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\u2019s in constant pain. I don\u2019t agree with her decision. But this story isn\u2019t about her decision, it\u2019s about the incredibly negligent, ableist way that journalists are covering it.<\/p>\n
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Frustratingly, ableism isn\u2019t quite recognized as an actual \u201c-ism\u201d 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\u2019s E News<\/a> because I don\u2019t think I could describe it as succinctly. Ableism is \u201cthe misguided societal perception of those with disabilities as less capable, more pitiful and inherently different from able-bodied people.\u201d Landre goes on to say, \u201cIt\u2019s 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\u2019re propagating it at all. It\u2019s not driven by hatred or hostility, like discrimination towards a different race or gender, but originates in misguided compassion and ignorant pity.\u201d It\u2019s so ingrained in our culture that people scarcely realize they\u2019re propagating it at all.<\/p>\n This is probably why mainstream media have such a difficult time handling people with disabilities, why there\u2019s 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\u2019s rarely intentional, people don\u2019t see it as a problem. Or because it\u2019s so ingrained in our culture, they don\u2019t even recognize it.<\/p>\n Articles covering Jerika\u2019s 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\u2019s easier to go into a story without examining your own biases, and to take everything at face value. I know that it\u2019s easier to not look around and see all the possibilities, that it\u2019s 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\u2019s first instinct may be to not question anything. But that is a journalist\u2019s job, if a journalist ever hopes of telling a truthful story.<\/p>\n I love journalism. I love investigating stories, exposing wrongs, writing stories about things that are generally underreported<\/a>. But I\u2019m 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.<\/p>\n Here\u2019s the deal: journalists\u2019 failure to confront their own biases before going into a story, their failure to check facts, their failure to make sure<\/em> they have examined every possible angle of the situation \u2013 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 \u201cNo, this isn\u2019t ok,\u201d then young people with SMA would have both opinions to weigh. The journalists\u2019 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\u2019s wedding thinks he\u2019s right when he tells me it\u2019s sad I\u2019ve been in a wheelchair since I was tiny, even when I tell him it\u2019s not.<\/p>\n I\u2019m not asking journalists to perform an unbelievably difficult task here. Other journalists have done it, even other journalism students, so it\u2019s hardly impossible. I\u2019m 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\u2019re 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\u2019t be condoned by the media, which is arguably the biggest things that shapes our ideas and realities.<\/p>\n 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.<\/p>\n Hannah Soyer<\/strong> 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\u00a0Iowa Youth Writing Project<\/a>\u00a0for the past two years, and\u00a0IowaWatch<\/a>, an investigative journalism organization. Her story with IowaWatch on Iowa schools\u2019 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.<\/p>\n Blog:\u00a0https:\/\/hannahsoyer.wordpress.com\/<\/a><\/p>\n Twitter: @soyernotsawyer<\/a><\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":"![\"Image](\"https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2016\/09\/11139352_877562328958422_3702072136277587825_n.jpg?resize=300%2C300&ssl=1\")
<\/p>\nAbout<\/h3>\n
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