An Introduction to Disability Studies

The Freak Show business was incredibly popular at this time in the United States. People from all over went to gawk and stare at people they deemed freaks.

“They came to be educated and entertained, titillated and repulsed… to have their ideas of normal and abnormal, superior and inferior… confirmed and strengthened”

These “freaks” were usually disabled, had visible differences or were people of color. The business model of freak shows relied on ableism and racism in order to make a profit. People of color and people with developmental disabilities were thought to represent an earlier developmental state of humans.

Working in the industry was one of the few jobs that people with disabilities could get, and some of them were even sold by their family members in order for economic survival.

The medical model of disability did not exist during this time, so the performers were seen as extraordinary creatures. As such, the performers flaunted their disabilities instead of trying to overcome them. However, the decline of freak shows coincided with the emergence of the medical model of disability, where disabled people were no longer looked at with wonder, but instead with pity and pathology.

In the 1800s, the concept of normalcy was being applied to bodies through the branch of statistics. Eugenicist statisticians used bell-curves to measure human characteristics to find norms, and thus created ideas of normal and abnormal bodies.

The Darwinian theory of evolution was used to categorize disabled bodies as evolutionary defective, and eugenic ideas called for their elimination. Defective people included the physically defective, feebleminded, criminals, poor and more.

Mendelian theory was used to claim that these defective traits were hereditary and pedigrees were used to determine the medical, moral and sexual histories of each family in order to determine who should be forcibly sterilized. Many states passed these forced sterilization laws for the classes of people seen as inadequate–the vast majority being people with disabilities.

The Progressive Movement, starting in the 1890s, put focus on promoting education, science and social institutions to solve society's problems. As such, the colony movement was born to house and care for disabled individuals. However, it later adopted ideas of eugenics, aiming to keep inadequate people separate from society. In order to keep American society optimal and fit, they perpetuated forced sterilizations.

The Disability Rights Movement set out to establish basic rights that would prevent the discrimination and marginalization of people with disabilities. It has a long and detailed history, with examples of activism dating back to the 1800s, aiming to establish policies and practices that would secure the rights of people with disabilities. The following timeline consist of only a few of the many notable events throughout this battle:

Disability justice is a new framework of understanding disability that simultaneously builds off of and moves away from The Disability Rights Movement.

The Disability Rights Movement set out to establish civil rights for people with disabilities, however, it was carried out with some limitations:

1. The only identity of focus was disability, excluding intersectional identities involving race, gender, sexuality, age, immigration status, religion and more.
2. The movement's leadership was grounded in white experiences, and privilege was never addressed
3. The focus of the movement was primarily on individuals with mobility impairments

As such, the Disability Justice framework is a new way of understanding disability that centers intersectionality and other systems that perpetuate oppression. This way of thinking was developed in 2005 by Patty Berne, Mia Mingus and Stacey Milbern–all queer, disabled women of color.  Key ideas  to understanding disability justice include:

1. "All bodies are unique and essential"
2. "All bodies have strengths and needs that must be met"
3. "We are powerful, not despite the complexities of our bodies, but because of them"
4. "All bodies are confined by ability, race, gender, sexuality, class, nation state, religion, and more, and we cannot separate them"

In order to carry out these ideals, the 10 principles of disability justice were established:

10 PRINCIPLES OF DISABILITY JUSTICE

• INTERSECTIONALITY “We do not live single issue lives” –Audre Lorde. Ableism, coupled with white supremacy, supported by capitalism, underscored by heteropatriarchy, has rendered the vast majority of the world “invalid.”

• LEADERSHIP OF THOSE MOST IMPACTED “We are led by those who most know these systems.” –Aurora Levins Morales

• ANTI-CAPITALIST POLITIC In an economy that sees land and humans as components of profit, we are anti-capitalist by the nature of having non-conforming body/minds.

• COMMITMENT TO CROSS-MOVEMENT ORGANIZING Shifting how social justice movements understand disability and contextualize ableism, disability justice lends itself to politics of alliance.

• RECOGNIZING WHOLENESS People have inherent worth outside of commodity relations and capitalist notions of productivity. Each person is full of history and life experience.

• SUSTAINABILITY We pace ourselves, individually and collectively, to be sustained long term. Our embodied experiences guide us toward ongoing justice and liberation.

• COMMITMENT TO CROSS-DISABILITY SOLIDARITY We honor the insights and participation of all of our community members, knowing that isolation undermines collective liberation.

• INTERDEPENDENCE We meet each others’ needs as we build toward liberation, knowing that state solutions inevitably extend into further control over lives.

• COLLECTIVE ACCESS As brown, black and queer-bodied disabled people we bring flexibility and creative nuance that go beyond able-bodied/minded normativity, to be in community with each other.

• COLLECTIVE LIBERATION No body or mind can be left behind – only moving together can we accomplish the revolution we require.

It is important to differentiate between impairment and disability because it shifts the blame of the limitations experienced in society away from the individual person and onto the larger structures in place. The narrative is no longer about "fixing" or curing the disabled body, but rather aims to remove systemic barriers and emphasize the need for accommodations.

Disability must be understood as a complex concept that shapes identity, social aspects, politics and ways of being in the world. Understanding disability as just the impairment is incredibly limiting and hinders the progress towards structural change.

As such, disability studies takes into account not only the physical or cognitive differences of disabled individuals, but also how they operate in society given pre-conceived notions of normal and abnormal. In other words, there is a shift away from a pathological and biomedical understanding of disability, towards a lens that takes into account social, political and cultural aspects.

Medical Definition of Disability

Thinking of disability through the medical definition fosters separation.

When we think about disability in terms of the impairment, society begins to group disabled individuals based on their differences or diagnoses. Not only does this create disunity among disabled people but it also frames disability as a medical issue where the solution is to treat it. However, looking at disability through a disability studies lens offers a common identity and culture that unites people based on a common experience.

Normal vs Abnormal

When people describe non-disabled people as normal, it creates a stark difference and hierarchy between disabled and non-disabled people.

It implies social position, self worth, acceptability and societal attitudes towards each group. It perpetuates concepts previously established by eugenic statisticians.

Overcoming Disability

The implications of "overcoming" a disability are that the disabled individual is viewed as competent, successful and has risen above societal expectations. They are no longer limited by their disability.

This pushes disabled people to exert themselves to assimilate into an un-accommodating world rather than putting the responsibility on the world to be more accommodating.

"I don't think of you as disabled"

Such a phrase is commonly said to people with disabilities in a misguided effort to make them feel less "othered" in society.

However, this erases the unique complexity of a disabled identity and also implies that such a label is undesirable.

The medicalization of disability, where the focus is on the impairment rather than the rich identity of disability, creates a misconception that the quality of life of disabled individuals is inherently bad. This is held by the common public as well as medical providers.

This idea can have detrimental consequences in the healthcare system that can harm the well-being of disabled individuals.

Discrimination in Triage

Triage protocols determine how scarce, critical-care resources are allocated during emergency situations.

Dominant views are that limited resources should be allocated in order to:

1) Save the most lives

2) Maximize improvements in post-treatment length of life

However, this results in discriminating against individuals who need more resources, a lot of which include disabled people. This means that maximizing the number of people saved would result in selecting against disabled people.

Discrimination in the COVID-19 Pandemic

Disabled lives were also seen as more expendable during the context of the COVID-19 pandemic. Public service announcements attempted to reassure the public that it was only the chronically ill and old that were at risk of death. In some places, like Italy, they weren't attempting to save the lives of the sick and old with COVID-19 because it would take more resources.

Discrimination in abortion and prenatal screening

The belief that disabled people have inherently lower quality lives can be reflected in ideas of abortion and prenatal screening.

"Prenatal screening results can turn a 'wanted baby' into an 'unwanted fetus'"

One of the most commonly socially accepted reasons for performing an abortion is that the baby has a disability. However, there is a stark lack of education given to mothers about the nature of the disability, resources available to navigate it, or even exposure to someone who has the disability.

Proponents for selecting against disabled babies make claims that planning the birth of a disabled child could potentially be considered child abuse based on the false assumption that a poor quality of life is imposed on them.

Cure ideology

The dominant biomedical view of disability pushes the idea of cure as the gold standard for alleviating disability.

However, this centers the damage entirely within the body and mind of the disabled individual without taking into consideration the effects of the environment. The fault is not seen in access to education, employment, accessibility, etc., but instead paints the impairment as the only thing that needs to be fixed. The idea of cure also assumes that there is an original, "normal" state of being that must be returned to, instead of viewing the disabled body as a valid way of existing.

Ideas of cure continue to reinforce ideas of normal and abnormal.

The ADA, in part, mandates the removal of physical barriers that would prevent disabled people from equal access to spaces. However, despite this federal requirement, a lot of spaces still remain inaccessible. For example, it is estimated that 65% of curb ramps and 48% of sidewalks are not accessible for disabled people. Facts like these are troubling, considering the already intense fight for laws like this to be established. As we push for ADA compliance, there are some already established examples of accessibility that we can point to as models for what accessibility can look like. Designing accessible spaces should go beyond simple functionality but also incorporate elements that can enhance the experience.

Deaf Space

One example of thoughtful accessibility is in the design of Gaullaudet University in Washington, DC. It's a school for the deaf that was specifically designed to foster deaf culture and the way deaf people use space.

• Group spaces are designed in a U shape to facilitate visual communication
• Walkways are wider so two people can have a conversation side by side
• Use of mirrors to help give people an idea of what's happening behind them
• Large visual range to foster communication

Autism Friendly Housing

Sweetwater Spectrum is a residential community for adults with autism or other developmental disabilities. The design of this community based housing kept in mind the stimulus sensitivity and social difficulties that individuals with autism often have. Accommodations include:

• Sound-absorbing materials
• No fluorescent or direct lighting
• Neutral colors
• High, acoustic ceilings
• Facilities, activities and community settings to facilitate friendship building
• Choice in the degree of community engagement
  • Room
  • House
  • Community enrichment events
  • Activities in the nearby town

The disability community is filled with vibrant, creative and powerful art.

Disability culture is a process in which disability focused environments can acknowledge individual bodies and needs, creating a space of acceptance where people can come as they are. This is especially prevalent in spaces of dance or performance, where disabled people can experience their bodies, and art, in a way thats individual and inclusive to them.

Alice Sheppard, a choreographer and dancer who uses a wheelchair, embodies this notion.

Alice moves from the wheelchair to the floor, back to the wheelchair or even completely turns her chair upside down. She listens and learns from her body, occupying the space in an individualized way. She emphasizes that she dances not because its therapeutic or because it feels good to move despite her impairment, but she dances simply because she enjoys the power and freedom it provides.

In this piece, her performance transforms the idea of a ramp from a bland, metallic, strictly functional object into something that is beautiful and enticing. Alice emphasizes that accessibility shouldn't strictly be about function, a concept that can be applied beyond the dance floor.

Alice Sheppard has also collaborated with a prominent artist and writer in disability culture, Riva Lehrer.

Riva's work is usually centered around bodies of those that have long been stigmatized or or "othered" in society. Ideas of physical identity, societal perception and personal narratives are key in her work.

A part of Riva's process is to make sure that there is an equal power dynamic between artists and subject. In order to do this she leaves her house for one hour while the subject has full control over her house as well as any additions to the piece. Alice Sheppard, in this piece, added the extra limbs, wheelchair riders and hands touching her body. Overall, the work is entirely intimate and incredibly individual, with the subject yielding incredible control over how they are depicted.

It is clear that disability art and culture is engrained with accepting, celebrating and accommodating every body and mind for where they're at while simultaneously being able to deliver art that is incredibly personal and moving.

It is incredibly important to understand disability beyond mere medicalization, instead we should expand our view to encompass the rich, complex experiences and identities that form the disability community. There is a dire need for institutions and the broader community to shift from a focus on ‘fixing’ individuals to removing systemic barriers and fostering inclusivity. The historical context of disability, from the era of freak shows to the Disability Rights and Justice Movements, illustrates the evolving perceptions and treatment of disabled individuals. Overall, it's crucial that we embrace the diversity of bodies and minds, advocating for accessibility, recognition, and the celebration of disability art and culture as integral components of a just and equitable society.