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Inclusive language continues to evolve

Health care professionals strive to use the most inclusive language possible, but it is an ever-changing matter, as Caanen Churukha, program manager of disability and inclusion, recently found out.

After publication of a story on disability etiquette in a newsletter distributed by the Penn State Health Office for Diversity, Equity and Inclusion, Churukha heard concerns about his recommendations on inclusive language for those on the autism spectrum.

“The concern was specifically with my suggestion to use person-first language (PFL) instead of identity-first language (IFL),” he said. “Using PFL, one would say, ‘a person with autism,’ but someone using IFL would say, ‘autistic person.’”

Initially, Churukha said he was confused because, as a professional working with adults with intellectual and developmental disabilities, he was taught to use PFL and always had.

“To me, IFL was a tool for dehumanizing others, a way to reduce a person to nothing more than one aspect of themselves,” he said. “However, since my initial training, the conversation has changed, I learned.”

For additional insight, Churukha reached out to The Arc of Pennsylvania, which is the leading advocacy organization in the state for people with intellectual and developmental disabilities.

Both Jessica Capitani, president of The Arc of Pennsylvania board of directors, and Sherri Landis, executive director, suggested the best approach is to ask those with intellectual and developmental disabilities for their preferred language, and go with that.

“Jessica told me that some people get concerned that they are going to offend, but she feels that if you approach it in an honest way, people will appreciate that,” Churukha said.

The “just ask” option was further supported by an article Churukha read from the Children’s Hospital of Philadelphia Center for Autism Research. A survey of 3,500 autistic individuals, their families, caregivers and helping professionals revealed that the term “autistic” was preferred by the majority of adults on the spectrum, while “person with autism” was the preferred language of professionals.

Churukha said he realizes his perspective on the use of inclusive language is but one of several.

“Inclusion is recognizing that every perspective is valid and inextricably rooted in history, lived experience and our own individual stories,” he said. “What matters most is that we validate each other by taking the time to ask about, understand and use the language that most accurately reflects how people view themselves.”

He said he plans to make some adjustments to the educational materials he regularly puts together and mind his own choice of words going forward.

Lynette Chappell-Williams, vice president and chief diversity officer for Penn State Health, said the constructive feedback to the original article is appreciated and opens the door for meaningful dialogue.

“Words hold a lot of power, so it’s both important and enlightening to hear each other’s perspectives,” she said. “That way, we all can grow more proficient in relating to each other in ways that are comfortable, supportive and empowering.”

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