This article provides an overview of how the study of disability came to be including the ever-evolving field of Sociology of Disability in the United States. It explains the two main perspectives of disability and delves deeper into more nuanced paradigms. Finally, this article takes a closer look at disability rights movements that are relevant to our contemporary times.
History of Disability and Its Discourse
In the United States there is one in four people who lives with a disability. It is the largest minority group in America, and yet often misunderstood. The American History Museum states,”…one of the most ignored questions in history is: Why is disability seldom a part of the story?” (Disability History, 2015). The earlier stages of the field of Sociology does not include Disability either. In fact none of the Classical Social Theorists mentions disability in their work besides for one. Harriet Martineau was a lesser known social theorist who lived in the 1800s. Martineau who was deaf herself discussed disability in her writings; specifically she wrote “Letter to the Deaf” which includes insights on the challenges faced by Deaf people. Most sociologists paid little if any attention to the notion of Disability and hardly recognized disabled people as a community. It was only until the 1980s that disabled individuals were understood from the perspective of being a “minority”. The American Sociological Association would lump Disability under the umbrella of Medical Sociology until the year 2010 when it got its own category. Likewise, it has been fairly recent in history that higher education offers courses in Disability Studies, comparable to Gender Studies in which it draws from Sociology but ultimately it branches into its own interdisciplinary study. (Barnartt, 2017)
What Is Disability?
Let’s begin with the mainstream definition provided by the health organization, Center for Disease Control and work our way to understanding the complex social components of disability. The CDC defines disability as, “…any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).”(Disability and Health Overview, 2020).In other words, like many health organizations, the CDC focuses on the biological nature of disability such as an impairment, disorder, disease, illness or injury and the way this impacts the individual’s functioning. If disability seems as though it is simply a health concern and remains merely a biological phenomenon, how can we try to understand it sociologically? We can start with accepting that disability has a social component and explore how that is so. The social-cultural dimensions of disability are the elements that change across culture, geographic space and historical time. Some examples are: what society deems what is and isn’t a disability, the cultural meaning that influences how people in society treat those with disabilities, the stigma towards certain kinds of disabilities, how the disabled individual is perceived by others and oneself and the discrimination, oppressive approach and barriers to accessibility of resources that people with disabilities tend to face. While the official health and medical organizations point to the clinical and statistical data to argue that solely the impairments that hinders the quality of life for the individual, there are individuals with lived experiences who tell a different story. People with disabilities have fought for their basic human rights and for a more just, equitable and inclusive society. In this article, we will delve deeper into the two main paradigms of thinking how to define and qualify disability which are known as the Medical Model and the Social Model.
Medical Model Versus Social Model
The Medical Model points to the biological impairment as a cause of what reduces an individual’s quality of life. This impairment is seen as the pathology and therefore the solution would be to “cure” or “fix” this problem. Furthermore, the medical model is heavily centered around medical professionals as the experts who study the problem and prescribe treatment. Because this model has a tendency to focus on the opinions of outside forces such as parents, teachers, health care providers and other authority figures, the individual who is living with the disability may feel powerless and unheard in matters about their own mind, body and life. (Buder et al., 2021) At best, the Medical Model would motivate professionals to deliver best practices in treating the individual. At worst, the Medical Model can go down a dangerous path of overlapping with the Eugenics Movement.
The Social Model on the other hand distinguishes between “impairment” and “disability”. While the Social Model recognizes that a person may live with a physical, mental or sensory impairment, it embraces this as a natural phenomenon part of human diversity in which an equitable society would not only honor accommodations but also design the built environment and social, cultural political and economic spheres with inclusion in mind. This model shifts the way in which disability is talked about from a person with a problem to a person with a difference or an impairment who lives within a problematic built and social environment that in turn is “disabling” to and causes the people with the impairment to suffer. The Social Model points to how society not only creates a disabling environment in its design but also holds responsibility for perpetuating the disabling environment. Take an apartment building as an example. For a person with a physical impairment, there is an issue of needing an elevator if their apartment unit is not on the first floor; there is also the challenge of getting inside the apartment lobby if there is no ramp in place. Many apartment buildings may have one or two large steps to get into the lobby, heavy doors, narrow entrance ways etc and all these built structures make it difficult to simply enter and exit one’s home. If there is a ramp installed, this allows the person with the physical impairment to move around with a little more independence. In fact, a ramp would not only help those with physical impairments; children in strollers, senior citizens and anyone pushing a cart on wheels can all benefit from this. Yet, even making changes like this may only come after years of advocating or there may be a catch such as the ramp is installed in the back or side entrance where there are heavy doors that are difficult to use which is means the built structure is still not fully accessible. When we think of senior citizens “aging in place”, we think of designing a home in which aging naturally is possible. The doors are built from the beginning with aging in mind. This is important when we think about accessibility. The add-ons such as the ramp may help with old buildings but can be insufficient when society continues to build without equity, diversity, and inclusion in the designing stages. Likewise, imagine if everyone at school was taught sign language. That would mean that the deaf people would be able to participate more freely. The deaf person would not even be considered disabled as much and while accommodation may still be needed, it may not be as often or as intensely because the environment naturally includes them. The deaf individuals would be able to move around society and have better opportunity to actively participate. (Buder et al., 2021) It is important to have a variety of choices when it comes to accessibility so that a person who uses alternative modes of communicating, moving around etc can do what works for them in a given moment.
Understanding Ableism
While trying to understand what disability is and isn’t and the models to help conceptualize it, it is helpful to understand the term Ableism. Ableism is the prejudice or discrimination towards an individual or group based on one’s ability. Ableism can be seen on an institutional, interpersonal and internal level (ableism directed towards oneself). Ableism can range in forms such as hostile aggression on one end and on the other end benevolent ableism such as feeling sorry for the people with disabilities to to result in infantilizing and undermining the individual’s autonomy. Ableism can be ambivalent or a mix of benevolent and hostile ableism. Ableism can also be built into the systemic structure of society as well as ingrained in the cultural attitudes, beliefs and interactions. Examples of structural ableism is inaccessible built environment, discrimination within the education system, discrimination within the healthcare system and unequal employment opportunities. (Sullivan et al, 2021)
Feminist Theory and Disability Studies
Within the study of Feminist Theory as well as Critical Race Theory, there is the notion that social identities such as race, class, and gender are interconnected and an individual or group with overlapping identities may have a deeper and more complex disadvantage or privilege because of it. This concept is known as intersectionality (Intersectionality, 2020). Acknowledging that being a Black woman is a different lived experience than being a White woman or a Black man, is important because this as though it is its own category with its own set of experiences. In that light, there has been a call for Feminist Disability Studies such as stated in the article, “Women and Disability: Feminist Disability Studies.” which would recognize “that disability is always inextricably linked to other social markers, such as gender, race, sexuality, and social class”. Similarly, in the article “Towards a Feminist Theory of Disability, the author states, “We need a feminist theory of disability, both because 16 percent of women are disabled, and because the oppression of disabled people is closely linked to the cultural oppression of the body.” (Wendell, 1989) When similarities between Disability Studies and Feminism are acknowledged and studied as interconnected layers, space can be made to authentically explore these multiple layers of an individual’s social identity, giving a more complete picture of the human experience.
Disability Rights Through the Ages
Traditionally, the welfare for disabled people was centered around the voices of family members and caregivers. One cultural depiction of disability had been the image of a poor disabled person, perhaps the source of their disability was an illness or they were born with a sensory impairment. In this case, the poor disabled person would be at the mercy of kindness and charity of the local people in the village and religious leaders who say it is important to give to the needy. This does not mean that the voices of disabled people were heard nor does it mean they were treated equally. Sometimes religious leaders would say having a disability is the manifestation of punishment for sin. Other times, there was a notion that such an individual was on a greater spiritual level because their sins were being accounted for here on earth and therefore will be cleansed and go to Heaven. (Disability in the Middle Ages, 2022) At the other end is the image of a warrior or heroic figure who fought in battle and lost a limb or had acquired a sustaining injury. Such wounds to the body are often glorified and seen as noble and there may even be an emphasis to return to battle. (Moments In Disability History, 2022)
Over the years, schools were created for people with disabilities, although there was a focus on education services for those who are Deaf or Blind. This allowed for children to connect with others who have disabilities. However, this was a victory for people with only some types of disabilities and excluded others. (Moments In Disability History, 2022) As the Civil Rights Movement of the 60s took place, individuals across disabilities joined together in the struggle and have formed various movements for social change. The following are some of the movements led by Disability Rights Activists.
Nothing About Us Without Us
The phrase “Nothing About Us Without Us” is a slogan that was first used in the 1990s. Individuals with disabilities argued that no policy in society should be passed without their full and direct participation. It had been a long history of people with disabilities being subjected to others and assumed incompetence to have their voices heard. This is a way of people with disabilites taking back their power and saying yes, their bodies and minds may be different than the norm but that does not mean their own wishes, desires, needs should not be expressed and considered. After all, policies directly impact people with disabilities and including multiple diverse voices to inform decision making is the epitome of a democratic society. (Nothing About Us Without Us, 2022)
Self-Advocacy
Self-Advocacy goes hand in hand with the “Nothing About Us Without Us” slogan. Self Advocacy is the concept that the person with the disability, not only the caregiver, parent, teacher, health care provider, government official or anyone else but the very person who is living with the disability should have a voice in one’s own life matters and decisions. Some may argue that people with severe cognitive impairments or who are unable to independently verbally communicate should have a caregiver take over. However, Self-Advocacy proponents will say that even those individuals who may not be able to make all the decisions on their own should still be included in whatever they can do. In other words, when there is a collaborative partnership, the person with the disability is treated better; with more dignity and respect than if everything was determined for them. While doctors, teachers and therapists may be experts in their field of study, the person living with the disability is the expert of their own mind, body and lived experiences and that must be heard, valued and taken into consideration. (Self-Advocacy, 2022)
Neurodiversity Movement
The word “Neurodiversity” was coined by the sociologist Judy Singer in 1998. While biodiversity refers to the natural variation found in nature across a species, neurodiversity is the idea that the human brain has natural variations and all of which are to be embraced as part of the human condition. This can be an incredibly helpful way of framing neuro-developmental conditions such as intellectual impairments, learning disabilities, Attention Deficit Hyperactivity Disorder and Autism Spectrum Disorder. Rather than pathologizing and viewing these conditions as a deficient or inferior brain type, Neurodiversity advocates take a trait-based approach. This means that specific traits that cause harm to oneself or others are addressed whereas non-harmful human differences are respected. In this way, people with such conditions are not shamed for who they are and how their brain works. Neuro-normative standards are not given superior status just because it is the predominant neurotype. (Neurodiversity, 2022) In fact, from a Neurodiversity standpoint, it is important to see the neurodiverse population as consisting of unique wholesome individuals each with challenges and gifts. Some advocates say that the Neurodiversity paradigm takes a middle ground between the Medical Model and the Social Model. Rather than seeing neuro-developmental conditions as one extreme or the other; either pathological disorder or merely a social construction, there is more complexity to it. For instance, neuro-developmental conditions impact social communication which means that when it comes to interpersonal relationships, the impairment as well as the disabling social environment manifests. Sometimes this means that the neurdiverse individual may benefit from working with a professional therapist to improve social skills. Other times, it means that the neurodiverse individual is suffering from the disabling social and/or sensory environment around them and that needs to be addressed. And still, there are times when both parties have made hurtful mistakes and have responsibilities to improve or make adjustments in order to repair the rupture in the relationship. Blame or fault towards the individual with the neuro-developmental diagnosis should not be assumed just because they are one labeled with the communication-based disorder.
Value-Neutral Model
Just as the Medical Model used to be the only way of thinking and talking about disability before the Social Model emerged as a more progressive updated view, more models are emerging over time that go beyond the limitations of the Social Model view of disability as purely a social construction. One such model is the Value-Neutral Model. The Value-Neutral Model is similar to the Neurodiverse Model in the way it attempts to synthesize the Medical Model and the Social Model. The Value-Neutral Model can be applied broadly to all kinds of disabilities and conditions whereas Neurodiversity is specific to those with brain wiring differences such as those with neur-odevelopmental and/or mental health conditions. In the book “The Minority Body: A Theory of Disability”, Elizabeth Barnes describes the Value-Neutral Model into detail. She distinguishes between bad-differences and mere-differences. Barnes rejects that disability is a bad-difference, arguing that disability isn’t inherently bad. Rather living with a disability consists of a “mixed bag” of good, bad and neutral experiences. She qualifies disability as a mere-difference, the same way we understand various other social identities to be a mere-difference such as race, class, gender, sexual orientation, religion etc. It is only when we look at the context of what is combined with the disability that the disability appears as something bad. Even with bad experiences however, like ableism that accounts at least in part for most of the bad experiences, disability is still not inherently bad. It is the way in which each person living with disability relates to their disability and how they view it and that means there can be good things about disability too. The authors of the review article states that, “Even in our flawed, ableism-ridden world, there are plenty of examples of flourishing disabled people whose disabilities have played a pivotal role in their flourishing.” (Campell et al., 2018) This goes hand in hand with Disability Pride and celebrating differences that make us unique and how perceiving the world differently can be a strength. People may thrive not in-spite of their disability but because of it.
Disability Justice Framework
The Disability Justice is a framework in which Disability Rights Activists may use in contemporary times to promote a more inclusive, diverse and equitable society. There are ten principles that this framework goes by, drawn from feminist theory, critical race theory, collective liberation and cross-minority group solidarity among other justice-oriented work. The following is a direct quote of the Ten Principles. [quote]
“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 mobbing together can we accomplish the revolution we require.” [/quote] (Disability 101)
Conclusion
The history of people with disabilities is full of people exercising their human agency to fight injustices. Researchers in the field of Sociology of Disability must listen to the voices directly from people with disabilities. Further research that I would be interested in is the impact of self-advocacy training on the lives of people with disabilities. I wonder the role of technology in connecting individuals with disabilities who may have alternative modes of communication and how that can include a broader range of voices. I also wonder how inclusion efforts in turn evolves contemporary culture and impact society’s well-being.
References:
“Ableism: Types, Examples, Impact, and Anti-Ableism.” Medical News Today, MediLexicon International, https://www.medicalnewstoday.com/articles/ableism#examples.
Barnartt, Sharon N. “The Sociology of Disability (Chapter 27) – The Cambridge Handbook of Sociology.” Cambridge Core, Cambridge University Press, 2017, https://www.cambridge.org/core/books/abs/cambridge-handbook-of-sociology/sociology-of-disability/3C9A7C1092379F66507665BCB9F4F571.
“Disability 101 – Mad Lab at Cal.” DISABILITY 101, https://disabilitylab.berkeley.edu/disability-101/.
“Disability and Health Overview.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 16 Sept. 2020, https://www.cdc.gov/ncbddd/disabilityandhealth/disability.html.
“Disability History.” National Museum of American History, https://americanhistory.si.edu/topics/disability-history.
“Disability in the Middle Ages.” Wikipedia, Wikimedia Foundation, 14 Apr. 2022, https://en.wikipedia.org/wiki/Disability_in_the_Middle_Ages.
“Intersectionality Definition & Meaning.” Dictionary.com, Dictionary.com, https://www.dictionary.com/browse/intersectionality.
“Moments in Disability History.” Disability Social History Project, https://disabilityhistory.org/moments-in-disability-history/#:~:text=Moments%20in%20Disability%20History%20Period%20%E2%80%93%20BC%203500,with%20an%20iron%20prosthesis%2C%20and%20returned%20to%20battle.\.
“Neurodiversity.” Wikipedia, Wikimedia Foundation, 27 Nov. 2022, https://en.wikipedia.org/wiki/Neurodiversity.
“Nothing about Us without Us.” Wikipedia, Wikimedia Foundation, 10 Nov. 2022, https://en.wikipedia.org/wiki/Nothing_about_us_without_us.
Reviewed by Stephen M. Campbell, Bentley University. “The Minority Body: A Theory of Disability.” Notre Dame Philosophical Reviews, 29 Nov. 2018, https://ndpr.nd.edu/reviews/the-minority-body-a-theory-of-disability/.
S;, Wendell. “Toward a Feminist Theory of Disability.” Hypatia, U.S. National Library of Medicine, 1989, https://pubmed.ncbi.nlm.nih.gov/11787505/.
Sarah Buder & Rose Perry, Ph.D. “The Social Model of Disability Explained.” Social Creatures, Social Creatures, 5 Nov. 2021, https://www.thesocialcreatures.org/thecreaturetimes/the-social-mode
“Self-Advocacy.” Wikipedia, Wikimedia Foundation, 29 Sept. 2022, https://en.wikipedia.org/wiki/Self-advocacy#:~:text=The%20term%20self-advocacy%2C%20which%20means%20speaking%20up%20for,and%20is%20part%20of%20the%20disability%20rights%20movement.
“Women and Disability: Feminist Disability Studies.” The Center on Human Policy Women and Disability Feminist Disability Studies , https://thechp.syr.edu/women-and-disability-feminist-disability-studies/.
