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.
Third Wave: The Equity Model of Disability
A set of recent statements by the NIH has established a third model of disability. One could call this the equity model of disability, based entirely on the inequality of social or health outcomes. This model, while seeming to resolve complex disparities between groups, actually risks crossing over into blatant bigotry.
The NIH recently proposed a change to its mission statement, seeking to remove the phrase “reduce illness and disability” and replace it with “optimize health and prevent or reduce illness for all people.” This proposed change effectively erases the category of disability, replacing “disabled” with “all people.” In conjunction with a recent call for research proposals, the NIH’s changing language around disability has simultaneously erased the category of disability and applied disability to every underprivileged group.
In a recent press release, the NIH defined the disabled as “persons with unequal health disparities” and “racial and ethnic minority groups, people with lower socioeconomic status, underserved rural communities, and sexual and gender minority groups.” The NIH announced that priority funding is available for research projects centering on the “intersecting impact of disability, race and ethnicity, and socioeconomic status on healthcare access and health outcomes.” Not once did the press release mention physical impairment or anything that distinguishes the health disparities of the disabled from other at-risk groups.
Following the logic used by the NIH, any individual within a group designated as having health disparities is, by definition, disabled. As a result, poor minorities are being defined as disabled not because of any physical impairment or limitation of their social environment but by virtue of group status as a minority or other underprivileged group. While the equity model is an attempt to overcome disparate health outcomes across groups, this definition erases physical disability and focuses on group characteristics as the defining factor of disability.
The NIH’s definition of disability heralds a strange new world, one where disability is completely decoupled from the earlier medical model and separated from even the more recent social model. One’s family or place in society isn’t the defining factor for disability, but rather, one’s social grouping, race, ethnicity, and location. Under the equity model, one would be hard pressed to say what disability is. As a result, we are merely left with what it is not—equal outcomes for “all people.” The NIH’s statements are echoes of ivory tower activism, where expanding definitions of disability as “useful for creating social change under a group identity lens” focus on “redistribution to meet the varying needs of the whole population.”
What are the repercussions of changing and expanding definitions of disability, and how do they affect families attempting to access a limited pool of government resources? Record government spending has repercussions; Medicaid and Medicare spending is projected to double by 2032, rising to $2.7 trillion from $1.4 trillion in 2021, even while our tax base shrinks due to population decline. Disabled individuals may find themselves caught between definitions as the state uses the medical, social, and equity models of disability to determine program eligibility.
When my son, David, was denied Medicaid after a lengthy application process begun at birth, our denial letter stated that although he met the medical disability requirements to receive services—he is medically disabled by the state’s own admission—the state would not admit that he was disabled enough to receive services. Following the social model, Medicaid determined that David’s experience of his disability was lessened due to his home environment, citing a two-parent household and a flexibly employed mother as evidence. A child with obvious, severe physical disabilities was denied services for which he medically qualifies based on the state’s assessment of the child’s social environment.
The social model of disability was weaponized against my son and was used as a form of discrimination against David. David’s environment was too privileged for him to truly be disabled in the eyes of the state. David’s blindness, deafness, immobility, brain abnormalities, inability to use language, and complex orofacial defects say otherwise. David is unable to participate in society as a normal child—he is hindered at every turn because of his body. But because his social environment is privileged by way of his parents, in the state’s view, that compensates for David’s shortcomings, even though he cannot complete a single independent activity of daily living.
David is disabled not because of the structural ableism present in society, but because his body is a type of prison, a symptom of a world in which things sometimes go very, very wrong. His fight is not with society but with his broken body. David’s fight is not with structural discrimination but with death and decay woven into his DNA. David proves that we all were meant for something more than this. This cannot be all there is. Our hope must not lie in adequate accommodations but in a renewed body and mind.
David is not a member of an intersectional identity, of a prized identity class, as proponents of the equity model would claim. David does have the privilege of a loving family invested in his life. However, this does not invalidate his disability or make him any less deserving of aid. David should be assessed based on the very real limitations of his own body, not the privileges of his community.
Our experience with this complex web of contradictory information and confounding factors is far from unique to our family. David’s struggle to qualify for Medicaid despite the expanding definition of disability shows that there is a chronic issue with our government’s over-promising solutions and under-delivering. For children, this is particularly problematic.
In the aftermath of COVID, a record number of children have been flagged for developmental delays. Any child experiencing a developmental delay is eligible for participation in early intervention services nationwide, a joint venture between federal and state funding that serves children from birth to age three, providing a range of therapies. However, last year, even as a growing number of children attempted to access services specifically for speech delays that may have been the result of mask mandates, the CDC subtly changed benchmarks for some developmental delays. Fewer children were able to access services. This problem is not particular to speech delays post-COVID: nearly sixty percent of developmentally delayed children in New York City are unable to access a variety of legally available services through early intervention programs.
In my home state of North Carolina, Medicaid was expanded at the end of the COVID emergency to a historic degree. Yet there’s a waiting list in my county alone of more than 800 disabled adults and children who legally qualify for Medicaid through a particular waiver. However, due to limited funding and little movement from our legislature, these needs remain unresolved. The waiting list across the state is estimated to be more than ten years long. Disabled children and adults die in my state without ever accessing services to which they are legally entitled. Changing and expanding language around disability has done little to assist these needy children and adults.
The state’s attempt at “legibility,” in the words of James C. Scott in Seeing Like a State, is the process by which the state stratifies, labels, and defines its populace. Legibility functions like a map, such that the state’s system of language does not just define reality but makes it.
In some ways, forcing the legibility of the human condition into parts that can be assisted by the state is helpful. We need accurate terms to enact and create policy solutions to real issues. But when the state concludes that one size fits all, one term fits all, and internal barriers hinder accessing services, the local community must resist bureaucratic colonialism.
David did end up qualifying for Medicaid, after a lengthy appeal process and with the aid of a local attorney. It took witness testimony in the form of letters from our physicians and people invested in David’s care to make the case that he did indeed meet the state’s definition of disability.
It took a community to bear witness to David’s disability, and it should have been a given.
The Need for a New (Old) Model of Disability
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; in this way, David and I are the same.
All three models of disability—medical, social, and especially equity—are unable to grasp the nature of disability, even while constantly expanding the category. Disability is not simply a list of medical pathologies, social inhibitors, or unequal outcomes between groups. Disability goes much deeper than this. It is a feature of our shared humanity and evidence (albeit to varying degrees) of our shared fragility.
There are many ways to be broken, but not all broken people are disabled. When we lose the ability to make distinctions, we also lose the ability to help in the distinct, particular way that charity often demands. We are unable to assist the orphan if we call him simply disabled; he needs a father and a mother, not a wheelchair. We are unable to assist the poor woman if we call her disabled; she needs shelter, food, and clothing, not an adaptive computer program for the blind. A widow is not in pain because she is disabled, but because her family has been broken. The oppressed are not necessarily disabled: they are cheated, lied to, and taken advantage of. Language matters deeply because it not only describes but teaches. We must use the right terms at the right times to give voice to the voiceless.
In this strange new world, we must not let the state capture and turn our language into a sort of program detached from reality, one where we are always over-promised and under-served, separated from the witness of our community. I am not a computer or a machine; David is not a drop-down list pre-loaded into a form. David is a person, made in the image of God. The state can provide no such dignity to a person, no matter how many terms they conflate. The church has the language, the tools, and the gifts to attend to the many needs that surround us.
The lives of my disabled brothers and sisters, my poor neighbors, the sick, the prisoner, the widow, and the orphan must be shared. But to share the burden, I must first recognize without word games the reality of disability, as well as the other myriad problems facing my community. Perhaps then can real policy solutions be enacted to bring about real change.