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Ableism in Journalism: How the Coverage of Jerika Bolen’s Story Negatively Affects All Readers

Ableism in Journalism: How the Coverage of Jerika Bolen’s Story Negatively Affects All Readers

Guest Blog post by Hannah Soyer

This fall I’ll be a senior with at the University of Iowa, where I’m majoring in English and journalism. I also happen to have a disability, which for better or for worse, means that I have had my fair share of stories about me. A good handful of them have turned out much the same, portraying me in a stereotypical, inspirational light. The stories that I was happy with, however, all had something in common: they were put together by journalists who listened to what I had to say and were not afraid to break the mold of the disability narrative so touted by mainstream society today.

Jerika Bolen is a 14 year-old girl with SMA (spinal muscular atrophy, the same disease that I have) who has chosen to end her life-supporting care at the end of August, thus ending her life. She says that the reasoning behind this is that she’s in constant pain. I don’t agree with her decision. But this story isn’t about her decision, it’s about the incredibly negligent, ableist way that journalists are covering it.

Photo of a young white woman in a wheelchair. Her hair is tied up with a red bandana. She has a blue t-shirt on, and an iPhone is on top of her left lap. She has her arm around a middle aged white woman who has shoulder-length blonde brown hair. She is wearing teal tank top and blue jeans. Both are smiling at the camera.

Frustratingly, ableism isn’t quite recognized as an actual “-ism” by mainstream society yet (my Microsoft Word is even telling me its not a word, signified by an angry red scribble), so I want to take the time to define it for those who are unfamiliar with the term. Actually, I am going to quote Anna Landre in her recent piece for Women’s E News because I don’t think I could describe it as succinctly. Ableism is “the misguided societal perception of those with disabilities as less capable, more pitiful and inherently different from able-bodied people.” Landre goes on to say, “It’s important to note that ableism is, in most cases, not purposeful. While racist or sexist comments are often intentionally discriminatory, ableism is so ingrained in our culture that people scarcely realize they’re propagating it at all. It’s not driven by hatred or hostility, like discrimination towards a different race or gender, but originates in misguided compassion and ignorant pity.” It’s so ingrained in our culture that people scarcely realize they’re propagating it at all.

This is probably why mainstream media have such a difficult time handling people with disabilities, why there’s always such a fight between the disabled and non-disabled community after a news story about a person with a disability is published that is clearly ableist. Because it’s rarely intentional, people don’t see it as a problem. Or because it’s so ingrained in our culture, they don’t even recognize it.

Articles covering Jerika’s story have conflated SMA with intense pain, flip-flopped on the number of surgeries she has had, and have not thoroughly investigated or reported on all of the possible reasons her quality of life is lacking. As a journalist, I know that it’s easier to go into a story without examining your own biases, and to take everything at face value. I know that it’s easier to not look around and see all the possibilities, that it’s easier to simply type out what you have in your notes, and not really do any thinking at all. I get this is a sensitive issue, and that a reporter’s first instinct may be to not question anything. But that is a journalist’s job, if a journalist ever hopes of telling a truthful story.

I love journalism. I love investigating stories, exposing wrongs, writing stories about things that are generally underreported. But I’m also a bit obsessive. I enjoy looking at details and figuring things out. I understand that not everyone is like this, and that certainly not everyone who majors in Journalism and goes on to be a journalist is like this, besides the fact that I believe schools need to do a much better job at teaching these skills and instilling these needs.

Image of a young white woman with her blonde hair tied up in a bun. She is outdoors behind a body of water and a wall made of stone. She is wearing a v-neck white t-shirt with a gray cardigan sweater. She is smiling at the camera.

Here’s the deal: journalists’ failure to confront their own biases before going into a story, their failure to check facts, their failure to make sure they have examined every possible angle of the situation – those failures all affect people. They affect the other young people with SMA who may now see ending their life as a lauded choice by society. If journalists would have included the other side, the side of people saying “No, this isn’t ok,” then young people with SMA would have both opinions to weigh. The journalists’ failures also affect the rest of able-bodied society, by dishing them up a huge, heaping plate of ableism that can sit comfortably in their stomach. Now, able-bodied society has another reason to think that life with a disability is horrible and unlivable. Now, the old man at my friend’s wedding thinks he’s right when he tells me it’s sad I’ve been in a wheelchair since I was tiny, even when I tell him it’s not.

I’m not asking journalists to perform an unbelievably difficult task here. Other journalists have done it, even other journalism students, so it’s hardly impossible. I’m simply asking them to step back and consider a few things when approaching a story that includes someone with a disability. I am asking them to think mindfully about who their sources are, where they’re getting their facts from, and how their own assumptions about their sources are informing the shaping of their story. All of these things, I think I can safely argue, are what journalists should be doing in the first place. And sure, maybe even with an informed journalist and a well-rounded story, there would still be ableist reactions from the consumers (as has been the case with some stories I have been featured in), but at least this sort of ableism wouldn’t be condoned by the media, which is arguably the biggest things that shapes our ideas and realities.

You can bet that the disability community is going to continue to be there each time an ableist story is perpetuated my the media, and you can bet that I am going to continue to do my part to educate my fellow journalists. But maybe instead of expecting marginalized people to disregard their own emotions to calmly educate you on the marginalized experience, we should start by having journalists educate themselves, so that the rest of society can be informed as well.


Photo of a room with a green colored wall in the background. On the right-side of the photo is a young white woman with shoulder-length blonde hair. She is wearing a black cardigan and a scoop neck purple top. She is smiling at the camera.

Hannah Soyer is a journalist and creative nonfiction writer, generally focusing on topics which she believes to be undercovered, and people she believes to be underrepresented. Hannah is currently working on degrees in Journalism and English at the University of Iowa. She was admitted to the Undergraduate Creative Writing Track, and hopes to join the MFA Creative Nonfiction Writing program in the fall of 2017. She has worked with the Iowa Youth Writing Project for the past two years, and IowaWatch, an investigative journalism organization. Her story with IowaWatch on Iowa schools’ compliance with the Americans with Disabilities Act was published in the Des Moines Register, the Cedar Rapids Gazette, and the Iowa City Press-Citizen, among other local newspapers.


Twitter: @soyernotsawyer


5 thoughts on “Ableism in Journalism: How the Coverage of Jerika Bolen’s Story Negatively Affects All Readers Leave a comment

  1. May you continue to be as thorough and exacting with your journalism standards as you are now. Much luck in your career, which seems to be off to an auspicious start.

    —a journalist and the mother of a child with Down syndrome

  2. My caveat here is about the notion that ableism is not like racism or sexism and not driven by hostility and hatred. Firstly – the Nazi extermination of disabled people was driven by exactly that, and secondly, so is the propaganda of disability denial against disabled people in the UK, in which governments have attacked disabled people in terms of taking away their means of survival and human rights relentlessly, all the while inciting hatred and hostility for ‘scroungers’ in the media. Even in the U.S. disabled people are abused by your police (including white disabled). Please do not downplay the level of hatred and hostility disabled people have had to endure.

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