Note: This article refers to person-first and people-first language interchangeably. This language is also referred to as person-centered or people-centered language in some texts. This article examines the reasons for the person-first language movement regarding the disabled, whether or not the reasons are scientifically sound, and looks at how those within disabled communities feel about it.
Introduction
Language is constantly changing. Words fall out of favor due to pop culture references or we learn things we did not know and realize that the words we were using cause hurt to people. Never is this more apparent than with the disability community. The way disabled people have been viewed since the turn of the 20th Century has gone through many changes so must the language. A prime example of this is how we refer to people with disabilities. There are two ways we can identify people when we speak about them, person-first, or identity first. For example, the term “person with autism” puts the person first. The term “an autistic person,” makes the autism their identity. Since the late 1970s, there has been a push in the United States to use person-first language when referring to people with disabilities.
Some History Regarding Person-First Language
In order to understand why there was a people-first movement in the 1970s, we must take a look back at the history of the disabled in the United States. In his paper, Riding the Third Wave 1Wehmeyer, M., Bersani, H., Jr., & Gagne, R. (2000). Riding the third wave: Self-determination and self-advocacy in the 21st century. Focus on Autism and Other Developmental Disabilities, 15(2), 106–115. , Michael Wehmeyer breaks down the disability movement and self-advocacy into three waves.
During the early 1900s, what Wehmeyer calls the first wave, professionals were at the helm. Parents were told what to do with regard to their children. People with mental disabilities were feared and were thought to be associated with poverty, promiscuity, and crime. The mid-1900s, with its vaccines and soldiers coming home from war, was a time of hope. This was the second wave.
With the Baby Boom, of course, came more children, and with more children overall, there were more children with disabilities. Parents formed advocacy groups and families began to make the care decisions involving their children. The third wave formed when these children grew into adults. They took the helm of their own life decisions. In October of 1974, the first self-advocacy conference took place in Salem, Oregon2http://peoplefirstwv.org/old-front/history-of-people-first/. At this conference, Ms. Valerie Schaaf, consciously or not, introduced the people-first concept to the world by saying we should “…label jars, label streets, but don’t label persons.”
The Argument for Person-First Language
According to the Laguna Shores Recovery site, people-first language:
- Fosters an Environment of Dignity, Respect, and Hope– Person-first language is more accurate when describing people with disabilities and placing the person first is helpful in eliminating stereotypes and influence our impressions of them in a positive way.
- Reduces Stigma– Describing someone in terms of their disorder and not first recognizing them as a person can be stigmatizing and lower their self-esteem.
Kathie Snow from Disability Is Natural 3https://www.disabilityisnatural.com/people-first-language.htm points out the importance of language in identifying groups, “The first way to devalue someone is through language, by using words or labels to identify a person/group as ‘less-than,’ as ‘the other,’ ‘not like us,’ and so forth. Once a person/group has been identified this way, it makes it easier to justify prejudice and discrimination.” She says that people-first language makes the distinction between what a person has and who a person is 4http://www.inclusioncollaborative.org/docs/Person-First-Language-Article_Kathie_Snow.pdf We are not “myopic,” we are someone who wears glasses. We are not “cancerous,” we are someone who has cancer. In order for people with disabilities to gain respect in our society, we must stop using language that devalues them.
So… You’re Telling Me to Use Person-First Language No Matter What??!
Through the eighties and nineties, people-first language was thrust into the mainstream. Teachers were taught people-first language from presentations that were funded through government grants. It was put into the curriculum for our children to learn5Froschl, M., & Others, A. (1984) Including All of Us: An Early Childhood Curriculum about Disability. Educational Equity Concepts, 440 Park Ave. South, New York, NY 10016. Retrieved from http://eric.ed.gov/?id=ED260523., taught to our healthcare providers, and put on the internet to instruct the general public.
People learned through public service announcements that if they used identity-first language, they were stripping someone of their dignity, taking their hope away, insulting them, being disrespectful, and stigmatizing them. This put people on alert. Not only did they change their language, they began to correct other people. Sometimes, they would even correct the person with the disability or condition.
Alex Kapitan, of the Radical Copyeditor Blog, speaks of a time when he used the term “transgender people” in his blog to refer to the transgender community. Alex, who is transgender, received an email from someone who he believes was not transgender, correcting him. “The appropriate term is ‘people who identify as transgender,'” she informed him. A stunned Alex could not understand why this person, who was not transgender, would feel comfortable telling a transgender person how to refer to themselves and their community. He says he then remembered “person-first language.”
The Argument for Identity-First Language
There is evidence that person-first language increases stigma. An article published in the Journal of Child Psychology and Psychiatry argues that the entire purpose of person-first language is to level and equalize, “to correct for the past, in which persons with disabilities were labeled differently than persons without disabilities…” If this is so, they argue, then why do we only use person-first language for children with disabilities and not typical children.
Their study showed that scholarly writing uses person-first language more frequently when referring to children with disabilities and identity-first language most frequently when referring to typically developing children. They also found person-first language occurred most frequently to refer to children with the most stigmatized conditions such as autism and intellectual disability when compared to conditions as deafness, blindness, and physical disability. Significantly, person-first language occurred at a rate of less than 1% when referring to children with giftedness, the least stigmatized condition, at a rate of less than 1%.
Dr. Kenneth St. Louis, of the Speech and Communication Disorders Department of West Virginia University studied person-first language as it relates to negative beliefs and attitudes. Dr. St. Louis found that participants regarded the terms “person with leprosy” and “person with psychosis” as opposed to “leper” and “psychotic,” as significantly more positive only 2% of the time. Similarly, there was no difference when using person-first labels for communication disorders such as “stutter” or “stammering”. Many agencies still require person-first language, even without documented evidence to support the claim that it reduces insensitivity or improves insensitivity. Sometimes, organizations call for these changes without consulting the members of the communities themselves.
The Blind Community
The March 2009 edition of the Braille Monitor reprinted a copy of a memorandum from the United States Department of Education in Washington D.C., to their staff. The memo called for care in avoiding expressions that “many persons find offensive”. It specifically suggested that people use the phrases “people who are blind” or “persons with a visual impairment” instead of ‘blind people.” It went on to advise staff to avoid “using phrases such as ‘the deaf’… or ‘the blind.” The problem, though, is that the blind and deaf communities do not wish to be addressed as such.
Mr. Kenneth Jergensen, the President of the National Federation of the Blind in the United States, in the same issue of the Braille Monitor, stated that the National Federation of the Blind objected to the language and thus passed a resolution that they planned to “distribute throughout the country and press for action on it.”
The resolution states euphemisms such as “people who are blind” and “persons who are blind” are harmless and not objectionable when used in ordinary speech but “totally unacceptable and pernicious” when a person must be put in front of blind only to convey that a blind person is a person. It concludes by saying, “We believe that it is respectable to be blind, and although we have no particular pride in the fact of our blindness, neither do we have any shame in it. To the extent that euphemisms are used to convey any other concept or image, we deplore such use…”
The Deaf Community
The Deaf community has its own way of identifying. It places a heavy emphasis on their culture. They use uppercase Deaf to indicate people who “have inherited their sign language, use it as a primary means of communication among themselves, and hold a set of beliefs about themselves and their connection to the larger society. ” Lowercase deaf indicates people who lost their hearing due to “illness, trauma or age; the delineation being the affiliation to the deaf culture. They denote people who are hard of hearing with HOH. Those people may or may not have an affiliation with the deaf community.
Blind and deaf people have rich cultures and beliefs. They have created their own identities through careful thought. I cannot imagine how it must feel to them for someone, with their own agenda, well-meaning or not, to come along and discard the agency they have exercised over themselves.
Parents of Children with Autism Regarding Identity Language
Within the autism community, there is a divide. Not all but many parents of children with autism prefer person-first language. Autistic adults often disagree with this point of view. The parents whose children have autism often do not see their children as “autistic.” They view the autism as separate. It really is impossible to explain here how deep this goes within each individual and within the autism community. When parents are planning for children, we plan for “typical” children. Everything changes when the child arrives “different,” regardless of how profound the difference is.
Mom of three daughters with autism, Kim Stagliano, also prefers person-first language. Her children will need total care for the rest of their lives 6https://www.huffpost.com/entry/autism-research_b_1926901. Regarding language that describes her children, Ms. Stagliano says7htttps://www.huffpost.com/entry/why-is-ohio-retarded-but_b_120021that she avoids using the term autistic when referring to her daughters. “I dislike calling my own kids autistic. It says so much, yet tells so little about them. They have autism. But autism is not who they are.”
The conflict between autistic adults and parents of children with autism over identity language is complex. Some parents who take care of profoundly autistic children and autistic adults who write blogs live different lives. Sometimes parents feel like autism is a condition and do not want their children identified by a condition. Finally, having a child who differs from the norm can be hard for any parent to accept. Why that parent would not want their child identified by the very thing that caused the difference is not hard to understand. If we listen though, we can understand why autistic people feel that their autism is who they are.
How Do Autistic Adults Feel About Person-First Language?
Jim Sinclair, autistic adult and co-founder of Autism Network International, shared his feelings in one of the oldest writings on the subject, originally published in 1999, entitled “Why I dislike person-first language8http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/OP1/html_1.” He said that saying he is a person with autism would be tantamount to saying he is a person with a purple shirt. His autism, however, is a part of him and cannot be separated. Mr. Sinclair’s second point is that we usually describe a person’s most central characteristics as adjectives. For example, we call people generous and extroverted. We do not say, “a person with generosity” or “a person with extroversion.” Autism, however, goes deeper than these traits. It is his very brain that is autistic and without it, he would not exist.
Lydia X.Z. Brown of The Autistic Hoya believes the word autistic is no different than any other descriptor, “But I am Autistic. I am also East Asian, Chinese, U.S. American, a person of faith, leftist, and genderqueer. These are not qualities or conditions that I have. They are part of who I am..”
So What Should I Do?
Most people do not think about these things every day. We just want to go through life not offending anyone. Much of what is in this post is probably new information and may feel confusing. Tara Haelle of the healthjournalism.org blog wrote a post on this topic. I will break it down here:
- There are no hard and fast rules except to ask the person how they want to be addressed.
- Person-first with diseases like diabetes, epilepsy, and obesity. So, by this tip, we would say, lady with diabetes, child with epilepsy, man with obesity instead of “diabetic,” “epileptic,” or “obese man”.
- With autism, deafness, and blindness, use identity-first. Avoid words like “hearing impaired” “because many Deaf people do not perceive their inability to hear as a deficit”.
- When speaking about children with autism, person first is the usual preference. but anytime it is possible, ask, ask, ask the person you are dealing with what they prefer.
Conclusion
People who have disabilities have come a long way in a very short time. This is a testament to their drive and determination, but also to their individual traits that drove the movement. Each person is unique. They see their disability through their own lens. I believe most people in society are good and view person-first language as protecting those we see as vulnerable.
This is all great news. It means that we are acting from a good place in our heart. We are doing things for the right reasons. When it comes to doing something for disabled communities though, it is important to tread lightly. Most importantly, I believe we should be clear that what we are doing is helpful, wanted, and evidence based.
