by Hannah Soyer, Disability Visibility Project,
Ms Soyer is studying for degrees in Journalism and English at the University of Iowa. She has worked with the Iowa Youth Writing Project for the past two years, and IowaWatch, an investigative journalism organization.
She has spinal muscular atrophy, the same disease as Jerika Bolen, a 14-year old girl who died in controversial circumstances last week in Wisconsin.
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.
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.
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