Why We Must Promote Respectful Language for People with Physical Differences

As an ethical storyteller, it’s my job to share people’s own experiences in a way that would make them proud when they see it. That’s me on the right, preparing to interview a patient in Ghana.

I’m experiencing some cognitive dissonance here.

Take a look at the following two health awareness months:

  • National Cleft and Craniofacial Awareness and Prevention Month
  • National Birth Defects Awareness Month

Both are rallying support to spread attention and recognition around congenital conditions. Yet, the first leaves me feeling more inclined to wrap my arms around it. While my initial reaction to the second is to raise a skeptical eyebrow.

As the managing editor of a nonprofit organization that specializes in treating cleft lip and cleft palate in places of need around the world, Operation Smile, one would think that I would fully embrace an opportunity to shed light on a subject into which I focus my passion and profession.

I’ve learned through my training and experience as a journalist that placing subjective labels on people can damage their dignity and sense of worth. I believe in the moral and ethical obligation to gather as much insight as possible from the people I’m covering, which honors how they perceive and construct their own realities.

In other words, I’m hyper-aware of the power wielded by our words; they can inspire and build as much as they can deject and destroy.

Every time January rolls around as “National Birth Defects Awareness Month,” my heart sinks each time I read or hear the term “birth defect,” even more than when other journalists default to this phrasing throughout the year.

“National Birth Defects Awareness Month” is carried out with the purest intentions at heart, and by no means am I diminishing the efforts of the advocates who support the millions of people who are born with congenital conditions. The communities they build, resources they provide and the ethos of helping people realize brighter futures are to be recognized, supported and sustained.

However, I know that we can do a better job of talking about our differences — especially people, like me, who work in the language of disability but were not born with one.

Let’s consider the definition of “defect.” Merriam-Webster defines “defect” as “a physical problem that causes something to be less valuable, effective, healthy, etc.” and “something that causes weakness or failure.”

Hold up.

Problem? Less valuable? Weakness? Failure? Are any of these words that we should be using to describe a condition that expresses itself outside of a person’s control — let alone the fact that they feed into the universal lie that someone is “lesser-than” another?

Now let’s consider how the Center for Disease Control and Prevention’s (CDC) defines “birth defect:” They are “structural changes present at birth that can affect almost any part of parts of the body (e.g., heart, brain, foot). They may affect how the body looks, works, or both …”

We’re getting warmer.

Although the CDC uses the term that I’m bringing into question, its definition is much closer to being objective. While I understand the need to create understanding in the minds of people who haven’t experienced disability, these explanations should come from places of heightened empathy and deeper understanding.

The fact is that every human being is different than the other. In this case, these physical differences are starker than those we perceive as “normal” (another word that leaves much to be desired) such as a person’s weight, height, etc.

There’s research showing evidence that use of this language can be damaging. A 2012 article published by the National Birth Defects Prevention Network, the originators of this very awareness month, provides valuable insight into how this term is perceived by members of the community affected by congenital conditions.

While the largest proportion, albeit a large minority, of respondents who were asked about their preference of terminology associated with such differences said that “birth defects” was their first preferred term (35.4%), the study only asked 11.5% of people personally affected by congenital conditions what they thought about the use of that term.

Unsurprisingly, “their responses differed statistically from nonaffected respondents,” but the leading choice were still ‘birth defects’” at 28.5%. The conclusion of this study was that “participants affected by birth defects responded less positively to the term. Continued dialogue about accepted and appropriate terminology is necessary.”

This tepid recommendation underscores my earlier point: If we are to write more accurate and kinder stories about people living with congenital conditions, then their voices not only need to be heard, but they should also be leading the conversation. I can’t help but wonder if there was a term that wasn’t listed among the options that they would have better preferred.

As a member of the community of people affected by congenital conditions (my preferred terminology) — my niece was born with a limb difference of her right hand — I’m part of the vast majority of people who feel there is a better way to talk about physical differences.

The National Center on Disability and Journalism provides a perspective that I feel is much closer to how people who work in media should approach this term.

On “birth defects,” it recommends that writers and editors “avoid using ‘defect’ or ‘defective’ when describing a disability. Instead, state the nature of the disability of injury.” It also advises that “many people consider ‘defect’ and other forms of the term offensive when describing a disability as they imply the person is deficient or inferior to others.”

Now we’re getting even warmer.

While not everyone shares the same views, listening to varying perspectives is critical to how we shift our use of language when describing people and communities affected by such differences. We can at least start with options that don’t feel as incredibly disrespectful and devoid of compassion.

When I spend time with my niece, I observe how efficiently that she uses her limbs. With the help of a handful of occupational therapy sessions and her own intuition, she’s able to enjoy nearly all of things that 7-year-olds do: video games, books, sports and so much more.

It’s her “normal.” And her “normal” is different than my “normal” and both are different than your “normal.”

Furthermore, I question if she is disabled at all.

I know that her limb difference doesn’t cause her weakness or failure, nor does it devalue her as a human being.

I talked to my sister, her mother, about how she’s been able to adapt to using her affected limb so effectively, and she told me that sometimes she forgets that her daughter was born with a right hand that’s different from both of ours. Of course, occasionally, we need to step in and help with certain tasks, but we both wholeheartedly agree:

Her condition is anything but a “defect.”

As the Managing Editor for Operation Smile, John Streit helps to shape the organization’s brand expression to support its mission and fuel fundraising for its programs.

--

--

--

Through our expertise in treating cleft lip and cleft palate, we create solutions that deliver safe surgery to people where it’s needed most. operationsmile.org

Love podcasts or audiobooks? Learn on the go with our new app.

Recommended from Medium

Christian Drug and Alcohol Treatment Centers Blairstown NJ (855) 419–8366 Alcohol Recovery Rehab

The Rewards and Sacrifices of Becoming an Emergency Dental Practice

Christian Drug and Alcohol Treatment Centers Blawenburg NJ (855) 419–8366 Alcohol Recovery Rehab

Population Growth: What is the total fertility rate of a country?

The fertility rate by country

The changing digital health landscape

The next generation of precision medicine

Do You Need To Drink 8 Glasses Of Water a Day?

A Four Year Reflection on a Cancer Blog | A Ballsy Sense of Tumor

Get the Medium app

A button that says 'Download on the App Store', and if clicked it will lead you to the iOS App store
A button that says 'Get it on, Google Play', and if clicked it will lead you to the Google Play store
Operation Smile

Operation Smile

Through our expertise in treating cleft lip and cleft palate, we create solutions that deliver safe surgery to people where it’s needed most. operationsmile.org

More from Medium

The McDonald’s Incident

image of a burger and friends

10 questions with Chris Troy, Drums in the Trackd House band

Copy Editing and Environmentalism: How to Avoid Greenwashing

10 (more!) educational podcasts for curious kids