THE OLMSTEAD SUPREME COURT DECISION AND FREEDOM FIGHTERS
It is difficult to overstate the resilience required to fight back against imprisonment in an institution. We have confidence in physicians and believe medical professionals know best. Over 90 percent of Americans in a 2019 survey stated that they trust doctors.1 American institutions have been run by physicians and nurses since their inception, and many families in the early decades of the twentieth century were encouraged to give up babies born with disabilities to be cared for in such institutions, which required large amounts of capital and human resources to fully function. On May 23, 1974, two men who had been in Indiana state institutions, Leo Sonnenburg and Gerald Hartnett, filed a class action lawsuit seeking compensation for labor performed while they were patients. The complaint contended that the plaintiffs were entitled to payment under the minimum-wage and overtime provisions of the Fair Labor Standards Act. Their lawyers also saw another legal angle, a violation of the Thirteenth Amendment to the United States Constitution, which prohibits slavery and indentured servitude. The appellate-court judge defined the class members as “all patient workers who have labored in the State of Indiana Institutions for the Mentally Handicapped or Mentally Retarded from May 23, 1970 to December 31, 1974.” The appellate court found in favor of the 7,400 “patient workers” and awarded $ 28 million in back pay for jobs performed in the institution, ranging from working in a hair salon cutting other patients’ hair, preparing meals, cleaning, working on vehicles, doing landscape work, providing nursing care, and even working in the institution’s bowling alley. Most of these were found to be full-time jobs. In June 1991, however, the appellate court was overruled by the Indiana Supreme Court in Bayh v. Sonnenburg, where the court found that the labor fit within the civic-duty exception to forced labor.2 “The court looks to whether mental patients’ work had ever been compensated throughout history, because the constitutional convention records make clear the framers did not intend to create new rights to compensation. The 1816 constitution makes clear that the institutionalized may be made to work when they’re institutionalized.” There was only one dissenting opinion; Justice Dickson found exceptions with the concept of involuntary servitude: “Other jurisdictions have found that patient labor does not fit squarely into the civic duty exception. The requirements of the extended full-time work go way beyond the civic duty requirement.” And Dickson argued that the right to compensation was not applied across the board. “Working at the state’s mental institutions was not required of all citizens. The labor of patient/workers was not demanded for merely a few days each year. It was required full-time during their confinement.”3 That Dickson used the term “citizen” rather than “patient,” even if only once, was promising. There would be no $ 28 million in back pay for the 7,400 citizens held captive in Indiana institutions, but others would take up the fight in just a few years.
For most professionals embroiled in the legislative back-and-forth related to subminimum wages, the years from 1994 to 1999 were spent like so many others, living in their own homes, working, enjoying life in freedom, but for Lois Curtis, those five years, plus many before, had been spent in an institution where among other tedious tasks, she performed work for subminimum wages, ate food not of her choosing, and spent her days isolated, uncommunicative, and trapped behind cinder block walls and razor wire. She would end up in the Oval Office meeting President Barack Obama in the fall of 2014, but before that day arrived she would endure more isolation, segregation, and neglect.
Diane Cobb was a nurse at Georgia Regional Hospital in the 1980s. She clearly remembers Lois as a teenage patient: “Lackluster and isolated. She did what many of the patients did—walk about the hospital grounds unkempt and uncared for. Her hygiene was horrible. Lois was sullen and depressed. She was withdrawn into herself and rarely smiled. That’s how she survived that environment. She didn’t look forward to something she couldn’t keep, like a friendship with someone or a rapport with a staff person. There wasn’t any nurturing within the psychiatric unit, only more meds and endless monotony.”4 Since Burton Blatt had exposed America’s treatment of its citizens with disabilities in Christmas in Purgatory, the entanglement of residential and vocational settings was still common, if not fully residential, then in the form of day centers, which looked like the day rooms in Blatt’s institutions.
Georgia Regional Hospital–Atlanta (GRHA) sits on 174 acres of real estate in Dekalb County. Nearby is a facility run by the Georgia Bureau of Investigation, along with Georgia State University’s Perimeter College, and an area called Rovena Acres. South River and Blue Lake are nearby. GRHA, one of the sites run by Georgia’s Department of Behavioral Health and Developmental Disabilities (DBHDD), was still viewed by most as an institution. As we’ve stated earlier, human services, especially disability services, tends to alter language to make the programs and services sound more palatable. Hospital sounds normative, while institution reminds us of One Flew Over the Cuckoo’s Nest. Lois Curtis was admitted into Georgia’s disability and mental-health systems at age eleven for various dubious reasons. Lois was considered unruly, lacking judgment, possessing a defiant personality, and the list goes on and on. Lois was finally able to leave the institution for good at the age of twenty-nine. From a poor family, without means for even modest private care, Lois struggled in school. Then, as today, the understanding of the interplay between intellectual and behavioral health disabilities is minimal.5 There are clinical assessments and research, but most of the work in this area fails to consider how those diagnostic labels impact a specific human being, like Lois Curtis. However, the outcomes are usually predictable, with poverty, lack of opportunity, and abuse being the trifecta that produces the most trauma.6
Elaine Wilson had been homeless and in and out of institutions nearly forty times. “Elaine was shunted among institutions and shelters from age 15 and subjected to shock treatment and psychotropic drugs ‘that knocked her out and ruined her kidneys,’” said her mother, Jackie Edelstein.7 Lois and Elaine were provided essentially what the state of Georgia had the most faith in—institutional settings replete with vocational programs that included sheltered work in the form of janitorial jobs. Neither Lois nor Elaine had been sentenced for criminal charges, but they had been involuntarily committed to what most would consider imprisonment. Georgia’s Department of Behavioral Health and Developmental Disabilities system was subsequently sued by the Department of Justice, but for now it would take another strong woman to help Lois and Elaine experience self-determination, to take on their cause and stick with it.
Sue Jamieson met Lois and Elaine in 1995 in her role working for the Atlanta Legal Aid Society, which was founded by the Atlanta Bar Association in 1924 to assist the poorest of the poor with legal issues and advocacy they could not afford—specifically, protection against neglect, abuse, and exploitation. Sue Jamieson had started her legal career assisting poor people in Florida, but by the early 1980s she was in Atlanta and eager to begin a project that would focus on people confined to the grounds of Georgia’s institutional system. Like Burton Blatt before her, Jamieson found the treatment and living conditions in these places isolating, inhumane, and wasteful of human potential. Deinstitutionalization in the United States had begun in the 1970s. Many people living inside institutions had left, but it would be erroneous to characterize the country’s investment in institutions as a bygone, historical fact.
Today the number of people living in institutions is far lower, but there are new terms used now. As of 2018, there were 11,682 registered mental-health treatment facilities in the United States. Within those, 8,956 were less than twenty-four-hour outpatient facilities while 1,920 facilities were twenty-four-hour inpatient facilities.8 The phrase “twenty-four-hour residential setting” is a way of saying “institution” inside the disability industrial complex, and in 2018 there were 1,932 twenty-four-hour residential settings.9 Almost 130,000 people labeled with intellectual and developmental disabilities still live in places called “intermediate care facilities.”10 The names change, but the conditions rarely do.
Once Sue Jamieson had met Lois and Elaine, she went about advocating for them to have the appropriate supports to live in the community through a Medicaid waiver, known as a Home and Community Based Services (HCBS) waiver. Essentially, states can create their own HCBS waivers, providing they meet the guidelines and parameters set in place by the Centers for Medicare and Medicaid (CMS), part of the federal Health and Human Services (HHS). HCBS waivers are designed to “meet the needs of people who prefer to get long-term care services and supports in their home or community, rather than in an institutional setting.” It’s a strange way to describe a set of funding and policy tools specific to each state’s budget and political leadership, since it’s hard to imagine anyone preferring to live in an institution. For Lois and Elaine, that question had been settled; both women, along with their remaining family members, had tried over and over to leave the institution behind, but poor funding and a lack of coordination returned Lois and Elaine back inside the chain-link fences again and again. Both women had been warned by institution staff that if they were discharged, they would have at their disposal only homeless shelters. Still they persisted.
Life in institutional settings had changed some since the 1960s when Blatt and Kaplan took their covert pictures of naked patients, cowering in corners. There was more oversight now, and one might find people fully clothed, but it would be overly optimistic to concede that Lois and Elaine’s care in the 1980s and 1990s was completely sound. There were long days with little but the janitorial chores that never seemed to end. They were prescribed multiple pills, swallowing them after taking a cluster from a nurse’s hand along with a paper cup of water. Incidents of misconduct among unrelated people living in any institution is common, and both women had infractions, arguments, and what the disability industrial complex likes to call “behaviors,” as in “she’s having behaviors.” The phrase is intended to communicate something, but even those who use it can’t define it. Still, the phrase “she’s having behaviors,” can be heard in nearly any setting related to disability—certainly in sheltered workshops and work activity centers. Lois and Elaine had both been labeled as “having behaviors.”
Mostly the days were monotonous for Lois and Elaine, with few visitors and even fewer variations in schedule, activities, or food. The Civil Rights of Institutionalized Persons Act (CRIPA) of 1980 had been passed to protect confined people, those with intellectual disabilities and mental-health disabilities in institutions, as well as people living in nursing homes. CRIPA is enforced through the special litigation section of the Department of Justice’s Civil Rights Division. The focus in determining the application of CRIPA is narrow and must fall within one of the following six areas: 1) the rights of people in state or local institutions, including: jails, prisons, juvenile detention facilities, and health care facilities for persons with disabilities; 2) the rights of individuals with disabilities to receive services in their communities, rather than in institutions; 3) the rights of people with disabilities who interact with state or local police or sheriffs’ departments; 4) the rights of youth involved in the juvenile justice system; 5) the rights of people to have safe access to reproductive health care clinics while confined; and 6) the rights of people to practice their religion while confined to state and local institutions.11 People who may be at risk in these scenarios may also merit an investigation, meaning that there are conditions present that could allow for abuse. CRIPA can be enforced under this “at risk” guideline too. People in institutions, their family members or advocates, and current or former employees can initiate a complaint. Many times local newspaper reports have tipped off the DOJ about CRIPA violations, and an investigation is started. The law allows other concerned citizens to act on behalf of someone with much less power.
By the mid-1990s CRIPA was in full effect. Lois and Elaine were asking the state of Georgia to assist them in moving out of the institution because that was their preference; they preferred to have their supports and care provided in the community, not within the grounds of an isolating institution like GRHA. The basis of their claim was the Americans with Disabilities Act, not yet even a decade old at the time. These women, fighting for their rights, were embarking on the first bold steps that would lead to taking on the state of Georgia. It’s important to understand how terrifying this would be for Lois and Elaine. The state seal was prominent within the institutional grounds; they had tried to leave before but had either ended up homeless or back inside the institution. It was a brave endeavor.
Sue Jamieson recalls the logic of the Olmstead case. “Our theory was that Lois and Elaine were confined in a state hospital and that professionals believed they didn’t need to be there (in the institution) but they also felt that they would need appropriate services in the community. The ADA says exactly that: if you are providing services to a person with a disability, those services must be provided in the most integrated setting appropriate to the individual.”12
For the “most integrated setting” to be the community, though, the state of Georgia, specifically its Department of Behavioral Health and Developmental Disabilities, named the Department of Human Resources in the 1990s, would have to develop individual budgets for Lois and Elaine and allow the two women access to the HCBS waivers. While the institutions are certified by the Centers for Medicare and Medicaid, the funding is entirely different, much more of a group rate/bed reimbursement model than the highly individualized HCBS waivers it would take to make sure that Lois and Elaine were getting the right supports in the most integrated setting. Inside the disability industrial complex, access to these waivers is often fraught with competition, making the situation susceptible to pressure. The proverbial squeaky wheel gets the grease. Sue Jamieson helped Lois and Elaine harness their voices to make noise.
Tommy Olmstead was born in Macon, Georgia, and attended Mercer University there. He was the CEO of an office equipment company for more than forty years. His political life started on the Bibb County Commissioners Board, but by 1986 he had been elected to the Georgia state senate for three consecutive terms, where he chaired the Health and Human Services Committee that, among other issues, focused on disabilities and mental health. In 1995 Governor Zell Miller appointed Olmstead as the commissioner of the Department of Human Resources, where the HCBS waivers and the institutional funding and operations were administered. The state’s Medicaid agency was a necessary collaborator in setting up the HCBS waivers. Olmstead would end up as one of the defendants in Lois and Elaine’s legal fight for freedom.
In early 1996 Sue Jamieson and the Atlanta Legal Aid Society filed their case on behalf of Lois Curtis and soon added Elaine Wilson. The plaintiffs won considerable legal points related to the ADA in front of United States District Court Judge Marvin Shoob and in the Eleventh Circuit Court of Appeals. Both courts confirmed that Georgia was required under the ADA to serve Lois and Elaine in the community rather than confining them in an institution. The state of Georgia, concerned that the case would set a precedent, appealed to the United States Supreme Court. Olmstead and the state of Georgia argued that although the women were cleared (medically and psychologically) for a more integrated setting to receive their services, the state’s funding constraints and the obligation to restructure existing models of treatment and care prevented the option for community living.13 But just because a state’s human-service bureaucracy can’t innovate and provide support consistent with the ADA does not mean it has no legal responsibility to do so. This fact would echo across the ensuing decades as the lawsuits pertaining to sheltered workshops and subminimum wages proceeded.
On December 14, 1998, the United States Supreme Court agreed to hear the appeal of Georgia and Olmstead after their loss in the Eleventh Circuit, presided over by Judge Elbert P. Tuttle, who had been a hero of the desegregation movement. The attorneys and advocates for Lois and Elaine believed that Tuttle’s background in civil rights was a good sign. Oral arguments at the Supreme Court took place on April 21, 1999. There would be a focus on the ADA but also several citations to the Rehabilitation Act of 1973, specifically Section 504. In this way, one can now see how the Rehab Acts of 1973, the ADA, and the Olmstead decision create a through-thread, a kind of line woven from one to the other, such that a violation in one part of a person’s life (where they live) is connected to others, such as where and how they work.
The oral argument before the Supreme Court lasted a little over an hour, but the efforts behind the scenes, the endless trail of legal paperwork, and the toll on everyone involved was intense. More than four years had passed since Sue Jamieson helped Lois and Elaine take the first tentative steps toward reclaiming their lives. Inside the institution at GRHA, both women had been essentially labeled as “unemployable,” based on erroneous assessments like the IQ test and a battery of vocational and social instruments that were supposed to predict a person’s ability to work and live in the community. During the time they waited for their case to make its way through the legal process, they had been assisted by other advocates, people who were trying to help the two women determine what their futures might look like, including how they would spend their days working.
Gillian Grable was one of those advocates who routinely picked up Lois at the institution for forays into the community, brief trips to help with the transition, but she and Lois had a history that dated back to when Lois was just twelve years old. As part of a family visiting program, Grable had met Lois and her mother in public housing as part of an initiative known as Family Visitors. The idea was to provide friendly services that could help connect people to needed resources but with a basis of engagement squarely centered on citizenship, rather than professional intervention. Gillian recalled Lois’s early interest in art. “She was already a person who needed to create. Earrings, drawings, Lois was a creative child.”
Their relationship would span decades, but it wasn’t easy for either of them, especially when Lois became a young adult and her civil rights were violated. At one point, Lois spent a stretch of over 700 days in Georgia state-run institutions. “When I’d take her back, after I’d somehow gotten permission for a day pass, she’d plead with me, ‘Can I come home with you?’” Both women, highly emotionally intelligent, would weep. However, they were also strong human beings who wouldn’t stop hoping for something different. Gillian Grable convinced a bureaucrat with a big heart to listen to how Lois could be supported to live outside the walls of the institution, using a planning technique that would allow for both paid staff and a dedicated inner circle of unpaid citizens who would help Lois find an inclusive, productive life. It was at this stage that Grable introduced Lois to Sue Jamieson.
“That place was something else,” Grable recalled. “I’d been to many institutions before, and while it certainly wasn’t the worst, there didn’t seem to be much logic surrounding the rules about trips off the campus. I got the feeling things were handled from just whatever popped up day-to-day.” The trips Grable took Lois on were also to help with planning for what life would be like after leaving GRHA. Freedom after such long stints in institutional settings can be traumatic. It was clear from the start that Lois liked to draw; she had small notebooks with penciled portraits and salvaged cardboard with little caricatures sketched in ink. Lois had stories too, things that had happened to her, that had happened to others she knew in the different places where she had been placed. “She told me lots of things on the car rides, many of them too sad to recount, but she also had dreams of having her own place, friends, choosing what she wanted to wear and eat. It was astonishing she hadn’t had control of those things. She’s so smart.” Gillian and Lois worked on quilts together too, along with daily routine activities that most of us take for granted, like shopping, going to the hair salon, and choosing a movie to watch.
Gillian Grable and her husband, a judge, traveled to Washington, DC, to witness the Supreme Court oral arguments. Grable often cites a phrase that is moving in its simplicity: “Lois led us all.” After the court heard oral arguments in April 1999, it took another two months before a judgment was announced. Justice Ruth Bader Ginsburg announced the Court’s decision, a “qualified yes” on the question of whether the ADA’s prohibition of discrimination by a public entity required the “placement of persons with mental disabilities in community settings rather than in institutions.”14 The Supreme Court created three requirements for such action: (1) treatment professionals determine that community placement is appropriate; (2) the individual does not oppose being served in the community; and (3) the placement is a reasonable accommodation when balanced with the needs of others with mental disabilities.15
That qualified “yes” was a victory, but not a complete repudiation of keeping people warehoused and segregated in institutions, including being subject to subminimum wages. And who would speak for someone in an institution? Their parent and/or guardian? What if someone doesn’t speak and doesn’t have a loved one to speak for them? Isn’t it logical to assume then that any human being stuck inside an institution would prefer freedom to choose their food, clothes, home and friends?16
While Lois and Elaine, and for that matter the lawyers involved, may not have envisioned it, the outcome of the arguments before the Supreme Court would go on to be referenced as the “Brown v. Board of Education for disability rights,” especially in lawsuits pertaining to subminimum wages. In 2000 the Olmstead settlement agreement was signed. The agreement provided that the state of Georgia would guarantee the two women were provided community-based housing, training supports, and employment services. After hearing both Lois and Elaine speak, Judge Shoob said, “I was amazed. They were both so articulate. At a party after the hearing, they gave a talk about how it felt to take care of themselves and what a wonderful life they were leading. I went up on the podium and hugged each one of them. I’d never done that before.”17
Of course, there was still a great deal of work to be done, and healing was needed. For Lois, the start wasn’t exactly clear cut. At first, since she often sketched little girls in portraits, the team supporting her thought she might like hanging baby clothes at Target, but that was not her passion. Several people who knew Lois well helped her pick out and purchase high-quality art supplies, resources she had not had access to in the institutions. Her artwork was transformed. She preferred pastels and watercolors, sometimes just an ink pen. She created art for hours at a time, taking only small breaks between sessions. The members of her circle of support bought her pieces, and through word of mouth so did others. There were art shows in local galleries and pieces bought through the mail. In 2007 Lois received the Harriet Tubman Act of Courage Award, an aptly named honor for Lois’s fight to find freedom, purpose, and the opportunity to showcase her talents while making it possible for others to do the same. In 2011 she was invited to meet President Barack Obama and his family in the Oval Office where she presented the president with an original piece of her art.18 According to one person in attendance, she was thrilled, and on the way out, broke into singing the song “We are Family” by the group Sister Sledge.
In 2015, in an interview conducted by Lee Sanders, one of her support staff, Lois talked about meeting President Obama, how she and Elaine were the “first ones out,” and how she spends her time, with art, going out to eat, cooking grits and sausage in her home, and her love for others still trapped inside institutions.19
Elaine Wilson went on to find her voice presenting to advocacy groups. She was often photographed wearing pearl earrings with a matching necklace. While she was the less familiar woman in the Olmstead case, that did not stop her from doing her part to spread the word of her life experiences in and out of the institution, with and without suitable employment. She became a public speaker at conferences and “Disability Days at the Capitol.” She used PowerPoint presentations to highlight the differences before and after the Supreme Court heard her case. “She blossomed,” said her attorney Sue Jamieson. “She took an interest in cooking and church and her personal appearance. She developed a PowerPoint presentation that described her life. When I heard it, I was extremely moved. I had no idea that Elaine had acquired that level of sophistication. She had exploited her natural skills and abilities to a degree I would never have believed possible. It makes you wonder how many other people like Elaine are out there.”20 Jamieson’s astute observation points to the central misconception in how we evaluate and assess someone’s potential for employment and contribution inside the disability industrial complex. It’s a deception that keeps citizens duped. What are we missing out on by cordoning off people with disabilities from working in our country’s economic landscape? There are losses related to tax revenue, but much more important is the forfeiture of an array of human expressions, of unique insights, robust experiences, and diversity that our communities desperately need. We lose because we’ve been tricked to believe that so-called normality is the only economically beneficial commodity.
Elaine died on December 4th, 2010. According to records she had been admitted thirty-six times into institutions during her life. Elaine fought for and obtained the right to live her life the way she felt best suited her; she used her experiences as both a means to employment and to help change a severely broken system, even if she lived only a handful of years after winning her right to do so. Ironically, the institution that she and Lois left (Georgia Regional Hospital–Atlanta) would be sued under the same ADA integration mandate that had propelled their case to the Supreme Court. Among other abuses, the DOJ asserted that the institution did not protect its patients from harm and used restraints and seclusions in a manner not consistent with appropriate standards. Other areas of concern cited were nutrition, healthcare, and physical therapy, all denied to the very people whom the state deemed must be institutionalized.
In 2019 disability advocacy organizations across America celebrated the twenty-year anniversary of the Supreme Court decision that Lois, Elaine, and Sue had initiated. A slogan was adopted in their honor: “I am Olmstead!” A strand of StoryCorp recordings exists of people who have been impacted and saved by the landmark court case, with video recordings and writings on the intersection of civil and disability rights.21 And the Olmstead precedent was the partial basis for sheltered-workshop lawsuits in Oregon, Rhode Island, and elsewhere.
It’s instructive to look at the work of advocates for ending sheltered work and subminimum wages before Olmstead (1999) and even before the ADA (1990). Like other civil-rights movements, this is not a narrative arc that starts and ends with legislation, court decisions, or class action lawsuits; instead, it is a mixture of those elements with a specific person’s devotion to justice and fair treatment, often at their own personal and professional risk. For a full picture of the ongoing battle to end subminimum wages, we need to consider those who read and learned from Burton Blatt, Wolf Wolfensberger, and others, and who believed that people with disabilities, specifically those considered intellectually and developmentally disabled, could learn. Recall Blatt’s research and writings regarding those stored away in institutions as being “educable and trainable.” In a very real sense, the early adopters of these sets of beliefs were on a track toward a head-on collision with the parties that believed people with disabilities needed special places to live and work, including special wage provisions. Those entities would enshrine their efforts to keep people segregated and exploited in supposed benevolence, while there was plenty of money involved. What would happen to the disability industrial complex if it was discovered that subminimum wages were the linchpin that held together a faulty and dangerous set of practices?