Person-First Language vs. Identity-First Language: An examination of the gains and drawbacks of Disability Language in society

By Phillip Ferrigon
DSSV 607 – Higher Education Disability Service Administration
Professor Kevin Tucker

Abstract

The semantics of disability language is a sensitive topic of discussion amongst societal and political culture. The use of person-first (or people-first; PFL) language has been criticized since its terminology was featured in legislation of the Americans with Disabilities Act (1990). This mainstream action was designed by Disability Rights activists to ‘infuse some disability culture in the ADA’ (Haller, Dorries, & Rahn, 2006). Consequently, language in regards to cultural depiction has shifted and changed disability identity for many. Advocates against person-first language imply the use can actually be detrimental to the cultural identity of people with disabilities and promotes the use of identity-first language (IFL), which acknowledges that a disability is respectfully entwined with one’s identity. The rationale for person-first language and the emergence of identity-first language, respectively, can be linked to particular models of disability. I attempt to examine the effects of each language use, the challenges they pose for individual identity and determine the preferred use for my own personal strategy. The references utilized consist of peer reviewed articles and various blogs of person first perspectives.

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‘Sticks and stones may break my bones, but words will never hurt me’. We have all heard this popular children’s rhyme more than once in our lives. This adage combats victimization by ignoring taunts from antagonists, while preserving one’s tranquility and good-natured being. But for this phrase to hold any truth, it would absolve power from words, making them hurt less than physical pain. This statement is false. Words have power. The texts can be small and the sounds may be simple puffs of wind, but words have the capability to express feeling, teach and deliver information. Words can empower others through inspiration and yes, words possess the capability of hurting people on an emotional level.

Language reflects, among several other things, attitudes that speakers want to exchange or that are just reflected through language use. Sociology of language would explore the manner that social dynamics are affected by individual and group language use. Notable psychologist Henri Tajfel (1979) proposed that the groups which people belonged to were an important source of pride and self-esteem. His famed social identity theory is defined as ‘that part of an individual’s self-concept which derives from his/her knowledge of their membership in a social group’ (Jaspal, 2009). The main premise of social identity theory is that group members of an in-group or dominant culture, will seek to find negative aspects of an out-group or inferior culture, thus enhancing their self-image. The extreme of this categorization practice can be prejudice and discrimination towards other groups. The intent of this reference is to highlight the psychological relation language has with society.

Groups give us a sense of social identity: a sense of belonging to the social world. People with disabilities are globally amongst a traditionally marginalized group. An individual associated with this population can face barriers politically; face economic challenges and struggle with social positioning. Language of oppressive relation is attributed to attitudinal barriers, which can contribute in forms to all other obstacles for the disabled community. Words and the language a society uses can help shape both conscious and unconscious beliefs. Disability is the one category that can befall upon anyone at any time, unlike a subordinate ethnic group or gender. While disabled people can be considered a minority group historically assigned an inferior status, disability has functioned for all cultures ‘as a sign of and justification for inferiority’ (Davis, Introduction: Normality, Power, and Culture, 2013).

Although the category of disabled has existed for a long time, its present form as a ‘political and cultural formation has only been around since the 1970s, and has come into some kind of greater visibility since the late 1980s’ (Davis, The End of Identity Politics: On Disability as an Unstable Category, 2013). In the US, a chief objective of the disability rights movement during the 1970s was to move American society to a new and more positive understanding of what it means to have a disability (Kaplan, 2000). The Americans with Disabilities Act (1990) marks a significant change to some of the corresponding shifts in public policy. The Act was crafted by disability rights activists, in an effort to bring ‘significant change in the USA by eliminating societal barriers that people with disabilities faced’ (Haller, Dorries, & Rahn, 2006). Knowing that status and identity are at the center of disability policy, the language used in this legislation was designed to refrain from extending a marginalized theme.

Disability rights advocates stress that disability language which retains a figure of suffering, pity and dependency (i.e. cripple or handicap) will need to be challenged, as our society progresses. The passage of the ADA included the phrase ‘people with disabilities’, which is known as ‘people-first’ terminology. People-First language (or Person-First language; PFL) is the preferred disability terminology by activists. The attempt in using PFL is placing the person first, allowing others to disassociate the disability as the primary defining characteristic of an individual, and viewing disability as one of several features of the whole person. In a society that perceived disability as dehumanizing, advocates wanted those around them to recognize that ‘having a disability does not, in fact, lessen your personhood’ (Ladau, 2015).

The below table is a guideline of terms, in which people with disabilities are described (NYLN & KASA, 2016). This list also includes respectful terms, including common PFL terms, which is encouraged for use to describe different disabilities.

Disability	Out-Dated Language	Respectful Language
Blind or Visual Impairment	Dumb, Invalid	Blind/Visually Impaired, Person who is blind/visually impaired
Deaf or Hearing Impairment	Invalid, Deaf-and-Dumb, Deaf-Mute	Deaf or Hard-of-hearing, Person who is deaf or hard of hearing
Speech/Communication Disability	Dumb, “One who talks bad"	Person with a speech / communication disability
Learning Disability	Retarded, Slow, Brain- Damaged, “Special ed”	Learning disability, Cognitive disability, Person with a learning or cognitive disability
Mental Health Disability	Hyper-sensitive, Psycho, Crazy, Insane, Wacko, Nuts	Person with a psychiatric disability, Person with a mental health disability
Mobility/Physical Disability	Handicapped, Physically Challenged, “Special,” Deformed, Cripple, Gimp, Spastic, Spaz, Wheelchair-bound, Lame	Wheelchair user, Physically disabled, Person with a mobility or physical disability
Emotional Disability	Emotionally disturbed	Emotionally disabled, Person with an emotional disability
Cognitive Disability	Retard, Mentally retarded, “Special ed”	Cognitively/Developmentally disabled, Person with a cognitive/developmental disability
Short Stature, Little Person	Dwarf, Midget	Someone of short stature, Little Person
Health Conditions	Victim, Someone “stricken with” a disability (i.e. “someone stricken with cancer” or “an AIDS victim”)	Survivor, Someone “living with” a specific disability (i.e. “someone living with cancer or AIDS”)

The semantics about groups involved in a social movement has always been a position of contention. The dominant culture generally resists these language shifts, ‘often derogatorily labeling them as political correctness’ (Haller, Dorries, & Rahn, 2006). Nevertheless, Using PFL acts as an agent of this change, as advocates like author Kathie Snow references using PFL as crucial to cease the actions that devalues people with disabilities and perpetuates barriers towards inclusion. Because society tends to view disability as a “problem,” (Snow, 2005), this perpetuates myths and labels upon individuals medically diagnosed with a disability. Identity can be defined socially, once a disability is made visible. Considered to be a method of empowerment and based on her own experience raising a son with cerebral palsy, Kathie advises others to use positive and accurate descriptors develop a person’s self-image, instead of a collection of inferior description like “defects”, “problems” and “body parts”’ (Snow, 2005).

To effectively produce sociocultural change, the US Disability Rights Movement continues to directly engage media and other influential institutions by bringing attention to the linguistic frames used to illustrate disability (Haller, Dorries, & Rahn, 2006). With the consideration that much of society is exposed to views of disability almost completely through efforts of mass media, media coverage of the ADA passage promoted an awareness of PFL as the preferred language with which to refer to people with disabilities. Authors Haller et al (2006) conducted a trend study analyzing the media labeling of people with disabilities in the US new media. Reviewing ten years of articles from The Washington Post and The New York Times revealed a decline in outdated terms like ‘handicapped’ and more use of ‘wheelchair user’, illustrating the growing political influence of the disability rights movement over society. The influence of PFL grew after the ADA, seeing local and state governments embrace people-first language as the law of the land (ex: Pennsylvania Governor Robert P. Casey mandated ‘people-first’ language in an executive order barring discrimination based on disability in state government) (Haller, Dorries, & Rahn, 2006).

PFL was adopted as a general linguistic rule (Ladau, 2015), utilized greatly by personnel in influential, specialized circles of profession (i.e. educators, doctors, politicians). However, advocates for the use of People-First language have faced criticism from members within the same community. Cara Liebowitz is a writer and disability activist. Acknowledging the good intentions of PFL to promote respect for the disabled community, Cara notes that this does not take away from the rationale of PFL resting on the belief that disability is seen as something negative. Cara indicates gender or religion being used to describe a person can raise no concerns, as these features are regarded as ‘neutral, if not positive characteristics’ (Liebowitz, 2015). A disassociation of character identity is implied with the use of PFL, separating the disability from the person, because disability is regarded by society in a tarnished manner. Separating the person from his or her disability is the aim of people-first language. This action is not possible, as Cara indicates; disability is a part of her identity and is not an interchangeable distinction (Liebowitz, 2015).

There are communities within the disability population that oppose the use of PFL to define their identity. Advocates of the Autistic movement for example, prefer the term “Autistic person”, rather than “person with autism”; as the former is recognized as affirming and validating to an individual’s identity as an Autistic person and the latter suppresses the individual identity, referring to Autism as something inherently bad like a disease (Brown, 2011). Emily Ladau is a writer and disability activist, who also prefers to acknowledge disability as a part of her identity and refers to herself as a disabled person. Emily refers to a countermovement on PFL known as Identity-First Language (IFL). IFL places the disability or disorder first in the description of the person. Another linguistic concept like PFL, only this justification behind IFL is that disability accepted as part of an individual’s identity, as it is regarded as a natural circumstance.

The difference between “having a disability” and “being disabled” boils down to two sociological philosophies: the medical model of disability and the social model of disability (Egan, 2012). The medical model or the idea that a person has a disability indicates that the problems associated with disability are deemed to reside within the individual; placing no responsibilities on society to make a “place” for persons with disabilities, since they live in an outsider role waiting to be cured (Kaplan, 2000). The social model regards disability as a normal aspect of life, rejecting the notion that people with disabilities are inherently defective (Kaplan, 2000). In fact, societal barriers impeding an accessible environment can be regarded as the true cause of disability, rather than a person’s impairment or difference. The medical model is recognized as the dominant notion in society (Egan, 2012), whereas the social model is championed through efforts of the disability rights movement.

Lydia Brown of the Autistic Self Advocacy Network notes that in the debate of PFL vs IFL, both positions will often use the same arguments to defend their stance and yet ‘come to very divergent and contradictory conclusions’ (Brown, 2011). Surprisingly, advocates of PFL and those in favor of IFL both claim foundation in the social model of disability (Burns, 2016). Author Tanya Titchkosky examined the representation of disability that is generated by ‘person first language’; the dominant linguistic formulation of disability in Canada. The study reveals that the effects of PFL can actually remove the understanding of disability as a social occurrence, since disability is organized in a medicalized and individual matter. As the author cites ‘PFL organizes a consciousness of disability (in society) as a condition of limitation and lack that some people “have” (Titchkosky, 2001), which does not associate with essence of the social model of disability an environmental barriers.

Disability rights activists who pushed for PFL as the preferred disability terminology infused disability culture in the mainstream of the USA. It is also considered proper disability “etiquette” or polite behavior to address disabled individuals using person first terminology, as anything different can be interpreted as insensitive to current terms or offensive. On the contrary, proponents of PFL face criticism that their action can be regarded as perpetuating ableism. Amy Sequenzia is a non-speaking Autistic, disability activist and writer. Noting the history of PFL as being ‘co-opted by non-disabled people who believe they have the authority how disabled people should declare their identity’ (Sequenzia, 2016), Amy alludes that this is the very definition of ableism, which characterizes persons as defined by their disabilities and as inferior to the non-disabled. Amy states proponents of who use PFL as an expression of respect or holding non-controversial stance, is actually doing the opposite. Ignoring the identity preferences of actual disabled people just reinforces the idea that non-disabled people are more capable of determining what is best for the disabled community. In addition, distancing disability from one’s identity actually constructs a ‘collective representation of disability in an ableist culture’ (Titchkosky, 2001).

Regardless of the differences and opposition referenced regarding the preferred language used by disabled and non-disabled advocates, the most important note to consider is to respect others’ choice for how they wish to be identified. Language around disability is complicated and there is currently no universally accepted term for everyone. Even the terms that are considered most acceptable like people with disabilities (PFL) and disabled people (IFL) are not universally accepted by individuals in various populations of disability. As Cara Liebowitz referenced, individuals with intellectual disabilities usually prefer people-first language, whereas the Autistic and Deaf communities both strongly prefer identity-first language. A person who chooses IFL acknowledges that disability is intertwined into their identity, where as a PFL proponent can choose to focus on the person that is not defined by their limitations. Therefore, in order to be respectful towards others, it is usually unoffending to default to the most acceptable term by that community. The best practice, as many disability advocates would indicate, is to utilize the term that the individual prefers.

What is not acceptable is applying one’s preference of language upon another’s label of choice. For example, proponents of PFL like Kathie Snow, considers the word ‘disabled’ as an inaccurate descriptor and ‘inappropriate’ to describe others with disability (Snow, 2005). However, if a person expresses an alternate preference, it is equally inappropriate and disrespectful to insist that they conform to the perceived dominant preference. Disability can be defined as societal barriers, which limit individuals with impairments from inclusion (Egan, 2012) or used by various subgroups like the Blind, Deaf and Autistic communities, as a sense of disability pride (Liebowitz, 2015). The point refers back to using the best practice of asking how the individual prefers to be recognized. As Emily Ladau states, ‘each person’s relationship to language and identity are deeply personal, and everyone’s identity choices are worthy of respect’ (Ladau, 2015).

Speaking for myself, I find the arguments in favor of both person-first language (PFL) and identity-first language (IFL) to be interesting, and at the same time, challenging to uphold. As a transitioning disability service practitioner, I seek to gain as much knowledge about the population I wish to serve in a higher education setting. Prior to my education, I have frequently used PFL language as a descriptor, abiding to the mainstream message of disability etiquette. I will continue to use descriptions like student with disabilities in response to class material or discussions with classmates and professors, as the use of PFL was affirmed by several study material, I have reviewed. For example, in regards to students with learning disabilities who are transitioning from high school to college, PFL is encouraged to be used as the preferred disability terminology. This standpoint requires people (including the student) to view the student as a person with unique talents and needs, in addition to ‘serve as a foundation upon which self-determination and independence can be developed’ (Madaus, 2005).

With such advantages to others that come with applying PFL language, it is reassuring to continue its use with good intentions. But as Lydia Brown indicates, in reference to this on-going debate of semantics in the Autism community, proponents of PFL need to be cognizant of the consequences to using this language (Brown, 2011). A person’s intent may be genuine using PFL, but it also has the ability to prolong ableism to individuals with disability, as Amy Sequenzia referenced earlier. Depending on the individual’s perception, PFL can in fact, perpetuate the ‘stigma it claims to be fighting’ (Ladau, E. 2015). In contrast, using IFL has the capability of drawing opposition to terms considered outdated and derogatory, ‘perpetuating stereotypical perceptions’ (Snow, 2005). It’s a challenging exercise to anyone who wants to exhibit respect to others. Citing the disability and media academic Beth Haller, the common argument from both sides of the terminology discussion agree on is that “language about disability is important…and we must all “carefully traverse a variety of disability terminology” (Burns, 2016).

Indeed, there are a number of ways to address disability and remain respectful. I still struggle with certain disability terms and suspect that I will always have some issues, because language is flexible and not fixed. As evidence in the Haller et al (2006) study on media labeling, a description that is considered appropriate today can easily be regarded as offensive for another generation. The lesson I shall continue from this review is to focus on respecting individuality, and not formulate opinions and expectations for a whole group. In regards to my eventual career, institutional marketing towards disability etiquette would be a great implement to disseminate this information of language upon the campus community and training of faculty and staff. The message to convey is that it doesn’t cost anything to respect another’s identity choice, but the potential to earn a meaningful relationship increases with its action.

Works Cited

Brown, L. X. (2011, August 4). The Significance of Semantics: Person-First Language: Why It Matters. Retrieved April 27, 2017, from Autistic Self Advocacy Network: http://autisticadvocacy.org/about-asan/identity-first-language/

Burns, S. (2016, January 23). People first vs identity first: a discussion about language and disability. Retrieved April 27, 2017, from croakey; independent, in-depth social journalism for health : https://croakey.org/people-first-vs-identity-first-a-discussion-about-language-and-disability/

Davis, L. J. (2013). Introduction: Normality, Power, and Culture. In L. Davis, The Disability Studies Reader Fourth Edition. Routledge; 4 edition.

Davis, L. J. (2013). The End of Identity Politics: On Disability as an Unstable Category. In L. J. Davis, The Disability Studies Reader Fourth Edition. Routledge; 4 edition.

Egan, L. (2012, November 9). I’m Not A “Person With a Disability”: I’m a Disabled Person. Retrieved April 27, 2017, from xojane.com: http://www.xojane.com/issues/i-am-not-a-person-with-a-disability-i-am-a-disabled-person

Haller, B., Dorries, B., & Rahn, J. (2006). Media labeling versus the US disability community identity: a study of shifting cultural language. Disability and Society Vol. 21, No. 1, 61-75.

Jaspal, R. (2009). Language and social identity: A psychosocial approach. Psych Talk, 17-20.

Kaplan, D. (2000). The Definition of Disability: Perspective of the Disability Community. Journal of Health Care Law & Policy.

Ladau, E. (2015, July 15). Why Person-First Language Does’t Always Put The Person First. Retrieved May 1st, 2017, from Think Inclusive: https://www.thinkinclusive.us/why-person-first-language-doesnt-always-put-the-person-first/

Liebowitz, C. (2015, March 20). I am Disabled: On Identity-First Versus People-First Language. Retrieved April 28, 2017, from the body is not an apology: Radical Self Love for Everybody and Every Body: https://thebodyisnotanapology.com/magazine/i-am-disabled-on-identity-first-versus-people-first-language/

Madaus, J. (2005). Navigating the College Transition Maze: A Guide for Students With Learning Disabilities. COUNCIL FOR EXCEPTIONAL CHILDREN, 32-37.

NYLN, & KASA. (2016). Respectful Disability Language: Here’s What’s Up! Retrieved April 27, 2017, from Disabilityinfo.org: https://www.disabilityinfo.org/mnip/db/fsl/FactSheet.aspx?id=77

Sequenzia, A. (2016). Person First Langauge and Ableism. Retrieved April 27, 2017, from Ollibean: https://ollibean.com/person-first-language-and-ableism/

Snow, K. (2005). To Ensure Inclusion, Freedom, and Respect for all, we must use People First Language. Retrieved April 28, 2017, from Disability is Natural: https://nebula.wsimg.com/1c1af57f9319dbf909ec52462367fa88?AccessKeyId=9D6F6082FE5EE52C3DC6&disposition=0&alloworigin=1

Titchkosky, T. (2001). Disability: A Rose by Any Other Name? “People‐First” Language in Canadian Society*. Canadian Review of Sociology/Revue canadienne de sociologie, 17.