language

Romanian mother resolves to change disability language in her country

By Jenna Miller

Nine years ago when Ruxandra Mateescu’s daughter, Olga, was born with special needs, she was stunned at the lack of information and the gaps in care.

“When Olga was born I tried to look up with Google what retarded means because the doctor said when she grew up she would be retarded or maybe dead or a vegetable. He used words like that,” Mateescu said in a Skype interview.

Mateescu lives in Bucharest, the capital city of Romania and is fluent in both English and Romanian. People with disabilities don’t have many rights in Romania, and much of the public is uninformed about disability issues, “like the fifties in the United States,” she said.

In addition, the Romanian health care system is difficult to navigate, Mateescu said, and she couldn’t figure out where to go to get more information about her child. Even after nine years and many doctors visits, Olga has never had an official diagnosis to classify her disability.

A journalist who worked for a parenting website, Mateescu did what came to her naturally: She started blogging about her daughter, their lives and the struggles she faced trying to find information and support. Other parents responded and asked her to keep writing. She now runs a website that features stories of people with disabilities and their families.

“I started writing when I was very angry, so my writing was very angry on everybody,” she said. “Many of them [other parents] told me that I was courageous… I don’t know.”

Mateescu said it was taboo in her country to even talk about disabilities when she started her blog, but the situation is slowly improving. Now there are more blogs devoted to the subject and mainstream media also has begun to show interest. However, Mateescu calls most of the reporting shallow and says the focus is “on the pity element.” Pejorative language and offensive terms are still common in mainstream news both on television and in newspapers.

“If experienced journalists are doing that, they don’t realize that it is wrong,” she said “Somebody has to say, it’s not okay– this is how you do it.”

One day Mateescu was searching the internet for resources on disability issues and she happened upon the National Center on Disability and Journalism’s style guide, which provides guidance on words and terms related to disability. She thought it would be a great help to journalists and communicators in her country, but there was a problem: The English language guide would have to be translated into Romanian.

She started by sending an email to the center at Arizona State University asking for permission to undertake a translation. “I wrote and I said, ‘Well, they will never answer back they are huge,’ and I received the email one morning, and I was like ‘Wow, they answered.’ We are not used to that reaction of kindness.”

Across the world in Phoenix, Arizona, NCDJ Director Kristin Gilger said she had long hoped to have the guide, which contains almost 100 words and terms, translated into other languages. She immediately said yes.

Mateescu then put out a call on social media for help. Seven volunteers responded — friends, relatives and even an English teacher who happened to be her manicurist’s husband. Together they combed through the guide. Some words didn’t translate or didn’t exist in Romanian. For those, the group did their best to supply the closest Romanian approximation. They worked quickly. It took one week to translate the guide and another to check it and get it ready for publication.

Once completed, Mateescu tried to get the style guide out to as many people as possible by posting it on her website and on social media. She said she immediately starting getting “likes” and “shares.” She is now setting up meetings with journalists and parents to discuss the guide and advocate for its use by Romanian journalists.

Along with improvements in language, Mateescu hopes to see more investigative stories about the lack of support and infrastructure for people with disabilities in her country. According to a report compiled by the Academic Network of European Disability Experts, 24 percent of children with disabilities in Romania are not registered for any form of education. The 24 percent includes Mateescu’s daughter, Olga.

The situation isn’t much better for adults with disabilities. The same report shows that fewer than 16 percent of people with disabilities are employed. It is common for people to stop and stare at people with visible disabilities in public. And Mateescu says it’s almost impossible for people with physical disabilities to get around her home city of Bucharest. Many public buildings, busses and metro stations don’t have elevators or ramps, and most homes are difficult to get into and out of for those using wheelchairs.

Mateescu says it is painful to think about the challenges her daughter will face when she grows up, but she tries to focus on fighting for the things she can change.

“I don’t know if my daughter will have some benefits from that, but, for sure, the next generation of parents will be much better off than my generation is now,” she said.

NCDJ featured in CJR article on tips for covering disability beat

Wendy Lu from the Columbia Journalism Review interviewed NCDJ Director Kristin Gilger about this site’s advice for covering disability beats. Some top recommendations include being wary of “inspiration porn” and avoiding words that “assume a negative relationship between people and their disabilities (e.g. wheelchair-bound).” Check out more tips from the article by clicking HERE.

Journalists should learn to carefully traverse a variety of disability terminology

For more guidance on disability language choices, consult the National Center on Disability & Journalism’s style guide at http://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.”

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. http://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

Terms to Avoid When Writing About Disability

NCDJ is publishing this list in conjunction with an updated style guide intended for journalists and members of the general public who are seeking the appropriate and accurate language to use when writing or talking about people living with disabilities.

What is considered acceptable language regarding disabilities has changed dramatically over time, and standards continue to adapt as understanding and perceptions evolve. Many of the terms below were once widely used and were not always considered offensive, but now are widely considered to imply inferiority or have other negative connotations. Others are outdated medical or colloquial term

Here are a few terms to avoid:

Abnormal: Inappropriate when used to describe an individual. See entry on abnormal.

Afflicted with: Implies that a person with a disability is suffering or has a reduced quality of life. See entry on afflicted.

Able-bodied: Refers to a person who does not have a disability. The term implies that all people with disabilities lack “able bodies” or the ability to use their bodies well. See able-bodied entry. 

Confined to a wheelchair: Describes a person only in relationship to a piece of equipment designed to liberate rather than confine. See wheelchair entry.

Crazy, insane, nuts, psycho: All are considered offensive and should not be used except in direct quotes. See mental health. 

Deaf and dumb/deaf-mute: Avoid these terms as they are often used inaccurately and can be offensive. See deaf and dumb/deaf-mute entry.

Defect, birth defect, defective: Avoid these terms when describing a disability because they imply the person is somehow incomplete or sub-par. See entry on congenital disability.

Demented, senile: Avoid describing someone as being demented or senile. Use people-first language when describing someone with dementia, such as “a person with dementia.” See entry on dementia/senility.

Epileptic fit: The term seizure is preferred when referring to the brief manifestation of symptoms common among those with epilepsy. Avoid stating that the person had a fit or an epileptic fit. See entry on epilepsy/epileptic fit.

Loony, loony bin, lunatic: All are considered offensive and should not be used except in direct quotes. See mental health entry.

Mentally retarded: Always try to specify the type of disability being referenced. Otherwise, the terms mental disability, intellectual disability and developmental disability are acceptable. See entry on mentally retarded/mentally disabled, intellectually disabled, developmentally disabled.

Midget: The term was used in the past to describe an unusually short and proportionate person. It is now widely considered derogatory. See entry on Dwarf/little person/midget/short stature.

Paraplegic: Avoid referring to an individual as a paraplegic. Instead, say the person has paraplegia. See entry on paraplegia/paraplegic.

Psychotic: Avoid using psychotic to describe a person; instead refer to a person as having a psychotic condition or psychosis. See entry on psychotic/psychosis.

Quadriplegic: Use people-first language, such as “a person with quadriplegia” rather than quadriplegic, See entry on quadriplegia/quadriplegic/tetraplegia.

Schizophrenic: Use people-first language, stating that someone is “a person with schizophrenia” or “a person diagnosed with schizophrenia” rather than a schizophrenic or a schizophrenic person. See entry on Schizophrenia/schizophrenic.

Spastic or a spaz. It is acceptable to refer to someone as having spastic cerebral palsy, but it is derogatory to refer to someone as spastic or a spaz. See entry on cerebral palsy. 

Stricken with, suffers from, victim of: These terms carry the assumption that a person with a disability is suffering or has a reduced quality of life. See entry on afflicted with

Vegetable: Use people-first language, such as “a person in a vegetative state.” Avoid referring to someone as a vegetable or “veg” as such words dehumanize the person. See entry on vegetative state/comatose/non-responsive.

NPR

What’s In A Label? In Special Ed, Words Matter

Reporting on disability can be akin to walking through a minefield, carefully avoiding certain terms but inadvertently using others that backfire. As part of a running segment on special education, NPR’s Steve Drummond spoke with NCDJ director Kristin Gilger about how journalists should refer to students with disabilities and to the disabilities themselves. Gilger referenced the NCDJ’s style guide, which gives recommendations but also admits that there’s little uniform terminology when referencing people with disabilities. Gilger said, “our advice to journalists it to ask the person you’re interviewing.”

The NCDJ style guide is currently undergoing an update. We hope to have it up by the end of this year. Read more.