Invisible Disability Project

at least until the 1940s—with invisible handicap. Different groups have used the term for similar purposes over time. So, for example, the earliest uses are in texts written by organizations devoted to the physical rehabilitation of workers and former soldiers. And yet, while there have been numerous references to the term, there is not one explicit definition; rather, invisible disabilities has been used in opposition to visible disabilities, those physical or mental difficulties that can been seen by the naked eye or easily identified by the layperson or the physician. Thus, while a denotation (dictionary definition) may not be possible, it is easy enough to ascertain the etymology of the term because it refers specifically to what it was not. Indeed, that is often one of the keys of lexicography: determining the definition of what something is by what it is not and in this case a definition of invisible disability may be as simple as being “a disability that is not seen.”

As defined by those who write about it explicitly and implicitly, invisible disability always has been about those types of disabilities—physical or mental problems or impairments—that prevent people from living active or full lives, as well as the inability to work without certain accommodations. There does not seem to be one clear and identifiable document in which the term is defined, but all throughout the literature the term distinguishes between many situations in which a person can not function well, according to accepted medical or social standards—this even includes an awareness of old age as an invisible disability. There is one interesting reference to an educational textbook because, while it uses the term invisible handicap is in the title, it clearly means invisible disability: “What serious handicap could school children have that the teacher does not even suspect, and the parents and school authorities hotly deny?” (n. The first type of usage occurs in texts written by government or quasi-government agencies, insurance companies, or workers’ rights groups because they are interested in both protecting workers but also protecting the organization from possible legal problems if people are not assisted carefully. These occur at the beginning in the late 1920s and become more common in the late 1940s—presumably because of veterans of World War II require assistance as well. At the same time, there is a strong and consistent focus on defining those who are either hard of hearing, who have such conditions as tinnitus, or who are deaf, as having invisible handicaps. That sense of the term seems consistent throughout this period and well into the late twentieth century that is the dominant sense of the term. While many of the books and other texts (articles and pamphlets) of the first part of the twentieth century were largely impersonal and retained a professionalized perspective, starting in the late 1950s and continuing until the present day, the discussion of not only deafness—but also invisible disability in general—became more narrative and personal in nature. So books with titles as Youth in a Soundless World: A Search for Personality, Why Did This Have to Happen: An Open Letter to Parents, and Your Deafness is Not You were becoming more directed to the individual or family, even personal narratives by those with invisible disabilities. While it is unwise to suggest that coincidence reflects causality, it seems apparent that the nature of writing about this term changes precisely around the time—the 1950s through the 1970s—when various groups in the United States were demanding different treatment and recognition for their particular needs. Needless to say, the 1990 landmark ADA (updated in 2008 and 2011) afforded legal protection from those who have invisible disabilities, some of which were defined as “hearing impairments or deafness, orthopedic impairments, learning disabilities, speech impairment and other health or physical impairments. Psychiatric disorders that are covered include: major depressive disorder, bipolar disorder, panic disorder, obsessive-compulsive disorder, personality disorders, schizophrenia and rehabilitation from drug use or addiction” (Shaw 9). It can be conclusively stated that there is a direct correlation between advocates of disability—visible and invisible—to claim for themselves a place in the discussion of how they are to behave, be treated, and be talked about in all areas of society. Indeed, the ADA considers disability rights to be civil rights. Beginning in the 1990s and especially in the 2000s, there were very strong trends to recognize disability studies within academia and in university departments. There are now organizations within and without academia: in social work and education, as well as in English, and Social Science, and Public Health departments of universities that forcefully recognize and seriously study the nature of disability—both visible and invisible. But in particular, the notion of invisible disability has been interesting to scholars in the last two or three decades as a result of post-modern philosophies dealing with linguistics (naming and identity), sexuality, and definitions of normal in legal, literary and social histories of medicine and the body. There is, for example, an entire special issue of the journal Ethics devoted to the topic (2005). There are countless books, websites, organizations, articles, and academic departments that study this issue and the desire—need, requirement—to be recognized and to self-actualize. These changes have come directly from the gay rights movement—in academic circles it is known as Queer Theory—and language has been lifted to make an explicit connection to the demand for recognition and equality of treatment in society and under the law. Most specific is the term “coming out” of the “closet,” as it applies to disabilities and the desire for those who have them to no longer accept being queer or being invisible. Moreover, the rhetoric has also explicitly connected itself with the convention and language of racial passing—either on purpose or by accident by others, and this movement has expanded to focus on civil rights and organization. To be clear, this term and movement is not limited to adults; perhaps because of the work of parents and academics, the term invisible disability is being studied and attended to in the field of education, social work, and developmental psychology. Ultimately, the definition set out by the ADA gathers all the implicit and vague references that came before and organizes them into one sense that applies to many situations, conditions, and people. The fact that the ADA has subsumed all disabilities—those visible and not, those physical and not—indicates that the terms, at least from a legal perspective, is becoming less relevant. Definition of the term:

The term invisible disability [ɪnˈvɪz.ɪ.bl̩ ˌdɪs·əˈbɪl·ɪ·t̬i] is a compound noun. Its two constituents, invisible and disability, are themselves made up of other parts called morphemes, or the smallest parts of words that contain meaning. Invisible is an adjective made up of three morphemes. It has one prefix, in- (which means to negate, or the opposite of); one root, visi- (to see, observed); and one suffix -ible (which is a variant of -able and means worthy or capable). The stem and the suffix are joined first to create the word visible, meaning seen or understood. To make the word invisible, the prefix is added last and this prefix negates the suffix, so that something that could be seen becomes something that cannot be seen. Disability is a noun that is likewise created by adding two morphemes to a root. The word is created by taking the adjective root able (related to the suffix above) and adding first the suffix
-ity (meaning quality, or degree of something). That creates the new noun, ability, and this word means competence or proficiency. Then, the prefix dis- (which means undo, take away) is applied to create another noun, which now means the opposite of ability and means instead not having competence or proficiency. That is the denotation of disability. The connotation of disability, however, is more complex. The word has quite a long history spanning several centuries and it originally applied to things that impede or stop the social, political, or economic progress of groups or individuals—in fact, it was used most often in the context of the law. The current and most familiar definition, however, is applied to situations in which a person’s ability to do something is impeded or disallowed and was first applied to someone’s appearance or bodily functions. Later, the term expanded to include situations in which someone has difficulty with or impairment to mental or neurological abilities. When viewed as a whole, invisible disability is a compound noun that means a disability that cannot be viewed or understood merely by sight. Put in current social, political, and legal contexts, the term covers and applies to people who can call themselves or who are legally allowed to be classified as disabled, even when their disability cannot be seen. These disabilities, therefore, require other people to accept that the body, brain, and mind are complex systems that do not always function well, or work efficiently, and people have varying degrees of ability. With the acceptance and use of this term, the onus is no longer on people with disabilities to prove that they are disabled.