Humans. I’m sure I don’t need to tell you; we are one fragmented and flawed race. So many complex issues for, against, and with other humans. So many small infractions upon each other and some days those small dings compound into too much.
In my world, I am witness to an ongoing phenomenon called ableism. Oh no, not another ism! Cry the masses. I know! It’s a thing – an action, a reaction, a statement, a way of thinking that I didn’t even realize had a name until a few years ago. The short version, if this is a new term to you, is this: ableism is when a person is discounted, discriminated against, or even physically abused, because of a disability. Like any ism, people are often affected via micro-aggressions that come so subtly, and so frequently, that the person targeted is encouraged to ignore it and the people perpetuating the offense claim to not see it or understand what the problem is, anyway.
As someone who loves someone with a developmental disability, I felt the ding recently in a blog shared by an author I respect. She wrote of the challenging experience, admittedly mostly to her own preconceived perceptions, when her 6-month-old son required helmet therapy. While this mom learned that the flat spot requiring the helmet was not “her fault,” she also learned that people do stare but that she could help teach them and decided to use this experience to educate and reassure.
What did she reassure? She assured people “it was a physical, not mental issue.” This is where the ding comes in, because of the implication that a “mental issue,” well…that would be worse. That would be a cross too much to bear and would make her child, somehow, less than. I felt the nudge. I shuddered to imagine the real life moment, when she had these conversations, and the other mom silently bit her tongue, knowing her own child, or brother/sister, or friend, was duly branded with this “at least it’s not that” status.
No, I don’t think those three months appreciating her child’s uniqueness, taught the entire lesson. The lesson that we should celebrate every child’s uniqueness, helmet or no, “mental issue” or no, what about that lesson? (Sigh.)
Another more obvious example is the r-word. It is a slur that has made its way into the American vernacular and is thrown around as a bully tactic and spewed with such bitterness that it has become a profanity of hate. Period.
What stirred me up today is that even within the disability community, and those who proclaim to be allies, there is a hierarchy. A running stream of ableism that cuts and curves through our own and holds people with developmental delays firmly submerged under the rest. Let me share a few more examples of these small pushes downward.
Another writer in the community recently demonstrated this when a person in an office role designed to help people with disabilities used the r-word. Mr. Hingsburger recognized that this person was likely:
“Betting on the fact that as I had a physical disability and not an intellectual disability that I’d be in your camp, on your side. You were betting on my being so wrapped up in my insecurities that I’d be pleased to be included with you, and not them. That I’d be one of the ones who liked it to be clear that ‘at least I’m not r#tarded.’”
What upsets me is, as his blog showed, how many others who claim to be allies, or maybe I too boldly assume should be allies, are not. They are just not; and they don’t even seem to know or care. The most upsetting example, that clarified this whole hierarchy of ableism, is the widely acclaimed book Wonder.
As a bit of explanation, the protagonist of the book is a boy who has mandibulofacial dysotosis named Auggie, in his case this means he has a craniofacial disorder. A pretty extreme one, based on the descriptions and reactions demonstrated in the book. Now, technically, this is not a disability.
David G. Roche, who also has a facial difference, calls this a social model of disability, because life for a person with facial differences has varying degrees of extreme and unique challenges and humans, as previously noted, are not always open and kind to those who are different.
That’s really where the book steps in. It is acclaimed as a tool to open conversations between people who may be different and proud to take a hard look at what it means to bully and to befriend. And yet, R. J. Palacio, the author, chose to use the r-word in our young protagonist’s dialogue.
- I’m a writer. I get the importance of imperfect characters and emotional dialogue. Sadly, those reasons don’t appear to be Palacio’s intention. I have come to this conclusion based on two factors:
One) When I read the book, of course, I hiccupped at that moment. I stumbled over the word in the text, and moved on. However, after I closed the last page and slept on it, the language stuck with me. The reason it stuck with me is because it was obviously the word and sentiment Palacio meant and intended to use. One of the currents that ran strong and fast through the book was this: Auggie’s intelligence. He’s smarter than many of his class. His school is not “special needs” inclusive, very clearly pointed out in the plotline is: his school does not even accept “special needs” students. Why is this important? Because it demonstrates the opinion that developmental disability is worse, much much much worse than anything else, it is a need to be separated, and consequently worthy of the venom and disgust the protagonist boy spat in a moment of anger and frustration.
This saddened me.
Two) The response by the Palacio to a callout by another mom on this subject saddened me even more. I knew I couldn’t be the first and only person to notice this grievous inconsistency with what is touted as the book’s overall themes of acceptance. The blog Love that Max, explained a mother’s letter, and the publisher/Palacio’s reply here in “A shocking truth about the bestseller Wonder and its disability dis” The blog shares Palacio’s reply which is, basically, the word was used because that’s what kids say. I can easily and swiftly counter this with many an argument regarding her word choice, but the aforementioned blog does a fine job of rebuttal, so I’ll leave it at: Nope. Not acceptable.
Essentially, Wonder exemplifies ableism in a strong and non-apologetic way, because, to have a book with a touted theme of kindness and acceptance put people with developmental disabilities at the bottom of the pool, both overtly and subversively, is heartbreaking.
The good news about humans is this, we can learn. I, for example, continue to notice and change my own word choices and active responses and am also noticing that my friends and family are evolving as well.
When the book Wonder is discussed in classrooms, although Palacio has not included this point in the discussion notes suggested to teachers, I hope that teachers will notice and encourage this issue to be part of the discussion. Words matter. If kindness becomes part of our stream of consciousness, accepting all others of varying abilities is part of that motion. There’s still more to teach. (Unfortunately, even our teachers currently have an #UnacceptableExample in leadership, but that’s a whole other blog here and will send you into another rabbit-hole that demonstrates ableism in our systems and schools.)
Wait, I was wrapping up with the good news.
Well, the good news begins and ends, as it always does, with you. First, I hope that you will make yourself a little more diligent to recognizing these small aggressions in action. Secondly, I hope you consider taking steps to educate others, children, family and friends, on these aggressions, including word choices. And Lastly, I hope, when you witness an ablest moment, from a person being knocked to the floor physically, to the person being demeaned (whether they are present or not) verbally, consider taking action.
Just as the small dings build up into big issues, small corrections can also change the course of our systems and societies until we have changed minds and actions as well. One last thing, keep teaching me, and let’s keep teaching each other.
Mardra Sikora is an author, speaker, & advocate who believes in the power of words and uses both fiction and non-fiction to advocate for and with her adult son, Marcus. Author of “Essay: Arguing Eugenics,” and The Future and Other Twists: A collection of short and super-short stories. Co-Author of The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood. Her work is also included in a variety of anthologies and national websites including The Huffington Post.