We all see and talk about disability in different ways. You probably have your own “mental model”—or way that you view disability—even if you don’t realize it.1 And these ways in which we see and talk about disability reveal our beliefs and social attitudes.
Over the years, activists and academics have studied the history and culture of disability.2 Disability studies scholars call the different ways people talk about disability models of disability.
As theoretical frameworks, I note that these models are meant to be viewed as tools—they are not exhaustive, they may overlap, and they will shift and develop along with society’s changing attitudes.3 In this chapter, I share eight different models of disability—though there are more—so that we can better understand the social attitudes toward disability and why it all matters. The medical model, charity/tragedy model, and social model are the three most frequently referenced by advocates.
First, the medical model of disability views disability as resulting from physical or mental “impairments” that are located in an individual, unconnected to external environmental or social factors, similar to the Merriam-Webster definition. The medical model sees disability as a defect, deficiency, or abnormality that negatively impacts an individual’s quality of life and prevents us from being “normal.” In the medical setting, disability is viewed as a health condition that needs to be treated or cured. In other words, disability is a problem that needs to be fixed. Let’s take the example of a person who is unable to use stairs. The medical model of disability attempts to cure the person’s condition rather than address the inaccessibility of the stairs.
The medical model of disability has been criticized by advocates because it stigmatizes disability. Historically, it is the reason many disabled people were institutionalized, because the medical model saw us “as useless and hopelessly dependent on others.”4 The medical model also focuses on costly treatment, such as surgery or drugs, that may not always be in the disabled person’s best interest. A CEO of a large tech company once told me that deafness would cease to exist because of cochlear implants, without addressing Deaf culture or the high cost of some cochlear implants. Advocates and critics argue that instead of unnecessary medical interventions driven by the medical model, more resources and effort should be put into “simpler inclusionary practices like universal design and social inclusion.”5
Second, the charity or tragedy model of disability views disability as a tragic experience and disabled people as needing other people’s help and goodwill. It treats us as “victims of negative circumstance”6 and “objects of pity and charity.”7 The charity/tragedy model is often used by non-disabled people and organizations, usually charities that paint disabled people as suffering passively and in need of donations and services to survive. In the case of a person not being able to use stairs, the charity/tragedy model would encourage charitable actions like raising money to address the condition that prevents the person from using stairs or physically carrying them up the stairs rather than providing step-free access or a chairlift.
The charity/tragedy model has been criticized for causing more discrimination against disabled people by taking away our agency to make our own choices, especially when the charitable donor or do-gooder calls the shots. It lowers disabled people’s self-esteem when it makes us feel indebted to or reliant on others. Like the medical model, in which a medical professional makes the decisions and focuses on curing the individual, the charity/tragedy model is a reactive and top-down approach that tries to “save” the individual from our problems. In this case, the “problem” is the person’s disability rather than inaccessibility and ableism.
Third, the economic model of disability defines disability as an individual’s inability to work. In this model, the inherent worth of a person is tied to our ability to produce, and disability is tied to a lack of productivity in the capitalist system. The disabled person is seen as unable to contribute to society, which results in a loss of earnings for the individual, lower profit margins for the employer, and welfare payments from the government.8 This framework is used by the state to determine who can be considered “disabled” in order to receive benefits. In order to qualify for Supplemental Security Income (SSI), a needs-based federal program that provides monthly payments to disabled people, a disabled person can’t have more than $2,000 in savings or other assets, keeping many of them living below the poverty line.9
This model creates often arbitrary definitions of who is considered “disabled,” resulting in benefits being provided only to some. In our example, a person who cannot use stairs is defined as “disabled” by the state. However, this definition is flawed because a person with another type of disability who can use stairs may not be defined as “disabled,” denying us access to state benefits that we require. The economic model is also related to the charity/tragedy model because both portray the individual as “needy” and reliant on the help of others.
Fourth, the moral model of disability views a person as morally responsible for our disability. This model is often tied to religious or superstitious beliefs—for example, a person or our ancestors did something “immoral” in the past that caused our disability. As a result, the individual is seen as being at fault for our disability and deserving of it. In the example of the person who cannot use stairs, they may be seen as “not trying hard enough” or undeserving of entering the building.10
Puneet Singh Singhal, a disability inclusion advocate who lives with dyslexia, dyspraxia, and stammering, was born and raised in a slum in India and experienced extreme poverty and domestic violence. Along with becoming a caregiver to his chronically ill mother, he shared that he experienced horrific bullying in school for his speech difference. Enacting the moral model of disability, he told me, “even parents got in on the act, fearing I’d ‘infect’ their kids with my stammer.”11
Dr. Amy Kenny, a disabled scholar-practitioner who serves as the inaugural director of the Disability Cultural Center at Georgetown University, shared how the moral model of disability affected her experience, “Too often, people in my religious community have tried to pray me away. They interpret my disabled body as sinful and rope God into their ableism. We are not the ‘before’ picture of a prayer makeover or the symbol of sin used to guilt others into repenting. Disabled people are divine.”12
These first four models of disability share a common underlying theme: they assume that an individual’s disability is the problem. So these models can be categorized under the “individual approach,” also known as the “deficit perspective,” where the person is seen as having the problem. However, there is also a “social approach,” which sees society, and not the person, as the problem. And the problem is that society has failed to accommodate all people.13
This brings us to the social model of disability, developed in response to the individualistic approach of the medical and charity/tragedy models. In 1983, disability rights advocate Mike Oliver, known as Britain’s first professor of disability studies, popularized the model in his book Social Work with Disabled People. In the social model, the individual is seen as “disabled by society and their environment rather than by their own impairment.”14 What makes someone disabled is “not their medical condition but the attitudes and structures of society.”15
This way of thinking shifts the focus from trying to “fix” a disabled individual to creating “best practices for equity, like universal design and social inclusivity”16 within the larger environment. The priority is on removing barriers to participation, creating policies and practices like the ADA, increasing resources and accommodations, changing attitudes, and reforming society. You can see how this ties back to the WHO’s definition of disability that we learned in Chapter 1: What Is Disability? Under the social model, in the example of a person who can’t use stairs, a ramp or elevator would be installed to address the inaccessibility.
Then we have the human rights model of disability, developed by disabled people and officially recognized by the UN in 2006 under the CRPD.17 This model takes the social model one step further: while the social model proposes that society’s attitudes and inequitable structures are what make an individual disabled, the human rights model simply states that “disability is a natural part of human diversity that must be respected and supported in all its forms,” that “people with disability have the same rights as everyone else in society,” and that disability “must not be used as an excuse to deny or restrict people’s rights.”18
Simply put, disability rights are basic human rights, not special rights,19 and disabled people are deserving of the basic human rights that everyone else enjoys. We are citizens, we can make decisions in our own lives, we have dignity and value, and we deserve to live a life free from discrimination.
In some ways, the human rights model shares a similar spirit with the affirmative model of disability and the identity model of disability. The affirmative model emerged in 2000 as a response to the medical and social models of disability.20 In contrast to those models, the affirmative model sees disability as just a “different way of living in and experiencing the world, one not characterized by its disadvantages any more than its advantages,”21 and considers disability simply a part of our being.
The identity model of disability highlights disabled people as a unique community with a positive culture worth celebrating. Under this model, the disability community is a source of pride, and we share a common disability culture that allows us to explore our collective identity and unite around our lived experiences and a shared cause as we fight prejudice and advocate for change together.22 The identity model encourages disabled people to “see themselves more as a social or ethnic minority than as victims of biology.” Disability scholar and activist Steve Brown explains, “People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives, our culture, infused from our experience of disability. Most importantly,… we claim our disabilities with pride as part of our identity.” Promoting disability culture is a specific and powerful way to address barriers to inclusivity because “as the disability rights movement has shown, when disabled people have a sense of their collective identity and culture, they feel more empowered to fight for social change and resist discrimination.”23
Instead of adhering to a single model or writing off a model completely, we can find a balance. For example, although the medical and charity/tragedy models are outdated, and although we should reject the individual approach of these models that teach us to view the disabled person as a problem, this does not mean we should stop going to the doctor and searching for life-enhancing treatments for certain debilitating health conditions or that we should not fundraise to support the improvement of a disabled person’s quality of life. Instead, for example, we can apply key concepts from the social and human rights models in the medical setting to ensure that medical treatment is provided accessibly and inclusively through anti-ableist practices. For example, a pediatric hand surgeon who works with children with brachial plexus injuries once told me that he’d added a mental health professional to rehabilitation teams for children after their surgeries, acknowledging the interplay between physical and emotional responses to procedures and treatment. And even as we use the social model to address inaccessibility and build a more inclusive environment, we can keep in mind the frameworks of the affirmative and identity models that celebrate disability pride.
Although the models of disability grew out of disability studies, they don’t belong just in the academic world. We can use them, too. If we have an understanding of the history and usefulness of these frameworks, we can better understand how to build an anti-ableist society as individuals and as a community.