Although the law was not a full success, the CMHA was nevertheless a part of the larger movement and process that came to be known as deinstitutionalization. Deinstitutionalization was, first, the dramatic downsizing and closure of the large institutions, mainly the state hospitals, that had been housing patients with mental disorders for 100 years. The second half of this process was, or should have been, moving those same people into communities where they could receive care, support, housing—all the things they needed to survive and thrive outside of institutions. On the second front, deinstitutionalization was, at least in part, a disappointment.

As state hospitals across the country reduced their bed space, many people were discharged into their communities, including people who likely never had a significant reason to be hospitalized and people who experienced serious mental illness and significant disabilities. In 1955, there were around 550,000 patients with mental disorders institutionalized at public hospitals. Twenty years later, after the process of deinstitutionalization was well underway, the number was down to 200,000. By 2017, there were less than 40,000 patients in state hospitals. Based on the straight numbers, but especially in light of the significant U.S. population increase during these decades, the percentage of people hospitalized for mental disorders had plummeted (Substance Abuse and Mental Health Services Administration [SAMHSA], 2019).

As a social movement, and in its best light, deinstitutionalization marked the beginning of treating people with mental disorders as something more than patients or problems to hide away. People who had been confined against their wishes for lengthy periods emerged as people and community members. With medications, treatment, and other supports available outside of institutions, these people finally had the opportunity to live in their own homes and communities. Inherent in this change was the concern that it would cause people to suffer, but the opportunity for growth and independence made that risk worthwhile. Allowing people with mental disorders to seek lives in the community permitted them the dignity of risk—that is, the ability to potentially fail that accompanies an opportunity for growth. The concept of dignity of risk was first introduced by scholars in the 1970s and 1980s, but it has become a central tenet of self-advocates who continue today to argue that many forms of perceived “protection” place unacceptable limits on the lives of people with disabilities. The concept and importance of dignity of risk are explained by a self-advocate in the required video linked here (figure 1.15).

https://www.youtube.com/watch?v=LUka52lKtdw

Deinstitutionalization was not just a medical development or a legal maneuver. It was also part of a larger change in thinking that was pushed forward by the budding disability rights movement taking place in the mid-1900s in America. The disability rights movement was a broad push toward securing equal rights and opportunities for people who experience disabilities. Disability advocates saw other groups, like people of color and women, asserting their rights to fair treatment under the law, and they realized that people with disabilities also needed to claim their rights to participate in society. Groups such as disabled veterans and polio survivors were visible and often sympathetic leaders in this movement, as were parents of disabled children fighting for access to educational opportunities (Anti-Defamation League, 2017).

As part of the disability rights movement, there was increasing discomfort with the previously accepted marginal role of people with disabilities and mental disorders in society. Activists claimed that people with disabilities had rights as free human beings and that barriers would not be tolerated. These activists argued that they were entitled to live in accessible communities and with a degree of autonomy. All of this applied to people with mental disorders as well.

The disability rights movement was first organized and led primarily by people with physical disabilities. People with psychiatric disabilities or intellectual disabilities, and people of color with any disabilities, were less socially favored and often excluded from the mainstream early disability rights movement (Erkulwater, 2018). The disability rights movement was diverse in some ways—bringing together people from all walks of life, children and adults, veterans and hippies—but it struggled to fully integrate all the voices that would have increased its power and traction. According to some, this remains true to the present day, and the reasons are not always clear. One scholar who studies this issue has suggested that comparisons of suffering are harmful to group cohesion and to people of color who need their experiences to be seen fully:

White activists with disabilities sometimes argued that Blacks had to sit at the back of the bus, but the disabled couldn’t even get on the bus. That argument erases Black people with disabilities, whose exclusion is the result of both racism and ableism. When advocating for human rights, it’s important to recognize that our movements include people of marginalized identities, and there is value in centering those experiences and perspectives (Erkulwater, 2022).

SPOTLIGHT: Women Who Shaped the Disability Rights Movement

As discussed in the main text of this chapter, and in more depth in Chapter 3, the disability rights movement was instrumental to the deinstitutionalization process for people with mental disorders. Despite the many barriers facing female advocates—who due to their gender were prevented from exercising some of the most basic acts of independence well into the modern day—numerous women distinguished themselves as disability advocates, even as they contended with additional barriers created by race and disability.

• Bessie Virginia Blount (1914–2009) was born in Hickory, Virginia (figure 1.16). As a child of free Black people, she was sent to a very small segregated school that only taught through sixth grade. She had no opportunities to further her education until she was accepted to Union Junior College in Cranford, New Jersey. She studied nursing and later became a licensed physiotherapist. During World War II, Blount volunteered at military hospitals and realized that helping those with disabilities was her passion. She is credited with developing early forms of assistive technology—including self-feeding tools for people who had lost limbs, allowing them the power and dignity of controlling and managing their own intake (Lemelson-MIT, n.d.).
• Johnnie Lacy (1937–2010) was born in racially segregated Huttig, Arkansas, but moved to California when she was young (figure 1.17). At the age of 19, Lacy contracted polio, which left her paralyzed. After being treated in a rehabilitation facility, she was able to go to college and earn a degree, though she was forced to fight to gain entrance to school and was denied full participation. Lacy eventually helped found the influential Center for Independent Living in Berkeley and later served as the executive director of Community Resources for Independent Living in Hayward, California, from 1981 to 1994. Lacy’s struggles illustrate the intersectional impacts of racism, sexism, and disability, and they show the importance of her advocacy and accomplishments (The Center for Learner Equity, 2021).

• Judith Heumann (1947–2022) was diagnosed with polio at just 18 months old (figure 1.18). Initially denied entrance to public school, it wasn’t until fourth grade that Judy was able to attend a school for disabled children. Later, while attending Long Island University, Heumann became active in increasing the rights of people with disabilities. She organized rallies and protests. After college, she continued her work in activism and politics. A highlight of her work occurred in 1977 when she staged a sit-in protesting the U.S. Secretary of Health, Education, and Welfare’s refusal to implement Section 504 of the Rehabilitation Act of 1973, which protected civil rights for people with disabilities (discussed in more detail in Chapter 3). To this day, the Section 504 sit-in, lasting 28 days, is the longest-ever sit-in at a federal building (Heumann & Joiner, 2021).

Licenses and Attributions for Deinstitutionalization and Disability Rights

Open Content, Original

“Deinstitutionalization and Disability Rights” by Anne Nichol is licensed under CC BY 4.0.

Open Content, Shared Previously

“SPOTLIGHT: Women Who Shaped the Disability Rights Movement” by Monica McKirdy and modified by Anne Nichol is licensed under CC BY 4.0.

Figure 1.18. Photograph of Judy Heumann by Taylordw is licensed under CC BY 4.0.

All Rights Reserved Content

Figure 1.15. Dignity of Risk by UVM Center on Disability and Community Inclusion is licensed under the Standard YouTube License.

Figure 1.16. Photograph of Bessie Blount from blackpast.org is included under fair use.

Figure 1.17. Photograph of Johnnie Lacy from The Center for Learning Equity is included under fair use.