The Story of Disability Justice

“A system of assigning value to people's bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness. These constructed ideas are deeply rooted in eugenics, anti-Blackness, misogyny, colonialism, imperialism, and capitalism. This systemic oppression that leads to people and society determining people's value based on their culture, age, language, appearance, religion, birth or living place, ‘health/wellness,’ and/or their ability to satisfactorily re/produce, ‘excel’ and ‘behave.’ You do not have to be disabled to experience ableism.“

• A definition of ableism by TL Lewis

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Ending violence

As we tell the story of the ableist, anti-Black, misogynistic, xenophobic violence that must be eradicated for healing and transformation to take place, we remember that every word written here is a story about real people, both our ancestors and those currently alive. We seek to honor their stories and not to objectify their experiences as though they are just information. For disabled and other marginalized people, this story has never been neutral. We honor and remember the lives of those who are represented on this page.

Our timeline of the Medical Industrial Complex (MIC), from the beginning to the present moment, is a story of ableism and disability. It is a story of the violence of these systems and how they operate in the world. There would be no such thing as the Medical Industrial Complex if ableism did not exist. We created this timeline aligned with the intention of transforming and abolishing the ideas and systems that perpetuate false beliefs that:

• There is such a thing as a “normal” body or mind;
• People with disabled bodies and minds are considered fundamentally inferior to able-bodied people, incapable of a credible life, or not worthy of living; 
• Disabled bodies or minds labeled as “not normal” are an abomination, a burden, and must be “cured” or “fixed”;
• Disabled bodies or minds are considered “deviant,” “dangerous,” “vile,” and in need of control and/or eradication;
• And state practices and policies should exist to isolate, devalue, police, criminalize, punish, or destroy disabled people.

In the United States, “normal” is most often code for Christian, “pure,” white/light skinned, masculine-presenting, heterosexual, gender-conforming, upper class or elite, and able-bodied. Normal, within this context, also applies to the dominant cultural idea of how someone should speak, move, use their body, express desire or pleasure, and communicate. This is not a harmless belief system. It is inextricably linked to the idea that lives of value reside only within bodies and minds that are able to produce labor, children, or products, in order to expand the profits and power of people who are white, male, able-bodied, and hearing. (By naming those who are hearing, we recognize and honor that deafness is a culture, not a disability).

This economy of bodies reinforces the devaluing of the lives of people with disabilities, as it assigns value according to a person's capacity to produce. Within this system, disabled bodies are automatically de-valued, as capitalism does not attribute worth outside of production. In this economy of bodies, people with disabilities are at the disposal of, and intended to produce for, able-bodied people; not for, or within, their own autonomy.  

This violence has been emerging for hundreds of generations. Some of this is covered within another story, The Story of the Colonizer Wound. 

The MIC evolved through the leveraging of anti-Black racism, ableism, misogyny, imperialism,  and capitalism to control racialized, gendered, sexualized bodies, and to ensure the continued consolidation of power and control by wealthy, white, able-bodied men and women. It is the result of shifting the focus of care away from people’s individual and collective sense of autonomy, beauty, and aliveness, towards coercing people to function within a capitalist economic system, while disappearing and isolating people whose bodies are perceived as worthless. 

The values of the Medical Industrial Complex are rooted in the history of enslavement and imperialism, and their current iterations. This system thrives off of more than 500 years of violence that has resulted in a cultural, political, and economic system that normalizes the exploitation and control of people’s bodies, and the disavowal and destruction of those who resist or don't comply with the status quo. 

While everything about this timeline is about ableism, the shape of ableism has, implicitly and explicitly, shifted and changed over generations. So too has the resistance to ableism shifted and changed shape over generations. 

There are many different frameworks for talking about how concepts of ability and disability have evolved. We are grateful for what we have learned from, and with, the Disability Project at the Transgender Law Center, who helped us understand the evolution of the timeline alongside the evolution of these disability frameworks. Shades of Noir, a journal out of England, names 21 different frameworks or models for understanding disability. Across multiple generations, different ways of justifying and asserting an ableist idea of “normal” have emerged in response to social, scientific, and cultural understandings of the body, culture, and collective responsibility for care. The Healing Histories Project, as an abolitionist project, understands that until we uproot these supremacist ideologies, they will keep shape-shifting so that ableism remains. The problem is not with the many different ways that life shows up, but with the assumption that all life must conform to a particular standard to be of value.

We focus on the Eurochristian lineage of ableism in the United States, because it shows how ableism is inherently eugenic, racist, misogynist, capitalist, and colonialist. Having said this, we recognize that these models might not completely fit every community. 

The first framework we're going to discuss is a moral or religious model, the root of which is the idea that disability is an “act of God.” For most of the evolution of ableism that shaped the MIC, this idea has existed. It emerged with, and developed alongside, European Christianity as a political and cultural force. The moral/religious model offers two sides of the same coin: disability as punishment for sinfulness, or disability as the will of God, where God chooses certain individuals to bear the burden of disability in order to absolve humanity of its sins. A person's disability might be perceived as punishment for their lack of faith, their sins, or the sins of their ancestors, (particularly their mothers) or as something they must endure so that they, like Jesus, can suffer for the good of the rest of humanity. This model teaches that with the right prayerful actions, “cure” is possible. If someone cannot be cured, their continued disability is seen as a result of lack of faith on their part. The way this is framed is impacted by a person’s race, type of disability, gender, sexual behavior, sexuality, and more. While a white Christian child might be considered an innocent victim suffering for all of humanity, a Black woman, or someone who is Two Spirit, will rarely be perceived as innocent and in need of protection and care. Instead, they are seen as a threat in need of containment and control. The perceived necessity for containment and control remains to this day, even after a shift away from the moral/religious model towards subsequent medical models. 

Today, the moral or religious model shows up most often in the form of “alternative” or “holistic” healing practitioners who profess that illness is only or primarily the result of a person not eating right, meditating enough, or getting enough exercise. This ideology perpetuates the belief that if people took care of themselves and divested from [fill in the blank: junk food, long work hours, stress, etc.] then they would not get sick. This belief uses ableism to hold the individual accountable for everything they experience, assuming a kind of control and agency that would allow them to make choices that would lead to their “cure.” There is no focus, within this belief, on the broader context of the harmful, systemic, intentional, and abusive conditions that many live with, including lack of quality housing, food, care, employment, and safety. 

This belief in the curative power of individual choices was especially illuminated during the COVID-19 pandemic. One of the tensions within anti-vaccination ideology asserted “right-living” as the practice that would strengthen the immune system against COVID-19. This framework is highly individualized and binary, asserting a right versus wrong way of taking action towards cure,wellness, or health. Although this belief system predates what we recognize as Western medicine, it still manages to find its way into the structure of certain care programs and strategies today.

As Western medicine emerged, so did the medical model of disability, which is the idea that disability is a disease that, with the right treatment, can, and should, be cured. This framework still focuses on addressing isolated individual experience, but within the context of science rather than God. In this model, the body is like a machine or a collection of parts that, when “broken” or “not working right," can be fixed. With the right services, technology, or treatment, the “broken” body can be cured and “rehabilitated back into society.” In this model, disability is inherently wrong and needs to be fixed. Medical research focuses on finding the right kinds of fixes while retaining control of how, when, and if they are available — to whom, and at what cost. The science of eugenics combined this concept of “fixing what is broken” with a belief that some people’s genetic make-up renders them inherently unfit. These people are viewed as a threat to the genetic purity that eugenics pursues, and they must be prevented from reproducing so that their DNA can be removed from the gene pool. In this way, medicine is weaponized to control people and collude with violent state policies and laws. At its most benign, eugenic thinking views people with physical and mental disabilities as needing to be “fixed” with the goal of creating an "able-bodied" society. 

Population control, which is a part of eugenics, shows up in many ways, including in the belief that Black people and other People of Color’s fertility is the root cause of environmental degradation. Though the true root cause of natural resource depletion is war. A recent lawsuit filed by the Arizona Attorney General, Mark Brnovich, against the Department of Homeland Security names the Biden administration as responsible for climate change by “softening” on immigration and therefore allowing an increase in demand for housing, hospitals, schools; the purchase of goods; and the use of public parks and other natural areas. The lawsuit blames an increase in immigration for pollution, a rise in carbon dioxide, and the release of greenhouse gasses. This ignores the responsibility of corporations, militaries, and wealthy individuals for the vast majority of environmental issues.

The strategies of population control have changed over time, including through the practices of community, and state-led, programs for forced sterilization. Population control also includes the rise in pre-implantation genetic de-selection technology that is used to “breed out” various forms of disability. Other contemporary examples of population control include normalizing amniocentesis as part of the process of prenatal care, so that informed adults can terminate pregnancies if signs of disability show up. For example, prenatal testing has been used to halve the number of children born with Down Syndrome in the United States. 

Within the medical model of disability, the physician is understood to play God, and is tasked with “fixing” or “saving” people with disabilities. The medical model builds on the moral/religious model by continuing to assert a binary of innocence versus guilt, as disabilities are assessed based on their capacity to change or be cured. “Good” people with disabilities do everything they can to fit within an ableist culture. “Bad” people with disabilities understand that their lives are valid and do not see themselves as needing to be fixed. This tension is evident in the way that Deafness and Deaf culture is not respected by the medical establishment, which focuses on developing technologies that replace Deafness with some capacity to hear as the necessary goal for all Deaf people. 

The idea that disability is a weakness shows up in conversations regarding “quality of life” for people living with disabilities. Jerika Bolen, a Black teenager in Wisconsin, was living with muscular dystrophy. As her illness progressed, Bolen decided that she wanted to be taken off the ventilator and medications supporting her life. She explained her choice as a desire to end her personal pain, as well as the grief she felt her life had caused her family. During this time, many adults living with disabilities, including muscular dystrophy, reached out to Jerika; they shared the value and meaning in their lives with her, attempting to offer a different perspective on the idea of “quality of life”. They shared the truth of how much pleasure was available to her. They asked Jerika to please consider other options, and not limit herself to the narrative that to be alive with a disability is to be a “burden.” Jerika's choice raised complex conversations within broader communities, including within the disability community. Carrie Anne Lucas with Disabled Parents Rights reflected: “Wisconsin law is clear that unless a child is in a persistent vegetative state, parents do not have the ability to withdraw care and neither do children have the legal capacity to make those decisions for themselves. Therefore, we believe the plans she’s discussed in the media are a violation of Wisconsin law and we believe that children, regardless of the severity of their disability, are entitled to equal protection under the law.” Other disability rights organizations made similar statements. 

Coming into the present moment

Embedded in all of these examples is the idea that some lives, and some kinds of living, are inherently worth more than others. These models propose change or “cure” as the goal and focus on a single individual life as either good or bad, innocent or guilty, curable or not. 

There is also a co-existing social awareness that looks outside of an individual life and considers the circumstances surrounding that life. Throughout the period described above, it is likely that there were people who did not assume cure and control as the primary ways to “deal with” disabilities. People were loved and remembered and valued for their inherent worth. But those are not the stories that are most often carried forward, nor are they the beliefs that have shaped our systems. Similarly, there has always been resistance; there have always been people who fought back, who claimed their lives as valuable. Those too are rarely the stories that are carried forward, and their destruction has been part of what has entrenched systems of cure and control.

In the 20th century, a social model of disability, the idea that disability is a social construct, began to move beyond personal belief and into shaping systems and structures. This framework recognizes that there is no such thing as a disability, just as there is no such thing as race or gender. These are culturally-created categories that are used to assign values and meaning to individual lives. The social model recognizes that because of ableism, people with disabilities experience violence, discrimination and harm. It recognizes that while the category of disability is socially created, the difficulty  of living with a disability within ableist systems is not.

This movement towards recognizing social context, and the ways that cultural beliefs shape experiences, brings us to the present moment. It recognizes the inherent value of a person, and includes that person’s right to make meaning out of their own lives, on their own terms. Notice that sentence, and feel what it does to you to read those words.

There are other frameworks for understanding disability, including understanding disability as an identity, as a human rights issue, as a locus of culture, and as an experience of embodiment. Each of these frameworks sits within this social model as they continue to focus on the sovereignty of a person, or community, to make meaning in the way that makes sense for them.

In the early 1800s, some of the first schools for people who were Deaf, and people who were blind, were founded. These schools fought for  the right to an accessible education, with American Sign Language and/or Braille as the language of education. As eugenic policies grew across the 19th century, resistance to eugenic thinking also grew. The League for the Physically Handicapped was formed in the 1930s as a response to the Great Depression. Responding to the national focus on building a social safety net to support the common good, the League reflected a growing mix of organizations, laws, and policies that focused on providing accommodations and care for people with disabilities. There was a particular focus on supporting people with disabilities to gain access to work. Some of these programs were shaped by the medical model of disability, some were organized with a charity ethic, and some were shaped by the social model. Many had elements of all three in their structures.

During the 1960s, as general awareness of civil and social rights shaped movements, self-advocacy organizing began to take over, moving away from an “organizing for” to “organizing by” model, meaning organizing led by people with lived experience. Organizations like ADAPT, the Rolling Quads, and the Center for Independent Living worked to center the experience of people with disabilities in organizing for accommodations, inclusion, and overall justice. The Disability Rights movement was born in this period as a movement in solidarity with other civil rights-based movements. Disability Rights organizing, using a range of strategies, eventually led to the passage of the Americans with Disabilities Act (ADA) in 1990. The ADA names and prohibits discrimination against people living with disabilities in the areas of employment, transportation, public housing, communications, and access to federal, state, and local programs and services. It is organized around inclusion and accessibility, it provides funding, and sets standards for everything from building codes, to public events, and more. In disability communities, the Americans with Disabilities Act is considered the starting point for organizing, not the end point.

Creating the conditions to shift how histories are still held in culture 

A disability rights ethic, as reflected in the Americans with Disabilities Act, largely focuses on making everyday life more accessible to people with disabilities. It does not necessarily challenge the belief systems and practices that center able-bodied life and experience as the goal that people with disabilities should aspire to. It also does not challenge the intersectional weave of racism, colonization, trans/homophobia, heterosexism, poverty, and Christian supremacy that uses ableism to justify its systems and expressions. 

Disability Justice emerged as a framework in 2009. It has significantly informed the creation of this timeline. Patty Berne, Sebastian Margaret, and Mia Mingus gathered for a cross-disability hangout in Patty Bernes' (the founder of Sins Invalid) garden in Berkeley, California. That afternoon they shared different experiences that they encountered in navigating and resisting ableism across their own lines of race, ethnicity, gender, queerness, migration, class, and parenting. The evolution of Disability Justice principles were then created in partnership with other key disability activists; Leroy Moore, Stacey Park-Milbern, Leah Lakshmi Piepzna-Samarasinha, Akemi Nishida, and Eli Clare, along with countless others. 

Disability Justice takes an intersectional approach, recognizing that a person’s race, ethnicity, gender, class, and so on, directly impacts their experience of disability.  While providing accessible accommodations is part of the work, Disability Justice recognizes that ableism does not change unless the intersections of structural and social power, and oppression, are addressed. The principles of Disability Justice named during that first garden hangout include: intersectionality; the leadership of those most impacted; anti-capitalist politics; cross-movement and cross-class solidarity; recognizing that people with disabilities are “whole” already and don’t need to be changed; sustainability, meaning that the pace of change must match the energy and capacity of those making the change; commitment to cross-disability solidarity; and interdependence, the understanding that our lives are inextricably connected and that we all need support, collective access, and collective liberation.

Disability Justice also recognizes the ways in which movements for social justice are themselves often rooted in ableism, applying the same ethics of productivity and sacrifice as a sign of strength, while a sustainable workload, taking breaks, or resting are considered a sign of weakness or lack of commitment to the work of social change. Disability Justice addresses the ways in which disability has been understood, primarily, through a white male and class-privileged lens. It names the violence of anti-Black racism, anti-Indigeneity, trans- and homophobia, misogyny, and other forms of supremacy as forces that create disability and illness. Disability Justice also illuminates the many Black, Indigenous and other leaders of color, queer and trans leaders, and others whose experience of living with a disability directly informed their liberatory work. This includes Harriet Tubman, Sojourner Truth, Audre Lorde and many others. 

As time moves on, more and more people are building upon this foundation, understanding the ways in which ableism is one of the primary obstacles to a world where respect and dignity belong in all forms of care, and where our collective lives assume the inherent value of each one of us, regardless of how we experience our life. Indigenous thinkers are weaving together Disability Justice with Indigenous justice, lifting up Indigenous resistance to the attacks on both land and people, and pushing Disability Justice frameworks to recognize the relationship between land and bodies as part of the wound that must be addressed.

Far Right racial capitalist thinking continues to treat living beings as objects to be assigned value and traded or disappeared, based upon their perceived worth. This approach shapes how seeds are shared as part of our collective inheritance or genetically modified to only reproduce on the command of the one who holds the patent. It shapes how each and every body is supported or not, in both struggle and strength, based on how that  body fits into the story of what has value. 

Changing these conditions is critical to stopping the violence, erasure, exploitation, and oppression of people with disabilities and to creating a future that welcomes and dignifies life in all its forms. 

 

 

Thank you to the Disability Project at the Transgender Law Center for their contributions to this story!