By changing language, the state attempts to solve a metaphysical quandary, and something intangible changes about our reality. Our government’s rush toward one-size-fits-all solutions means the particularities of individual lives become lost in the maze of a bureaucratic process. Disability is a stark reminder of the human condition. It is more than a problem to be solved, although there are real problems for disabled people that need real solutions. Disability is a valuable teacher. It can catechize us on the nature of our humanity, and teach us about our mortality. We all can and should hope for redemption for our broken bodies.
My son is blind, immobile, nonverbal, and hearing-impaired, with multiple brain abnormalities and complex orofacial birth defects. Is he disabled? It depends on whom you ask.
According to Pew Research, thirteen percent of all Americans are disabled. However, the CDC considers more than twenty-five percent of all Americans as disabled, including seventeen percent of children. In contrast, the National Survey of Child Health considers just over four percent of American children to be disabled. These statistics represent alternate realities.
What is the reason for this wide disparity? Some definitions of disability are limited to activities of daily living, or ADLs, such as eating, walking, bathing, and toileting. Others are broader, including behavioral, mental health, and sensory impairments. While disabilities have increased for all Americans, children, in particular, have experienced a huge rise in disability. An NIH study uses the capacious “developmental disabilities” category for its analysis, incorporating recent rises in ADHD, autism, and learning disabilities, making up a majority of new inclusions. Under this definition, more than half of those children considered disabled have ADHD, with blindness by comparison only contributing to 0.16 percent of the total. More broadly still, one researcher defines disability in children as “activity limitations” including “anything that the parent identifies that their child isn’t able to do in the same way other children are able to do.” Perhaps unsurprisingly, this definition resulted in a twenty-eight percent relative increase in childhood disability within well-off households relative to those in poverty. This definitional morass has significant implications for politicians, educators, and parents, as state resources are allocated using widely disparate disability markers.
Changing definitions of disability create policy headaches and alter our perception of reality. By broadening the definition of disability, the state sets up a self-fulfilling prophecy. Driving the state’s changing standards of language is both political self-protection and political reward. Lumping complex social factors under one label is the state’s sleight of hand. By using such a broad understanding of disability, and therefore limiting conversation about other social, environmental, or economic factors, the state can both absolve itself of needing to provide real policy solutions and proclaim itself the protector of a victimized class.
As the state mediates our social interactions by adapting our language to fit its own ends, our social fabric frays and Christian charity weakens. The church has a unique responsibility to use precise language to describe the full range of human brokenness, particularly in children, allowing us to accurately attend to the real needs of others while offering true hope in the renewal of creation.
Three Models of Disability: Medical, Social, and Equity
Our government currently uses three models to define disability for both adults and children. The state categorizes human interactions and experiences of disability in definitions that both create and support a bureaucratic process. Language changes reality. These models, while emerging chronologically, are used simultaneously. The definition of disability has expanded under each subsequent model, moving from a limited definition under the medical model, to a more inclusive social definition, to finally a potentially unlimited definition of disability under the equity model.
First Wave: The Medical Model of Disability
The medical model, true to its name, views disability as a purely physiological issue to be handled within the bounds of the medical system. This is the oldest operative view of disability, with origins in the scientific model of medicine that began in the nineteenth century. Under the medical or pathological model, disability is primarily a disease, diagnosed by a physician, subsequently necessitating medical intervention to alleviate, manage, or cure. One cannot be both healthy and disabled. Under the medical model, disability is a function of the body, limited to the individual experience.
This paradigm views disability as purely a problem of the individual, disregarding quality of life concerns and communities of care outside of the medical system. Diagnostic terms and prognoses can be unnecessarily deterministic, potentially legitimizing social stigma against the disabled. The medical model is uninterested in the broader political and social milieu in which the disabled person finds himself. Naming disability as a disease implies a fixed reality to life with a disability that advocates adamantly protest. Interpreting disability through the medical model can seem like a life sentence to a diminished reality, one where the disabled individual is always diseased.
The medical model of disability is the original building block that has now given way to models that better fit current social values. However, vestiges of the medical model remain. The best example is the use of ADLs, or activities of daily living, to define disability. According to guidelines from the Health and Human Services Department, any survey form assessing disability must include six questions “representing a minimum standard.” These questions focus on an individual’s difficulty with vision, hearing, cognition, mobility, and self-care limited to dressing or bathing.
Using the medical model to define disability results in fewer disabled Americans when compared to other models. Under its definition, a 2019 report from the Census Bureau states only 4.3 percent of American children are disabled. A similar 2010 report from the Census Bureau found that 4.4 percent of those aged six and older needed assistance with one or more activities of daily living.
Second Wave: The Social Model of Disability
The social model of disability was introduced in the 1960s as advocates for the disabled preferred a more holistic approach to understanding disability. It stands in contrast to the limited medical model that many felt was discriminatory. Proponents of disability rights pushed back against the idea that disability was a disease to be cured, and instead advocated a definition of disability that recognized the relationships between individuals and society.
The social model distinguishes between “physical impairments” inherent to the body, and “disabilities” that advocates see as the limitations of society. As such, the disabling factor is not our biological reality, but society’s shortcomings. If we weren’t ableists, social model proponents claim, then impairments wouldn’t be disabling. The social model of disability discredits the medical model, claiming that health issues are not always disabling if the social environment is adequately accommodating.
To its credit, the social model introduced numerous benefits. It laid the groundwork for legally required accommodations in work and public life that are life-changing for many people, notably, through the passage of the Americans with Disabilities Act (ADA) in 1990. The ADA includes in its definition protection for a range of physical disabilities as well as mental and behavioral health conditions, including dyslexia, ADHD, and autism, among others. The broadening category of disability under the social model leads to an increase in disability. As a result, according to the Social Security Administration, since the 1970s, the number of disabled beneficiaries has increased from 1.8 million to 9.2 million in 2021.
The social model of disability centers on the individual’s relationship to society, not the individual himself or his biological reality. On one webpage, the CDC defines disability as an “interaction with various barriers [that] may hinder . . . full and effective participation in society on an equal basis with others.” Disability is now a function of one’s social environment, not just how one functions within one’s social environment.
Disability has moved from a biophysical to a psychosocial marker, increasing those under disability’s umbrella. And yet another change looms on the horizon, as a recent press release from the NIH has redefined disability yet again.