Who is Disabled? It’s complicated…
There are many ways to define “disability.”
Sometimes we talk about disabilities in terms of models, paradigms, or ways of viewing and organizing the world in our minds. Our mental models and our personal values often shape our actions, choices, and the policies we make in ways that might not realize – unless we pay attention.
Most people are familiar with the medical model of disability, which defines disability as a deficit caused by an individual physical, emotional, or mental impairment. Within the medical model, disability is largely an individual concern, and is managed (or ideally cured) through medical therapies or technologies. Information about disability from the Centers for Disease Control or other health-related sources most often define disability in this way.
The Americans with Disabilities Act (ADA) defines a person with a disability as “a person who has a physical or mental impairment that substantially limits one or more major life activity.” People who “are regarded” as having disabilities are also protected under the ADA (EECO).
Likewise, many other administrative definitions of disability found in federal and state law depend on the medical model – even outside of medicine.
Many people’s disabilities are related to learning and reading. The Individuals with Disabilities Education Act (IDEA) “is a law that makes available a free appropriate public education [FAPE] to eligible children with disabilities throughout the nation and ensures special education and related services to those children.” The IDEA requires that children demonstrate that they need specialized instruction and requires that learning happen in the least restrictive environment possible. That means that whenever, possible, children should learn with their nondisabled peers. This federal law applies to students with disabilities in public education through grade 12 (including school libraries), and defines disability as inclusive of the following thirteen categories:
- Autism Spectrum Disorder
- Emotional Disturbance
- Hearing Impairment
- Intellectual Disability
- Multiple Disabilities
- Orthopedic Impairment
- Other Health Impairment* (includes disabilities such as ADHD, etc.)
- Specific Learning Disability
- Speech or Language Impairment
- Traumatic Brain Injury
- Visual Impairment, including Blindness
Although this definition is grounded in a medical model of disability (and federal funding concerns), current research on education for disabled children largely acknowledges and incorporates social and disability justice approaches, with disability inclusion as the ideal (in the same way as communities continue to work toward racial, gender, and other forms of inclusion).
The social model of disability attributes disability to social, physical, legal, and economic support structures, rather than the individual. As communities, we choose how to build our systems, services, and infrastructures. We decide whose physical, mental, and emotional states are “normal” and whether or not “normal” should be the standard for inclusion. The social model says that a person who is disabled is disabled because their society has chosen not to consider their needs, and in doing so, marginalizes and disables them.
According to the International Encyclopedia of Education:
The shift from a medical to a social model is synonymous, for many, with justice and equality for disabled people. Yet it has not been immune to criticism, even from people with disabilities. Lord Low (2007), who is visually impaired, says:
If education is about anything, it is about influencing and indeed changing the individual child. One may do this by modifying the social environments in which the child is placed, but one cannot eliminate the individual dimension altogether. (p. 9)
Disability Justice Model
The Disability Rights and Disability Justice movements both focus on building more inclusive communities and societies. Disability rights has primarily focused on building legal and administrative support through federal, state, and local governments, organizations, and courts. This work through administrative systems has meant that many disabled people who are multiply marginalized (e.g., disabled BIPOC, undocumented disabled people, trans disabled people, poor disabled people) who have not traditionally had the support of these systems have not benefitted in the same way as white, Patty Berne, of Sins Invalid differentiates between the two:
The political strategy of the Disability Rights Movement relied on litigation and the establishment of a disability bureaucratic sector at the expense of developing a broad-based popular movement. Popular movements often begin when people develop political consciousness and name their experiences. Rights-based strategies often address the symptoms of inequity but not the root. The root of disability oppression is ableism and we must work to understand it, combat it, and create alternative practices rooted in justice.
While a concrete and radical move forward toward justice for disabled people, the Disability Rights Movement simultaneously invisibilized the lives of disabled people of color, immigrants with disabilities, disabled people who practice marginalized religions (in particular those experiencing the violence of anti-Islamic beliefs and actions), queers with disabilities, trans and gender non-conforming people with disabilities, people with disabilities who are houseless, people with disabilities who are incarcerated, people with disabilities who have had their ancestral lands stolen, amongst others.
Sins Invalid outlines the following ten core 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 mobbing together can we accomplish the revolution we require.
The World Health Organization promotes a view of disability that acknowledges physical, social, and structural determinants of health and wellbeing. The International Classification of Functioning, Disability and Health (ICF) (17) defines disability as inclusive of the following (quoted):
- impairments are problems in body function or alterations in body structure – for example, paralysis or blindness;
- activity limitations are difficulties in executing activities – for example, walking or eating;
- participation restrictions are problems with involvement in any area of life – for example, facing discrimination in employment or transportation.
As individualized approaches to disability, the medical (and charity) models are often used to deny disabled people’s rights to full participation, and to dismiss institutional and social responsibility for inclusive planning and design. Individualized approaches put the onus for “fixing” the impacts of disability on the disabled person. This might manifest itself in several ways:
- Thinking about and treating disability accommodations as “extra” or “special” (“extra” expense, or “special” needs) rather than inclusive planning as the default.
- Requiring disabled people to ask permission or to find a special staff member to access a key, ramp, or other piece of accessible technology.
- Relying on policies that make using space difficult for disabled people, but allowing exceptions. For many disabled people, these kinds of types of policies mean that they are constantly required to disclose personal health information to strangers to move through life safely. This is called forced intimacy (Mingus, 2018).
The opposite of forced intimacy is access intimacy. According to Mia Mingus,
“Access intimacy is that elusive, hard to describe feeling when someone else “gets” your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level. Sometimes it can happen with complete strangers, disabled or not, or sometimes it can be built over years. It could also be the way your body relaxes and opens up with someone when all your access needs are being met. It is not dependent on someone having a political understanding of disability, ableism or access. Some of the people I have experienced the deepest access intimacy with (especially able bodied people) have had no education or exposure to a political understanding of disability…it has looked like relationships where I always feel like I can say what my access needs are, no matter what. Or i can say that I don’t know them, and that’s ok too. It has looked like people not expecting payment in the form of emotional currency or ownership for access. It has looked like able bodied people listening to me and believing me.”
Pause for Reflection
Thinking about disability paradigms
On your own, write your own personal definition for disability.
When you think about a “disabled person” or a “person with a disability” what image do you have in your head?
Out of the models described here, which ones come closest to your personal understanding of what disability means in your everyday life? In your workplace?