Humans first, disability second: Towards a responsible portrayal of disabled people in journalism.

By Rodrigo Pérez Ortega

A quick Google search for the words "overcoming" and "disability" delivered these two headlines:

"WATCH: Boy born without arms plays trumpet with his toes in school band"

"Inspiring mom has no lower body"

Isn’t it heart-warming?

The answer should be no. It is somehow enrooted deep in society that disabled people are brave just for doing everyday activities — like attending school, driving or buying groceries — and that they should be praised just for that. It becomes a tag that drags a lot of people into the prejudice that they are heroes for "overcoming" their conditions. An able person turns a disabled person into an object of inspiration.

Lizzie Wade, Julie Devaney,  Lydia X.Z. Brown, Rose Evelethv

Left to right: Lizzie Wade (organizer and moderator), Julie Devaney, Lydia X.Z. Brown, Rose Eveleth; photo by Rodrigo Pérez-Ortega

This phenomenon is called "inspiration porn" and the reason it exists is in part how the media portrays disability. We have a false idea that "being disabled is necessarily a horrible existence, that it’s suffering, affliction, devastating, tragic and that the appropriate response narratively as well as emotionally is one of pity, one of feeling bad for the person" said Lydia X.Z. Brown, an activist, writer, and speaker, during the panel "Against ableism: Writing about disability" on Saturday, Oct. 29, during ScienceWriters2016 in San Antonio, Tex.

This way of thinking is further encouraged by religious speech, social construct, and medical views.

It is wrongly thought that having a disability is a health problem that needs to be cured or fixed, either by medical intervention or therapy. When reporting on a condition, writers forget that human beings exist in multiple forms — they have different capacities, functionalities, and limitations — and fall into the pathology dichotomy: you’re either heathy or ill. And so, writers tend to forget the human experience of disabled people, often treating them as props in their own story. One common mistake is to ask their doctors about disabilities because they are considered "experts", but in most of the cases, the patients themselves are in fact, the experts on their own condition.

"Health journalism is essential for patients," said Julie Devaney, a patient activist and writer, since it raises awareness about a condition and leads to policy changes. However, most of the stories use a tragic narrative, fueled by an implicit bias, and do not accurately represent the experience of most patients.

Rose Eveleth, a freelance science journalist, confessed that she has made that mistake, but over time, she has learned to focus more on the persons’ experience and not the disability itself, and she emphasized that it is important to always ask patients how they want to be portrayed.

When writing about a disability, reporters should talk with several patients and activists. It is hard and it takes lots of effort, but it is the best way to achieve accountable and responsible journalism. Eveleth also urged editors to seek disabled writers because they are more appropriate for the job. After all, journalism is about making a difference, and it should embrace "the power of letting real human stories, often related to trauma, guide, shape and direct the stories that we put out into the public," Devaney said.

October 31, 2016

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