In this chapter, we will focus on one category of heritages of change: disability heritage. According to the Center for Disease Control and Prevention, one in four Americans live with a disability. Approximately one billion people, or 15% of the world’s population, experience disability (“Disability Inclusion”), making people with disabilities the “world’s largest minority” (Ladau).

Defining disability is not as easy it may at first seem. There are different ways to approach defining such a term. One is legal. The landmark Americans with Disabilities Act (ADA), originally passed in 1990 and which seeks to protect people with disabilities against discrimination in the same tradition as the Civil Rights Act of 1964, defines a person with a disability as someone who:

• has a physical or mental impairment that substantially limits one or more major life activities,
• has a history or record of such an impairment (such as cancer that is in remission), or
• is perceived by others as having such an impairment (such as a person who has scars from a severe burn).

Here, we see an attempt to restrict the definition of what constitutes a disability, particularly to be able to determine who receives the protection of the ADA and who does not in a court of law. It must be a physical or mental impairment that limits activity, but there is much room for interpretation as to what “substantially” means and what a “major” life activity is. There is also some ambiguity about “perception by others” and what exactly that means, especially in terms of invisible disabilities, such as mental health.

Beyond legal definitions, there are academic definitions. Disability scholar Dr. Rosemarie Garland Thomson, in a virtual event “The Preservation of Disability” hosted by Columbia University on September 25, 2020, commented that “[d]isability is the history of our encounters between flesh and world written on our bodies.” Whether this history is written physically or metaphorically, this approach perceives disability as a record of our individual story and how we navigate life.

There are also the ways that people with disabilities themselves define the term. Emily Ladau is a disability rights activist and identifies as having a physical disability for which she uses a wheelchair, a hearing disability, and mental health disabilities. In her book Demystifying Disability: What to Know, What to Say, and How to Be an Ally, she says disability to her is “a state of being; a natural part of the human experience,” but she emphasizes that disability “isn’t just a static term with a single meaning,” but rather a “big, broad term to describe a natural, constantly evolving part of the human experience.” Just as people with disabilities experience them differently, even when technically diagnosed with the same one, the definition of the term can change depending on the individual, their experiences, and the way they are treated.

Impairment vs. Disability

For the purposes of discussion, disability and impairment can be treated as two separate terms, not as synonyms. Impairment is the physical or medical reality, perhaps including a diagnosis – for instance, the loss of a limb. Disability refers to the experience of the person, both in everyday life and in treatment by others. So the loss of a limb may entail needing accommodations and using a prosthetic. It may also include social stigma against those who do not have what society deems a “normal” body.

Disability Studies

The academic study of disability is known broadly as disability studies. This work is interdisciplinary. It requires study in various fields – government, law, medicine, history, ethics, literature, archaeology, and art, among others – in order to understand the full experience of people with disabilities and to work to increase quality of life.

Activity 3.1

• Some educational institutions offer degrees in disability studies. Explore the description and requirements of the Disability Studies minor at Fitchburg State University.
• Imagine that you have decided to pursue this minor. Select courses to fulfill the requirements, and explain why you have selected those over others.