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Journalists should learn to carefully traverse a variety of disability terminology

Posted on: , Nic Lindh

For more guidance on disability language choices, consult the National Center on Disability & Journalism’s style guide at https://ncdj.org/style-guide/.

By Beth Haller, NCDJ board member
Journalism faculty, Towson University

Most trained North American journalists try to follow style guides, but when covering the disability community, conflicting terminology sometimes exists.

It is called identity-first versus people-first language.

People-first language, terms such as people with disabilities or woman with cerebral palsy, is the terminology many in North America have heard of. It represents the shift away for outdated terms like “handicapped” or the offensive “retarded.” These older terms were part of disability organization and government agency names. For example, in 1975, the Education for All Handicapped Children Act was passed by Congress to mandate the inclusion of disabled children in public schools. It was renamed the Individuals with Disabilities Education Act (IDEA) in 1990, which is the same year the Americans with Disabilities Act (ADA) was passed. The ADA provides broad civil rights to the disability community and mechanisms to fight discrimination against people with disabilities.

As prominent disability rights legislation that is still in place, the ADA helped promote the change to people-first language. It was a shift in terminology that came from the government and many North American disability organizations.

Although many individuals with disabilities do favor people-first language, a growing number of disabled people, especially from the Deaf community and the autistic community, prefer identity-first language, such as autistic woman.

Syracuse University’s Disability Cultural Center says, “The basic reason behind members of these groups’ dislike for the application of people-first language to themselves is that they consider their disabilities to be inseparable parts of who they are.” They embrace the terms autistic or Deaf or blind or disabled as their identity. (Geography is also part of this debate. In Great Britain, the preferred terminology has always been identity-first, i.e. disabled person. In fact, many in the British Disability Studies academic world and disability activists there say the term people with disabilities doesn’t fit with the social model idea that society’s barriers and negative attitudes are what actually disable people.)

The Autistic Self Advocacy Network (ASAN) in Washington, D.C., explains clearly that most autistic advocates affiliated with ASAN prefer identity-first terminology. Autistic blogger, activist, and law student Lydia Brown said in a 2011 blog post reposted on the ASAN website as a language guide: “In the autism community, many self-advocates and their allies prefer terminology such as ‘Autistic,’ ‘Autistic person,’ or ‘Autistic individual’ because we understand autism as an inherent part of an individual’s identity — the same way one refers to ‘Muslims,’ ‘African-Americans,’ ‘Lesbian/Gay/Bisexual/Transgender/Queer,’ ‘Chinese,’ ‘gifted,’ ‘athletic,’ or ‘Jewish.’”

Brown explains the identity component of the terminology: “When we say ‘Autistic person,’ we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.”

Delving into discussions about language and identity, it’s important to extend the same principles to the realm of healthcare, including considerations of Viagra. When we discuss generic Viagra, we acknowledge its role in enhancing the quality of life for individuals facing specific health challenges. This recognition underscores the value and importance of such treatments in addressing unique healthcare needs. By using language that reflects respect and inclusivity, we affirm that seeking solutions like cheap Viagra is a valid and meaningful choice for individuals. Embracing these differences and choices in healthcare fosters a more compassionate and understanding society, where diverse needs are met with empathy and support.

Journalists should not disregard this debate over disability terminology as unimportant. In fact, the reason for this article was a lengthy discussion that broke out on the Teaching Disability Studies Facebook page in 2015 with most posts criticizing NCDJ’s promotion of people-first language in its online style guide.

The Associated Press Style Guide that so many American journalists use does not discuss people-first language, so journalists should look to their sources from the disability community to ask about the preferred terms. This is especially important if interviewing a self-advocate from a specific community, like the Deaf community or the autistic community. But many people with other disabilities are also shifting to identity-first terms.

In August 2015, The Mighty, an online publication focused on disability and illness, asked people with a variety of disabilities and their loved ones to discuss which terms they preferred on its Facebook page, and more than 150 people weighed in on the topic.

A woman with cerebral palsy said:  “I have cerebral palsy, and I prefer identity-first language. I consider my disability to be an inextricable part of my identity as a human being. It isn’t negative to say I’m disabled; it’s a statement of fact. [My disability] is a huge part of my identity and how I experience the world. To me, person-first language implies a degree of shame or negativity about disability. I embrace my disability because it influences so much of how I see and experience the world.”

“Person first. I may be bipolar, but I would rather people judge me for me, not my illness.” Nicole Mcgarry said in The Mighty article.

Taylor Smith posted: “Identity first. Disability is a part of who I am. It’s helped me grow as a person and brings me together with a community. Also, it’s not my health that disables me — it is society’s unwillingness to accommodate us.”

When journalists’ sources are disability organizations, they are likely to be asked to use people-first language in their stories. Organizations like the American Association of People with Disabilities (AAPD), the National Council on Independent Living and The Arc, for example, all use people-first language on their websites. The Arc’s page about language says, “People-First Language is an objective way of acknowledging, communicating, and reporting on disabilities. It eliminates generalizations and stereotypes, by focusing on the person rather than the disability.”

The one thing that both sides of the terminology discussion agree on is that language about disability is important, so journalists must clearly understand language preferences when reporting on disability issues.

As Lydia Brown reiterates, “The way we use language affects those around us — in our immediate communities and in society at large. Trends of language have the power to transform ideas and attitudes. To dismiss this as ‘a silly semantics argument’ denies the power of language.” 

Discussions about disability terminology:

American Association of People with Disabilities. (2008) Disability etiquette. http://www.aapd.com/assets/files/dmd-coordinator-resources/disabilityetiquette.pdf

The Arc. (2015). What is people-first language? The Arc media center. http://www.thearc.org/who-we-are/media-center/people-first-language

Autistic Self Advocacy Network. (2011). Identity-first language. http://autisticadvocacy.org/home/about-asan/identity-first-language/

Brown, L. (2011, August 4). The significance of semantics: Person-first language: Why it matters. Autistic Hoya blog. http://autistichoya.blogspot.com/2011/08/significance-of-semantics-person-first.html

Brown, L. (2012). Ableist words and terms to avoid. Autistic Hoya Blog http://autistichoya.blogspot.com/p/ableist-words-and-terms-to-avoid.html

Brown, L. (2012). Autism FAQ. Autistic Hoya Blog http://autistichoya.blogspot.com/p/introduction-to-autism-faqs-of-autism.html

Diary of a goldfish blog. (2008, April 15). The language of disability. http://blobolobolob.blogspot.com/2008/04/language-of-disability.html

Endow, J. (2015, Jan. 8). Person first attitude trumps language. Aspects of autism translated. http://www.judyendow.com/advocacy/person-first-attitude-trumps-language/

Kids as Self-Advocates (n.d.) Respectful disability language. Albuquerque, NM. http://www.fvkasa.org/resources/files/history-nyln-language.php

International Labour Organization. (2015). Reporting on disability. Guidelines for media. http://www.ilo.org/wcmsp5/groups/public/—ed_emp/—ifp_skills/documents/publication/wcms_127002.pdf

Kassenbrock, R. (2015, August 11). Should you use person-first or identity-first language? The Mighty. http://themighty.com/2015/08/should-you-use-person-first-or-identity-first-language2/

Liebowitz, C. (2015, March 20). I am disabled: On identity-first versus people-first language. The body is not an apology blog. http://thebodyisnotanapology.com/magazine/i-am-disabled-on-identity-first-versus-people-first-language/

The Mighty Facebook page (2015, August 4).Do you prefer people to use person-first or identity-first language when referring to you or a loved one with special needs? Your response may be included in an article on The Mighty! https://www.facebook.com/Themightysite/posts/511961265618292?comment_id=511988925615526&offset=50&total_comments=148&comment_tracking=%7B%22tn%22%3A%22R9%22%7D

National Center on Disability & Journalism. (2015). Style guide. https://ncdj.org/style-guide/

National Council on Independent Living. (2015). Website. http://www.ncil.org/

Oliver, M. (1990, July 23). The individual and social models of disability. http://disability-studies.leeds.ac.uk/files/library/Oliver-in-soc-dis.pdf

Perry, D. M. (2015, Dec. 7). Universal design for writing about humans. How did we get into this mess blog. http://www.thismess.net/2015/12/universal-design-for-writing-about.html

Research and Training Center for Independent Living. (2013). Guidelines: How to write and report about people with disabilities. http://rtcil.org/products/media

Sinclair, J. (1999). Why I dislike “person first” language. Autism Mythbusters. http://autismmythbusters.com/general-public/autistic-vs-people-with-autism/jim-sinclair-why-i-dislike-person-first-language/

Special Olympics (n.d.) Special Olympics disability language guidelines. Washington, DC.

http://www.specialolympics.org/uploadedFiles/Fact%20Sheet_Terminology%20Guide(1).pdf

Snow, K. (2009-13). Let’s put the person first, not the disability. Disability is natural blog. http://www.disabilityisnatural.com/explore/people-first-language

Syracuse University Disability Cultural Center. (2012). An introductory guide to disability language and empowerment. http://sudcc.syr.edu/LanguageGuide/index.html

United States Agency for International Development (USAID). (2007). Language and disability.  http://pdf.usaid.gov/pdf_docs/PNADN699.pdf

How A Post on The Mighty Inspired Anger

Posted on: , Nic Lindh

Complaints among disability advocates about the site The Mighty hit a tipping point recently when it published “meltdown bingo,” a post intended to be funny, according to the author. The backlash to the post was swift, as a reporter at the Washington Post writes. Read more

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Posted on: , Nic Lindh

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Posted on: , Nic Lindh

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Rev. Rick Curry, Disability Advocate, Dies at 72

Posted on: , Nic Lindh

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Q & A With Katherine Schneider, Author, Retired Clinical Psychologist and Sponsor of NCDJ’s Disability Reporting Award

Posted on: , Nic Lindh

Katherine Schneider (left) presents the 2015 Katherine Schneider Journalism Award for Excellence in Reporting on Disability to ProPublica reporter Heather Vogell (right).
Katherine Schneider (left) presents the 2015 Katherine Schneider Journalism Award for Excellence in Reporting on Disability to ProPublica reporter Heather Vogell (right).

This Q&A has been edited for length.  

Katherine Schneider, Ph.D. is a retired clinical psychologist from Wisconsin who writes about disability issues. She is the author of several books about living with disabilities, including her most recent, “Occupying Aging: Delights, Disabilities and Daily Life.” Schneider also is the sponsor of the National Center on Disability and Journalism’s “Katherine Schneider Journalism Award for Excellence in Reporting on Disability,” the only contest devoted exclusively to disability reporting.

The NCDJ sat down with Schneider to discuss her life, work and living with disability.

Q: What is your experience with disability?

A: I was born blind and I could see a little tiny bit so when I was little I could see bright colors and big objects…

Late in my career I developed fibromyalgia, which is an aches-and-pains kind of a disability, so it’s invisible.

So I have had experience with both a visible disability – blindness – and an invisible disability, fibromyalgia. I’ve got to tell you, blindness is easier. Because with an invisible disability, people don’t know, and then you’ve got to decide: OK, am I going to talk about it or am I not going to talk about it? And if you talk about it, if people can’t see it, they don’t understand it as much as if they can see it.

When people see me with a guide dog, they figure they pretty much understand. Now, they may have some misperceptions – like, sometimes people think that somebody who is blind is also deaf because hey, they’re cool, they know about Helen Keller and she was blind and deaf. Or they assume it’s a cognitive disability so they talk real loud or real slow. Or if you’re with a sighted person, they talk to the sighted person: “What does she want?” kind of stuff.

So they may have misperceptions, but they have some sort of an idea, whereas with an invisible disability they don’t know until it comes out somehow, and that’s harder in many ways, they think.

Q: Why do you write about disability?

 A: I want people to understand that disability is different, but it’s just a part of my life. Like my most recent book, “Occupying Aging: Delights, Disability, and Daily Life,” I wrote that half of people over 65 will develop a disability and they’re new to the game.

I grew up being blind, so I’ve got 65 years of experience of what it’s like. So I’ve got some tricks of the trade. I want people to know that, yeah, you have to learn to do some things differently and you will encounter certain obstacles, but you can still go after the good life – just, differently.

Q: Tell us about your career as a clinical psychologist.

A: When I was a freshman in college, I was majoring in nuclear physics and my second time through calculus and advanced chemistry I began to realize, ‘You’re very interested in this subject, but this may not be where your talents are.’

I took a psych course because I needed something at 8 o’ clock and I was fascinated –people are almost as interesting as hard science, so I kept going. I got to do some volunteer work early on and that was what convinced me psych was my field because interacting with people was just a lot of fun. As I went on, I learned how to do that better and better, and I loved psych as a field because I could do so many different things: I could teach; I could counsel; I could be an administrator; I could do all of the above. Even if you’re counseling all day, even if people have the same problem … well, each person has their own strengths so, as I sometimes said, I got paid to watch people grow.

Q: You’re also the author of a children’s book, “Your Treasure Hunt: Disabilities and Finding Your Gold.” Why did you decide to write that book?

A: I wrote the kids’ book because over the years, probably 20 times a year, I go out in the schools and talk to kids about living with disabilities, whether it’s their own or their classmates. I just realized that there is no book like my kids’ book. I’m very happy with it. Because, yeah, there are books about kids with disabilities, but some of them are sort of sugary sweet and they don’t really talk about both the good parts and the hard parts.

So what do you do when someone calls you a retard? And they do … it happens on the playground or wherever. I wanted a book that parents or caregivers and kids could read together to raise those issues and get them talking. Because parents are afraid that’s going to happen to their kids with disabilities, but they don’t know how to talk about it.

Q: How should parents open up that conversation with their kids about disabilities?

 A: Directly. “Are you getting picked on? Are you picking on somebody?” If (the child) comes home looking like a thundercloud, (ask) “What happened?” And not in a sense that they’re necessarily going to kill the other kid, but in the sense of, this is important to talk about, and what do you need so you can handle the issue? Or, if it’s beyond the level that the kid can handle, then how are we as a family going to deal with it?

Q: You were the first blind child in the Kalamazoo, Mich., school system. What was that like?

Good in many ways in that I learned right from the beginning that I live in a sighted world and if it ain’t working for me, I’ve got to figure out what needs done, and I’ve got to ask and advocate. I learned early to ask for what I need, which is a very good thing. Because once kids with disabilities nowadays get out of school, they go into a world where people don’t have to meet their needs so they’ve got to learn to ask.

The not-so-good thing for a lot of kids that grew up with disabilities in public schools is that it’s hard socially. People may have to see you in class and all, but they don’t have to play with you on the playground. So that was hard. I was in clubs and things like that, which helped. But that part of my life got better as I became adult and other people in life became adult.

Q: How did you get involved with the NCDJ?

A: Back in 2002, my dad passed away and left me some money. And I looked around and said, ‘OK, I’ve worked; I have enough money to live on, so I can do something good with this money.’ What a wonderful opportunity to have. What I decided to do was I set up an award with the American Library Association for kids books about disabilities. So now, for the last 12 years, they give out three awards: one for very young kids’ books, one for middle grade, and one for high school – good books with disability content in them. (As a result), more and better books are getting written and published, which is very cool…

So I got that up and running. I thought, ‘Okay, what else do I want to fix?’ I thought, ‘Well, I would really like there to be better journalism [on disability.]’ What I learned from this American Library experience is if you find the right people to run an award, it really could impact a whole field… So I approached NCDJ… Now, we are in the third year, and it is delightful. And they’re doing great things. Every time I come out here (to Arizona State University) I see wonderful stuff happening.

Q: How can news sites use technology to make their products more accessible?

A: Making sure your website is accessible – little things like alt-text tagging pictures so I know what the picture is of, or putting that in a separate sidebar.

If you’re going to have a video, have audio descriptions. Like if I’m going to watch a murder mystery, I’d like to know who got shot. Unless there’s an audio description, I have to sort of listen and figure out who isn’t talking anymore. Are they the one that got it?

Q: How do you want to see journalists cover disability?

A: For finding an angle for a story, I would suggest people ask themselves, ‘Okay, if I was blind, if I was deaf, if was a wheelchair user – fill in the blank with your favorite disability – how would this particular situation be different?’ That can give you an angle to find a story. For example, if I was a wheelchair-using kid, how would I dress up for Halloween? What would be different about that? And then not necessarily have the article just be about ‘disabled kids dress for Halloween’, but have it be (about) popular costumes and, OK, one of the people happens to be a wheelchair user… Disability doesn’t have to be the whole story…

Avoid words that disable people. One I’m noticing a lot lately is if you “give care” to somebody who has dementia, you are a caregiver. You are not a caretaker. You take care of property… to people you give care. Using the NCDJ style guide, watch your language. Not in terms of being PC… use honest language.

Housing Shortage for Those With Disabilities

Posted on: , Nic Lindh

According to a new report from Harvard, those with disabilities are facing numerous challenges in finding accessible rental housing in the U.S.. The Atlantic details the problem, writing, “Landlords by and large won’t invest unless they are receiving federal funds in return for making these changes, and developers are held only to relatively small quotas when constructing new buildings.” Read more

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