterans went unacknowledged, and were barred from most veterans’ organizations. Veteran Will Thomas, who participated in the same contest as Henry Palmer stated, “I don’t expect to win a position as a clerk, that being ascribed on count of my color.” Thus, at least within the confines of northern society, the physical changes that black veterans like Thomas suffered were largely ignored by the community. Listen to the song here. This post’s headline also comes from the song’s lyrics.

Sheet music cover with fancy geometric border and text saying

The sheet music, “The Empty Sleeve” created by P.A. Hanaford and Reverend J.W. Dadmun, circa 1866, in the museum’s collection.

While many men spoke of their injuries in a variety of ways, many more remained silent about the nature of their wounds. While some wounded veterans celebrated personal success later in life, others endured a lifetime of hardship. Roy did not say how his wound affected his patriotism despite professing great esteem for the late Abraham Lincoln in a speech given several decades after Lee’s surrender to Grant in Wilmer McLean’s parlor. The stories circulated by thousands of northern veterans and civilians illustrated the complex post-war psyche that attempted to explain the presence of the permanently wounded soldiers who had served in “Mr. Lincoln’s army.”

Note: The phrase has been borrowed from the first book in Bruce Catton’s trilogy chronicling the history of the Army of the Potomac.

Matt Coletti is a graduate student in the Public History Program at the University of Massachusetts Amherst. His academic interests include the public memory and contemporary collective interpretations of the American Civil War, as well as the psychological repercussions of war on individual and community life in a historical context.

Smashing barriers to access: Disability activism and curb cuts

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This post originally appeared on the National Museum of American History’s blog O Say Can You See

Smithsonian Curator Dr. Katherine Ott invited students in Dr. Samuel J. Redman’s Museum/Historic Site Interpretation Seminar to explore the museum’s disability history collections and write blog posts sharing their research. The blogs are part of the celebrations commemorating the 25th anniversary of the passage of the American Disabilities Act.

Julie Peterson, M.A. student, UMass History Department

n 1945, Jack Fisher of Kalamazoo, Michigan, celebrated a victory, one of the first of its kind in the United States. Jack, a disabled veteran and lawyer, was elated because his hometown had just installed the nation’s first curb cuts to facilitate travel in the downtown area for wheelchair users and others who couldn’t navigate the 6-inch curb heights on downtown sidewalks.

Black and white photo from street level looking up at two feet in wheel chair and a high curb.

Inaccessible curb, late 20th century. Division of Medicine and Science collections.

Today, this seems like an odd thing to rejoice about, since curb cuts are now so commonplace in cities throughout the U.S. However, sidewalks and public spaces in the built environment were not always so accessible to people with disabilities. The development of curb cuts and the concept of accessible public spaces has been long in the making and has only become possible through the hard work of activists like Mr. Fisher, the passage of federal legislation on accessibility requirements, and developments in design.

Wheelchair-using individuals have navigated obstacles in the built environment since the first wheelchairs. In the 1940s and 1950s, a large contingency of veterans returned from World War II with mobility-related injuries. Many of these individuals pushed for changes to the built environment to make college campuses and public spaces more accessible to wheelchair users and other disabled people. On the University of Illinois campus, disabled veterans got around campus any way they could, sometimes hitching rides on service trucks since sidewalks did not have accessible ramps for them to move from building to building.

Black and white photo of men in wheelchairs with signs that say

World War II veterans protest on behalf of hospital services in New York City in 1951; Courtesy of Paralyzed Veterans of America. Division of Medicine and Science.

Disability activism was not confined to veterans’ groups; others protested for accessible spaces in urban areas by physically taking to the streets and smashing curbs to create their own accessible ramps. In the 1970s, Hale Zukas and other founders of the Independent Living Movement in Berkeley, California, organized to establish a wheelchair route through the University of California campus and the town of Berkeley. They even built curb ramps themselves, covertly laying asphalt in the middle of the night to create their own wheelchair accessible infrastructure.

Eric Dibner, a member of the Independent Living Movement, joked during an oral history interview, “Well, you didn’t hear about the nitroglycerin where we were blowing up curbs and… jackhammers in the middle of the night, where we’d go and we’d jackhammer up all these intersections, and then the city would have to fix them.” Of course this story was exaggerated, but having to come up with their own solutions for overcoming architectural barriers was an everyday reality for these activists.

Rough, brownish black chunk of concrete with faint black writing on it.

In the late 1970s and early 1980s, the organization ADAPT in Denver, Colorado, broke apart sidewalks to protest the lack of accessibility features. This Denver curb cut made in 1978 is in the museum’s collection.

While these activists were taking their own measures to ensure the world they lived in was accessible to them, federal legislation increasingly recognized rights for disabled Americans. In 1968, the Architectural Barriers Act was passed in Congress, which required that federally funded facilities remove obstacles in the built environment. While limited in scope, this breakthrough in legislation reflected the work of disability activists and laid the groundwork for the 1990 passage of the Americans with Disabilities Act (ADA). The ADA prohibits discrimination and provides for equal opportunities for people with disabilities, laying out accessibility standards for buildings and public spaces throughout the U.S.

White pin with purple graphic and text.

This pin in the museum’s collection depicts people with disabilities using space in the built environment: in a wheelchair, with a cane, and using other people as a support system. It is from 1989, when the ADA was under debate in Congress.

The design world also responded. Ronald Mace, an architect and designer at North Carolina State University in Raleigh, along with other architects, developed a set of design principles known as Universal Design. While Universal Design principles are typically applied to building interiors, these design concepts are also used to enhance outdoor physical space and make sidewalks, streets, and other public spaces easily navigable for everyone.

Disability activists have refused to accept the status quo. Since the mid-20th century, they have persisted and influenced public policy, resulting in legislation that made discrimination against those with disabilities illegal. Today, through processes like Universal Design, we continue to see a shift in society’s mindset toward individuals with disabilities. Designers are approaching the built environment with ever-more innovative solutions to urban architectural obstacles facing disabled people.

Julie Peterson is a master’s student in the Public History program at the University of Massachusetts, Amherst. She studies 20th century U.S. urban history, social justice and mass incarceration, and museum interpretation and public programming.

From “Invalid Corps” to full active duty: America’s disabled soldiers return to war

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This post originally appeared on the National Museum of American History’s blog O Say Can You See

Smithsonian Curator Dr. Katherine Ott invited students in Dr. Samuel J. Redman’s Museum/Historic Site Interpretation Seminar to explore the museum’s disability history collections and write blog posts sharing their research. The blogs are part of the celebrations commemorating the 25th anniversary of the passage of the American Disabilities Act.

Kayla Pittman, M.A. alumna, UMass History

I wanted much to go to war
and went to be examined;
the surgeon looked me o’er and o’er
my back and chest he hammered.
Said he, “You’re not the man for me,
Your lungs are much affected,
And likewise both your eyes are cock’d
And otherwise defected.”
“So now I’m with the invalids,
and cannot go and fight sir,
The doctor told me so, you know,
And so it must be right, sir!”

Despite being jeered by songs like the one above (which appears in The Civil War Letters of Colonel Charles F. Johnson: Invalid Corps edited by Fred Pelka) and nicknamed “the Condemned Yanks” and “the Cripple Brigade,” the Union Army’s Invalid Corps eventually grew to twice the size the U.S. Army had been prior to the Civil War. In desperate need to free up fighting men for the front lines, the Union established the Invalid Corps in April of 1863.

Poster with headline in bold text:

Invalid Corps recruitment poster. Courtesy of the U.S. National Library of Medicine.

The U.S. National Library of Medicine’s online exhibition, Life and Limb: The Toll of the American Civil War, states that the Corps filled its ranks with soldiers who had sustained combat wounds in the line of duty and was divided into two battalions based on physical ability. Men with less severe physical disabilities were assigned to the First Battalion. The First Battalion preformed garrison duty and even engaged in combat, whereas men who were more severely disabled were assigned to the Second Battalion. Soldiers serving in the Second Battalion were given duties as nurses, cooks, and clerks. Upwards of 1,400 men rejoined the war effort by joining the Corps even after they had been honorably discharged for their injuries.

Despite its formation as a “corps of Honor,” the Invalid Corp was confronted with humiliation on a daily basis. The sky-blue uniforms of the Corps defined them apart from the regular army. As stated in Union Soldiers and the Northern Home Front, edited by Paul A. Cimbala and Randall M. Miller, the Corps’ association with convalescent camps and hospitals was also problematic as many in the regular army viewed those locations as “asylums for shirks and cowards.” But above all, the name Invalid Corps evoked shame and stigma.

The military used the initials I.C., meaning “inspected, condemned,” to stamp items considered damaged and substandard. Soldiers serving in the Invalid Corps pushed back against the association between the military shorthand of I.C. and the name of their Corps. Their objections lead the Adjunct General’s Office to ultimately change the Invalid Corp’s official title to The Army Reserve Corps (ARC) in 1864 and to command the purchase of regulation dark blue uniforms. By the end of the war, the ARC boasted 1,000 officers in command of over 60,000 enlisted men. Despite an outpouring of public support, the War Department officially disbanded the Army Reserve Corps in March of 1869.

Black and white photo of small, two-story house with balcony and porch. Approx. 20 soldiers in uniform sit and stand outside the house.

In 1865, Company D of the 10th U.S. Veteran Reserve Corps was photographed in Washington, D.C. Photo courtesy of the U.S. National Library of Medicine.

By the conclusion of World War I, the federal government re-adopted the idea of putting disabled soldiers back to work although none returned to war. As stated on the American Association of People with Disabilities webpage, “After World War I, several laws were enacted recognizing for the first time the country’s obligation to individuals injured in service.” Both the Smith-Hughes Act and the Smith-Sears Veterans Rehabilitation Acts promoted the vocational rehabilitation of injured veterans. In the 20th century, disabled peoples were seen as broken and in need of fixing. Progressive Era federal policy makers believed that work rehabilitation would “cure” disability by reconstructing war cripples.

All-text poster with red border.

Poster promoting rehabilitation published in 1919. Photo courtesy of the Library of Congress.

Today, developments in prosthetics have allowed the tradition of wounded men returning to war to resume. According to U.S. News and World Report, the Army has returned upwards of 167 soldiers with major amputations to the wars in Afghanistan and Iraq on active duty.

Of this number, some have gone back to the front lines while others have support roles. A study conducted by the American Academy of Orthopedic Surgeons has shown that soldiers from combat units have a greater return rate than those in non-combat units. Soldiers with disabilities wishing to return to the battle must petition for active duty assignment and pass examination by the Physical Evaluation Board. Of 395 amputees who went before the Board between 2000 and 2006, 16.5% returned to active duty, which is a 14.2% increase since the 1980s. Throughout the ages military men have continued to don their uniforms and return to the battle despite physical disabilities. Developments in prosthetics and rehabilitation have made this reality more apparent than ever as an increasing number of America’s wounded warriors soldier on.

Kayla M. Pittman is a graduate student in the History Department at the University of Massachusetts Amherst.

8 ways in which the American Disabilities Act changed everyone’s lives

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This post originally appeared on the National Museum of American History’s blog O Say Can You See

Smithsonian Curator Dr. Katherine Ott invited students in Dr. Samuel J. Redman’s Museum/Historic Site Interpretation Seminar to explore the museum’s disability history collections and write blog posts sharing their research. The blogs are part of the celebrations commemorating the 25th anniversary of the passage of the American Disabilities Act.

Samantha Lombard, American Studies major, University of Massachusetts Amherst

The American Disabilities Act, signed in the White House on July 26, 1990, was groundbreaking for people with disabilities. But it was also groundbreaking for all American people, as it attempted to prevent the discrimination against people with disabilities that prevented them from having the full rights of citizenship. It gave people with disabilities rights for which many thousands had been fighting for decades. The disability-rights movement was a grassroots movement, and in many ways it culminated with the signing of this Act. It is the first comprehensive list of laws specifically addressing the rights of people with disabilities. It radically challenged old, discriminatory laws, and touched almost every area of society, as transportation and employment policies were updated. For the first time in history, the United States government officially defined the rights of people with disabilities. It ultimately changed the way America viewed people with disabilities as a whole.

Blue and white symbol, person in wheelchair

This sign was created to indicate handicap accessible places, such as bathrooms. Wikimedia Commons.

Before the American Disabilities Act was signed:

  1. People using wheelchairs who wanted to ride a bus or train would need to abandon their wheelchairs.
  2. A restaurant could refuse to serve a person with disabilities.
  3. A grocery store could prevent a disabled person from buying the goods there.
  4. If a person in a wheelchair could actually physically enter a library, he or she might not be able to check out library books, because of the wheelchair.
“I can’t even get to the back of the bus”; ADAPT activists protesting for accessible transportation, Philadelphia, 1990

People with disabilities fighting for their rights. Courtesy of Tom Olin, photographer

  1. “Homosexuals” could be considered disabled. There was no previous legal definition of disability and homosexuality was considered a disease until 1973.
  2. Any place of employment could refuse to hire a person just because of his/her disability.
  3. A person with disabilities could legally be paid less just because of his/her disability, even if he or she was doing the same work as another person.
  4. Because the restrooms on trains were not accessible, people often had to wear precautionary diapers when they traveled.
Photograph of train car and platform. Women with cane standing at car entrance. Yellow detectable warnings strip in front of her.

Surface changes underfoot, as a way to signal the need for caution, are now required in many environments. Division of Medicine & Science collections.

Want to learn more? Here’s a short list of new laws initiated by the ADA:

  • Section 12132 of this title and section 79 of title 29, it shall be considered discrimination for a public entity to fail to have at least 1 vehicle per train that is accessible to individuals with disabilities, including individuals who use wheelchairs, as soon as practicable but in no event later than the last day of the 5-year period beginning on the effective date of this section.
  • General rule. No individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation by any person who owns, leases (or leases to), or operates a place of public accommodation.
  • Homosexuality and bisexuality. For purposes of the definition of “disability” in section 12102(2) of this title, homosexuality and bisexuality are not impairments and as such are not disabilities under this chapter.
  • General rule. No covered entity shall discriminate against a qualified individual on the basis of disability in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions, and privileges of employment.
  • General rule. No covered entity shall discriminate against a qualified individual on the basis of disability in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions, and privileges of employment.

You can find the full text of the ADA here.

Samantha Lombard is an undergraduate History and Art History Major at the University of Massachusetts Amherst.

Please touch the objects: Tactile models and alternative approaches to curation

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This post originally appeared on the National Museum of American History’s blog O Say Can You See

Smithsonian Curator Dr. Katherine Ott invited students in Dr. Samuel J. Redman’s Museum/Historic Site Interpretation Seminar to explore the museum’s disability history collections and write blog posts sharing their research. The blogs are part of the celebrations commemorating the 25th anniversary of the passage of the American Disabilities Act.

Charles Weisenberger, Ph.D. Student, UMass History Department

 

3D model of Mt. Vernon with red roof, white walls, green grass. Many columns and windows.

Tactile model of George Washington’s Mount Vernon from the late 1930s. This object is in the museum’s Division of Medicine and Science.

Don’t touch the objects! Many people who have visited a museum have encountered this awful phrase. Charged with preserving the condition of museum collections, curators and museum staff strive at all costs to ensure the safety of the objects in their exhibitions. This usually means concealing priceless artifacts behind glass cases, far from the hands of the public. But what if the public cannot access the information without their sense of touch? Thousands of visually impaired visitors need alternative methods for accessing the objects and information featured in museum exhibitions.

Audio tours can provide visitors with information, but they cannot fully replicate a visual sensory experience. Tactile exhibitions that emphasize touch translate the sensory experiences of a museum to visitors with low-vision as well as others who learn by touching. These exhibitions enable visitors of varying visual capacities to actively engage the materials and lessons of a museum. In the years since the passage of the Americans with Disabilities Act (ADA) in 1990, museums have increasingly made their exhibitions more touchable and interactive. This trend has improved the overall museum experience for everyone.

Educators have long used tactile learning concepts to teach students with low-vision. In the early 20th century, schools for the blind incorporated scale models of historic structures into their lesson plans. Students used these tactile models to feel their way through history and imagine the spaces of the past. The museum’s collection includes a wooden tactile model of the main house at George Washington’s Mount Vernon plantation. The model was used by students at the Michigan School for the Blind during the late 1930s.

Two black and white photos. Top photo: a little boy and little girl touch Mt. Vernon model with guidance of teacher. Bottom: landscape section of the model, with trees and dirt works.

Students and teacher working with tactile landscape model, 1930s. Division of Medicine and Science collections.

The tactile model may not offer an exact replica of the mansion, but it does offer advantages the original site cannot. By holding the president’s home, students can grasp the intricacies and details of colonial spaces. They can learn nuances inexpressible in only written or visual depictions. Tactile models allow people to take the past into their own hands.

Contemporary museums have returned to this concept and have begun to explore entire tactile-based exhibitions. In 2007, the Arizona Capital Museum introduced a touching exhibition for children on Arizona’s state symbols. The exhibition featured braille images on rotating tiles with relief sculptures. The exhibition was accessible to children with limited vision, and also appealed to anyone with an active imagination.

Exhibitions that are both accessible to people who are blind and also highly interactive literally go hand-in-hand. The Penn Museum in Philadelphia used tactile techniques in its “Insights into Ancient Egypt” touch tour program to bring to life the wonders of ancient Egypt. Docents with different visual abilities led the tours, and visitors were able to handle replicas of ancient Egyptian tools used in mummification. The art world has also begun to incorporate tactile features into the curation of renowned paintings. The Museo del Prado in Madrid has started to exhibit three-dimensional copies of its masterpieces. These models allow visitors to trace the elaborate contours of famous paintings with their bare hands.

The advancements of digital technology have further increased the viability of tactile exhibitions. In an analog world, curators could only print their information on flat, two-dimensional surfaces that neither helped people with low vision nor promoted active engagement. Text can be boring regardless of visual ability. Modern three-dimensional printing allows curators to print accurate replicas or scaled versions of their rare artifacts. Curators can use the technology to produce easily duplicated models that people can touch. This allows visitors to interact with an exhibition’s objects while ensuring the safety of the original pieces. Museums can appeal to wider audiences while also preserving their collections. The Smithsonian has already started to use three-dimensional printing to interpret the Cooper Hewitt Mansion. Tactile exhibitions can effectively reconcile the interests of museum visitors with the preservation obligations of museum staff.

Color photo of 3D printer. Black box with screen-in area inside and glowing blue light. Duct tape and tools are on the table around the printer.

Three-Dimensional Printer at the “Skark!Lab” in the Smithsonian’s Lemelson Center for the Study of Invention and Innovation.

One of the challenges with tactile models is that they are often produced for people with low-vision by people who have high-vision. The models make sense to people who can see them, but do they make sense to people who can only touch them? Designers can overcome this discrepancy chiefly through outreach and collaboration. By including people with low-vision in the production process, designers with high-vision can better translate their visual knowledge into the spatial frameworks of low-vision thinkers. Tactile models function as an interface between cultures of perception. One perspective does not take precedence over another. Tactile exhibitions can initiate dialog between people with different understandings of the world. Together, they can create new perspectives of the past.

Nonetheless, tactile-based exhibitions do not offer a perfect panacea for the problems of curation. No technical approach can eliminate the controversies of interpreting human culture. For example, the tactile model of Mount Vernon reflects the prejudiced paradigms of its era. In the early 20th century, American schools and museums privileged the lives of famous founding fathers over the experiences of ordinary people, women, and people of color. In the 21st century, educators and museum staff must also represent the people who labored to build and maintain such imposing structures. Professional staff can still present a model of George Washington’s mansion to the public, but they must also take into account the slave cabins where most of Mount Vernon’s inhabitants lived and the inequality that facilitated Washington’s opulence. Tactile models present an excellent tool for museum curators, but tactile exhibitions are only as effective as the messages they convey.

Curator and exhibition teams use tactile exhibitions to interpret the past for people who perceive the world differently. Not everyone can visualize an ornate painting, and not everyone shares the same aesthetic taste. Some people prefer to experience the world through their hands. By handling objects, people with high and low vision can form new connections unavailable through sight alone. Tactile exhibitions thus allow everyone to learn more. By making exhibitions accessible to people with limited vision, curators also improve the museum experience for everyone.

Charles Weisenberger is a graduate student in the public history program at the University of Massachusetts, Amherst.

Sitting-in for disability rights: The Section 504 protests of the 1970s

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This post originally appeared on the National Museum of American History’s blog O Say Can You See

Smithsonian Curator Dr. Katherine Ott invited students in Dr. Samuel J. Redman’s Museum/Historic Site Interpretation Seminar to explore the museum’s disability history collections and write blog posts sharing their research. The blogs are part of the celebrations commemorating the 25th anniversary of the passage of the American Disabilities Act.

Andrew Grim, Ph.D. student, UMass History Department

For 25 days in April 1977, a group of roughly 150 disability rights activists took over the fourth floor of a federal building in San Francisco. They would not leave, they said, until President Jimmy Carter’s administration agreed to implement a four-year-old law protecting the rights of people with disabilities.

The activists and their supporters outside the Health, Education, and Welfare (HEW) building wore pins and T-shirts, and waved banners declaring their support for Section 504 and for the rights it guaranteed to people with disabilities. The material culture from the sit-in continues to communicate to the world who these activists were, why they were there, and what they were fighting for. The objects left behind, like the memories of those who were there, are traces of a moment when people organized to secure their rights, to reject charity and pity and instead demand equality.

Yellow button with text saying in capitalized letters "Handicapped Human Rights: Sign 504 ACCD" in bold text.

A button worn by an activist during the Section 504 protests. Gift of Carr Massi.

Section 504 of the Rehabilitation Act of 1973 helped pave the way for the ADA. Under the law, no program receiving federal funds could discriminate against people with disabilities. But the law was never properly put into effect. Officials in Richard Nixon and Gerald Ford’s administrations developed but never implemented a set of regulations for the law.

By the time Jimmy Carter took office in 1977, the disability rights community felt it had waited long enough. They demanded that Carter sign and implement the regulations immediately. Instead, Joseph Califano, Carter’s new HEW Secretary, appointed a task force to review the regulations. However, the task force lacked a representative member from the disability community. Activists feared that the regulations would be watered-down. The American Coalition of Citizens with Disabilities (ACCD) insisted that the regulations be signed unchanged. If they were not signed by April 5, the ACCD would act.

As the date arrived with no response from Califano, hundreds of people with disabilities and their supporters sat-in at HEW offices in several cities around the country. Most of the sit-ins lasted only a day or two, but in San Francisco the sit-in lasted nearly a month.

Hand-written letters on white background saying "Sign 504 now!" The zero in the number "504" is the handicapped symbol (person in wheel chair).

Poster made by Ken Stein during the 25-day occupation of the San Francisco HEW building.

The choice to hold a sit-in as opposed to other tactics had symbolic significance. Sit-ins were used effectively with the 1960s civil rights movement. More importantly, a sit-in upended popular notions of people with disabilities as weak, incapable of asserting themselves, or as objects of pity. Activist Judith Heumann explained, “Through the sit-in, we turned ourselves from being oppressed individuals into being empowered people. We demonstrated to the entire nation that disabled people could take control over our own lives and take leadership in the struggle for equality.”

On the first day of the sit-in, San Francisco HEW officials did not take the protestors seriously. Heumann later recalled “At the start of our demonstration at the HEW offices, officials treated us with condescension, giving us cookies and punch as if we were on some kind of field trip.” They soon realized that the protestors would not be placated, and that they planned to occupy the building until Califano signed.

The sit-in brought together a cross-disability coalition of activists. According to Judith Heumann, “Blind people, deaf people, wheelchair users, disabled veterans, people with developmental and psychiatric disabilities and many others, all came together.” The experience created a strong sense of solidarity. “We overcame years of parochialism,” Heumann later remarked.

The day-to-day experience of a month-long sit-in would be grueling for any group, but it posed particular challenges for the Section 504 demonstrators. Some of the San Francisco activists truly risked their lives. One demonstrator later recalled, “discomfort and anxiety was the order of our day to day existence. Everyone faced these questions, How can I get my meds? Where will I sleep? What about food?”

The demonstrators received support from outside groups, such as the Black Panther Party, which provided them with food throughout the sit-in. But many went without the care of attendants, or back-up ventilators, catheters, or other necessary equipment. Bill Blanchard, a wheelchair user, later remarked “I seem to remember spending the first couple of nights sleeping in my chair because it meant less transferring and less having to ask strangers for assistance.”

Kitty Cone recalled “wolfing down” sleeping pills at night to get through the pain. The sit-in also meant a loss of privacy. “Every morning,” one demonstrator remembered, “you could come across people involved in various forms of personal care activities and in various stages of dress and undress.”

The physical effects of the occupation lasted long after the sit-in ended. For Brad Lomax and Steven Klein, both of whom had multiple sclerosis, the stress led both men to have, according to Cone, “pretty severe exacerbations of their MS.” Nevertheless, for Blanchard as for many other demonstrators “The discomforts… meant nothing in comparison to the importance of 504 being signed.”

The 504 occupation of a federal building galvanized people and created a strong sense of purpose and pride. Kitty Cone made this hand-drawn T-shirt of a person in a wheelchair and the words “504 Unchanged, SF, DC” while inside. The protests drew national attention and on April 28, 1977, the government finally released the regulations

A hand-drawn T-shirt made by Kitty Cone during the sit-in.

On April 28, 1977, Califano signed the Section 504 regulations unchanged. While the disability rights community would have to wait until the 1990 Americans with Disabilities Act for more robust protections against discrimination, Section 504 was a significant victory. 2015 marks the 25th anniversary of the signing of the ADA. This year it is important not only to celebrate what the disability rights movement has achieved but also to take stock of how we got here. The sit-ins were, according to Kitty Cone “the public birth of the disability rights movement… For the first time, disability really was looked at as an issue of civil rights rather than an issue of charity and rehabilitation at best, pity at worst.”

Andrew Grim is a PhD. student in the history department at the University of Massachusetts Amherst.

From iron lung to independence

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This post originally appeared on the National Museum of American History’s blog O Say Can You See

Smithsonian Curator Dr. Katherine Ott invited students in Dr. Samuel J. Redman’s Museum/Historic Site Interpretation Seminar to explore the museum’s disability history collections and write blog posts sharing their research. The blogs are part of the celebrations commemorating the 25th anniversary of the passage of the American Disabilities Act.

Gabbie Chapman, M.A. student, UMass History Department

 

Large tube-shaped machine with six legs on rolling wheels. Blue in color with small windows.

An early version of the iron lung built in 1931. This device was first used in the Providence City Hospital in Providence, Rhode Island, and is in the museum’s collection.

In September 1955 at the age of six, Mark O’Brien was roused from his sleep by a sharp pain in the pit of his stomach. His parents immediately phoned a doctor and rushed him to Boston Children’s Hospital. His memory of that night remained fuzzy throughout his life, but in his memoir O’Brien recalls the distinct hospital smell and fluorescent lights as his family “wandered from room to room, nurse to nurse, and doctor to doctor” trying to get answers. He was unable to understand why there was so much fuss over a stomachache; a nurse eventually ushered him into a room full of beds where he laid down and slipped into a thirty-day coma. “When I finally woke up in the big, dimly lit room, I first saw my stuffed bear” then realized “I was lying in a strange machine, paralyzed from the neck down.”

The “strange machine” O’Brien found himself in was a tank respirator, commonly referred to as an iron lung. Invented in 1927 by Philip Drinker and Louis Agassiz Shaw Jr., the iron lung became a staple within medical facilities after John Haven Emerson designed a more cost-effective device four years later. Iron lungs were used during the early stages of polio when the virus attacked the central nervous system, which in extreme cases led to the inability to control the muscles responsible for swallowing and breathing. After a few weeks, most patients recovered and were able to breathe independently, but some, like O’Brien, required the use of assistive respirators for the rest of their lives.

Black and white photograph with five people in iron lunch machines, their heads on small pillows. Nurses with face masks and white hats attend.

The iron lung ward in 1955 at Haynes Memorial Hospital in Boston, Massachusetts, 1955.

As O’Brien describes it, an iron lung was a “horizontal metal cylinder on legs, about three feet wide and perhaps eight long, weighing about 650 pounds.” Inside the cylinder was a movable mattress that gave the iron lung the more endearing nickname of “the cookie tray.” The head was the only part of the body visible, sticking out at one end with an adjustable collar fit around the neck to keep the device airtight. Tank respirators operated like a vacuum with a motor creating and releasing pressure around the body. Air would be pushed into the lungs as decreased pressure forced the chest up. The lungs exhaled when the vacuum released the pressure, pulling the air out. Iron lungs were one of many assistive devices used to help patients breathe, but none were as effective and reliable as the iron lung.

Black and white photo. Woman with glasses sits in striped, very upright chair. Large piece of machinery presses on her chest. Tube connects from the machine to her mouth.

A typist using a cuirass respirator, 1958.Cuirass respirators functioned similar to iron lungs, but applied pressure to a much smaller surface area and were portable.

Despite being paralyzed, patients encased in the protective steel of the respirator became suddenly aware of their bodies. They were forced to relearn the most basic activities of life—breathing, eating, and talking. In his memoir, Larry Alexander, who contracted polio in his twenties and spent the rest of his life using an iron lung, remembers his realization that speaking can only be done when exhaling. “In the lung my exhalations were fixed and rigid. If I were in the middle of a sentence when my breath was finished, I had to wait till the next one came to continue.” Eating and drinking also had to be timed to the rhythm of the machine to avoid choking. For those who permanently lost the ability to breathe, the iron lung became a part of their physical being.

Black and white photo man with beard and glasses and friendly smile turns to face camera, wearing tie with apples on it. He sits in a

Ron Mace, who contracted polio as a child, became founder of the field of Universal Design in the 1960s and ’70s. Universal design ensures equity in public spaces and facilities.

Learning to let a machine take over the functions of the body was often an isolating experience at first. It took time to feel independent while needing the assistance of a machine. When returning home, however, those hurt by polio felt a new form of seclusion. Discrimination and the built environment led many polio survivors, including O’Brien, to become advocates for disability rights. One of the distinctive features of the disability rights movement that emerged in the 1960s and 1970s was that it was led by people with disabilities. O’Brien remembers early reformers as “good people who thought of themselves as helping the helpless,” but they took for granted the thoughts and desires of those they cared for. “They never asked us what we wanted.” If they had, O’Brien would have said one word: “Freedom.”

Color photo of young man in Iron Lung machine, his head on a blue pillow. Photos and stickers decorate the machine. Family photo hangs on wall behind him.

Mark O’Brien in his iron lung at his parents’ home. Courtesy of Jessica Yu. 1996.

On July 4, 1999, Mark O’Brien passed away in Berkeley, California, at the age of 49, having obtained the freedom he desired. In 1978 he enrolled as an undergraduate at University of California, Berkeley, eventually graduating with a master’s degree in the school’s journalism program. While there, he cultivated a love for writing and poetry, which he used as an outlet for civil rights activism. His first published essay in CoEvolution Quarterly printed in the spring of 1982 “combine[d] the elements of autobiography with an argument for independent living.” Rather than placing disabled people in nursing facilities, he fought for attendant programs that hire people to work in homes rather than hospitals. O’Brien realized how different his life would have been without this form of healthcare and worked to extend this advantage to all. He shared his life story with the hope of improving the rights and legal protection of the disabled community.

Patrick and Sarah Henry: Mental illness in 18th century America

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This post originally appeared on the National Museum of American History’s blog O Say Can You See

Smithsonian Curator Dr. Katherine Ott invited students in Dr. Samuel J. Redman’s Museum/Historic Site Interpretation Seminar to explore the museum’s disability history collections and write blog posts sharing their research. The blogs are part of the celebrations commemorating the 25th anniversary of the passage of the American Disabilities Act.

Rose Gallenberger, M.A. student, UMass Department of History

“Give me liberty, or give me death!” School children learn these words that Patrick Henry exclaimed on the eve of the American Revolution. However, that is nearly all most Americans know about this Founding Father from Virginia. This year’s anniversary of the Americans with Disabilities Act is a good time to recover the history of how people in the past, including statesmen such as Patrick Henry, understood disability. Henry’s wife, Sarah Shelton Henry, dealt with depression and violent outbursts. Despite recommendations, together they refused to place her in a hospital, instead providing care for her at home until her death.

Violet postage stamp featuring portrait of Patrick Henry

Patrick Henry postage stamp, issued October 1958. Collections of the Smithsonian’s National Postal Museum.

Patrick and Sarah knew each other from childhood and fell in love. They married in 1754 at a very young age, even by 18th century American standards. He was 18 and she 16, and together they had six children. After the sixth child, Sarah became increasingly unwell.

There is little information on the specific nature of Sarah’s illness, nor is there a record of Sarah’s participation in decisions about her treatment. But there is no doubt that she experienced mental instability. She was ill in 1774 with signs dating back to 1767. She was emotionally unsettled and became violent at times, to the point that she had to be restrained by a strait-dress (an early form of a strait-jacket) to prevent her from harming herself and others. Patrick knew he had to do something to help his wife and care for his family.

Mental illness was understood very differently in the 18th century compared to now. The populace generally viewed it as sinful and criminal, a sign of the devil. A new hospital in Williamsburg, Virginia, the Eastern State Hospital, opened in 1773 specifically for the mentally ill. It served as an alternative to prison or other punishments. The treatments were harsh but also common—patients were bled, blistered, subjected to pain, shock, and terror. They were dunked in water and restrained, resulting in injury or death. The fact that there was an institution separate from almshouses and hospitals for treating the mentally ill is noteworthy. Eastern State Hospital represented progress in care for the mentally ill.

Color photo of large brick building with turret in center, white windows, on grassy lawn

The Hospital’s rebuilt original 1773 building as it stands today in Williamsburg, Virginia Reconstruction. Photograph by Ryan Lintelman via Wikimedia Commons. February 28, 2006.

Patrick Henry, who had spent much time in Williamsburg, knew about the hospital and refused to send Sarah there. The Henrys were a family of some wealth, and this probably helped in the decision for Sarah to remain at their home, Scotchtown Plantation. They created a small apartment for her in a sunny section of the mansion’s basement. Patrick assigned a slave to serve as a nurse to her, and he also aided directly in her care. He and the children visited her often, and their eldest daughter and her husband moved home to help care for her mother. Sarah died in 1775, possibly of suicide, but historians do not know the exact cause of her death.

White building with steps at entrance and grassy lawn, color photo.

Scotchtown, residence of Patrick and Sarah Shelton Henry. Courtesy of Preservation Virginia.

Patrick had the option to send Sarah away to an institution, and although ground-breaking at the time, hospitalization would have resulted in a much lower quality of life for his wife. Whether his decision was a result of love for his wife or concern for his reputation and political ambition, his approach to mental illness was remarkably innovative for the 18th century. The example of Sarah Shelton Henry and the Eastern State Hospital mark the beginning of a wave of reform in the approach to mental illness and disability.

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