When Language Matters More Than People

a mouth trying to speak but held captive by barned wire

Image description: a mouth trying to speak but held captive by thorns like barbed wire.

In case you hadn’t noticed, disabled children and adults are being abused and killed. A month doesn’t go by without a major news story about an Autistic person being killed — sometimes by police who weren’t trained in how to interact safely with Autistic people in law enforcement situations but more often by the person’s own parents or caregivers. It is tragic, depressing, frightening, angering.

And it is part of a disturbing trend in which people see Autistic people and other disabled people as somehow less than human. This is the most troubling of all — those dramatic stories of abuse and murder are the bloody tip of a massive iceberg and there are days when I feel crushed beneath all that ice of hatred and dehumanization.

But what I really want to talk about today is what happened to my friend, Lei Wiley-Mydske. Lei is a beautiful Autistic woman, mother of an equally beautiful Autistic child and the founder of the Ed Wiley Autism Acceptance Lending Library in Washington state (I plan to tell you more about this outstanding library project in a future post, so stay tuned!)

To explain how it is that many people decided that language matters more than people — at least so long as those people are Autistic people — I have to backtrack a little bit.

All of this started with one of those major news stories of abuse. On July 21st, the Washington Post reported that a couple in Rockville Maryland had been charged with abusing their 22-year-old twin sons. The young men are Autistic and the couple chose to keep them locked in a smelly, soiled, bare tile basement. The men were removed from their parents’ custody and the couple were charged with abuse and false imprisonment of vulnerable adults.

Five days later, the Washington Post ran another article. The lead paragraph reads, “Adult twins with autism locked in a barren basement room every night. No lights. No bed. Their parents charged with abuse.” Yet the newspaper had the gall to run this article with the headline: Coping with adult children’s autism, parents may face ‘least bad’ decisions, implying that it was a “least bad” decision to keep human beings locked up in conditions so awful that if the twins had been dogs instead of Autistic humans there would have been an outcry and no one would have dared to support the couple’s choice.

The article does quote the father of an Autistic adult saying that we can’t condone their choice, but that statement is lost in a sea of hand-wringing and justifications.

This is where my brave and beautiful friend Lei enters the story. She wrote this wonderful letter to the editor that was published on August 1st in the Washington Post:

Where’s the Empathy for Autistic Children?

Regarding the July 27 Metro article “Autism in adults is a challenge for parents”:

As both a parent to an autistic child and an autistic adult, I am horrified by The Post’s inability to even entertain the humanity of autistic people. Locking up children in their homes is abuse. It is not a “least bad” decision. If those children were typically developing, would we even be defending the parents?

Autistic people have the same rights as anyone else. The fact that I needed to type that sentence in 2014 is incredibly disturbing to me.

When your reaction to this type of abuse is to defend abusers and not victims, something is wrong with you. When we defend abusers of disabled people, we make it easier for such abuse to happen again. I don’t care how difficult it is to put up with me, I do not deserve to be locked in a basement without any of my basic needs being met. That is torture, not a “least bad” decision.

I can’t think of one situation where abusive treatment would be justified.

Where is the empathy for us? The Post seems to be missing that a lot of the time.

Lei Wiley-Mydske,
Stanwood, Wash.

This is a beautiful and heart-felt letter. Almost all of the responses to it on the Washington Post site were deeply supportive. But Lei is also on facebook and “findable” because of her work with the Lending Library and many of the direct responses she got were equally deeply disturbing.

On the surface, perhaps, the responses seem polite and innocent. All of us who choose to identify as “Autistic” rather than “people with autism” get these comments at some point. What I’m referring to is the insistence that we are wrong if we do not use Person-First Language.

I’ve written about Person-First Language before. If I could only send you to one link to help you understand why so many of us choose to use the label Autistic instead of Person with autism, I would send you to Lydia’s wonderful essay and collection of links: The Significance of Semantics: Person-First Language: Why It Matters. It’s long, though, so I’ll just boil it down to this: autism is not some extra thing we carry around outside of our true selves. Autism is pervasive and there is no part of me that is not Autistic. I don’t have a core of non-Autistic me that is surrounded by a shell of autism. As the saying goes, it’s turtles all the way down. To say that people must call me a “person with autism” in order to remember that I am actually a genuine, real, human, PERSON despite also being autistic is to say that YOU do not see me as a person and YOU do not believe that others will remember that I am a person unless you are using language to constantly remind everyone of that fact. I find that deeply offensive. I am obviously a person and anyone who insists that I must refer to myself with person-first language is only telling me that THEY do not see me as a person and want me to remind them of it over and over.

And this is exactly what the people did who approached my dear friend, Lei, and told her that it was great that she was published in the newspaper but she should have used person-first language when she talked about herself and other Autistic people. Those people were effectively patting her on the head in a patronizing manner and saying, “good job person with autism, but you used the wrong words, honey.”

That is infuriating!! An Autistic woman bravely stood out from the crowd to say that abuse is abuse and it is never a “least bad” decision to abuse human beings and she was told that her message didn’t matter because she said it wrong. Do we really have to walk around saying “person, person, person. I am a person. I am a human being. Oh, and by the way, other people are also people and would you please remember that we are human and not abuse and kill us? person, person, person.”?  Humans who are not disabled are not expected to go around reminding everyone that they are people. Why must we? What the hell is wrong with the world? You people who refuse to acknowledge our personhood unless we talk about it the way you think we should: what the hell is wrong with you?

Next time someone tells you that they are hurt and angry about the way the world talks about them and people like them, if you feel tempted to tell them that they told you with the wrong words . . . just shut up and listen. Because if you tell someone that they are only allowed to complain about how they are being spoken of if they complain in the words that you think they should use, guess what? You are exactly the problem.





17 responses to this post.

  1. Thank you for writing this! <3

  2. One of the things I find especially confusing about people not understanding the use of identity first language instead of “person first language”, is that, in the context some other disabilities that use identity supporting language, because of the impact they have on a person, people do ‘get it’.
    What’s so different with autism then I wonder?

    For example, I don’t think anyone would ever say “a person with blindness”, no they’d say a “blind person”. Likewise, who would be caught saying, “a person with deafness”? How about “a person with amputations”?

    There are even some where it can go both ways and no one bugs people if they use or prefer one over the other. Like, “an epileptic” versus “a person with epilepsy”.
    Same goes for “an anxious person” versus “a person with anxiety” it impacts every damn part of my life to have anxiety, it might be a part I’d like to not associate with or it might be something I recognize as integral to the make up of ‘me’, and no one is going to tell me that I can’t say it either way.

    People just don’t police other experiences of disability the same way they do autism, and I don’t understand why, why anyone would ever feel the need to single out autistics. I could understand a friendly reminder that “other people might prefer X” but not “you shouldn’t use X for yourself”, why, why do they get to decide that?

    Lei I am very sorry it happened to you, the treatment of those boys is a very important issue, I don’t have the words to express how I feel about it, but I’m glad you did. Thank you, and again, I’m sorry for the nonsense you got over it.

    • Yep. It’s the stigma imposed on autism specifically. If I say “I’m hypoglycemic,” no one reminds me to put my personhood before my condition.

      For some reason, people really, really, really don’t want to have to think that autism is intrinsic and important to who we are.

  3. Yes! Exactly! Yes! Yes! YES!!
    <3 and thank you to both you and Lei

  4. Posted by Dani Alexis on August 6, 2014 at 6:18 pm

    Reblogged this on Dani Alexis and commented:
    One of the more pointed pieces on language policing I’ve read in a while (“pointed” in the best, most effective ways). Worth a read.

  5. Well written and very needed. Thank you.

  6. Posted by merelyquirky on August 12, 2014 at 9:22 pm

    Aside from not letting us choose our own identifiers, my main issue with person-first arguments is that it is ungrammatical, awkward language. In English, adjectives precede nouns. When referring to a red book or a tall man, no one questions that book and man are the nouns in the phrases.

  7. It is a tragedy that things like this still happens! I am autistic and if anyone would refer to me as a person with autism I would most likely go bananas. I got really upset about what happened to your friend. It could be that a “normy” cannot understand a non visual disability and are not use to hear/ read comments from someone on the spectrum. But it is one thing to not get it and quite another to express yourself in such a way that your showing your ignorance so clearly. Maybe it is time to educate the masses on how it is.

  8. […] so does Unstrange Mind (Content warning: lots of talking about […]

  9. It is amazing that people seem to think a “person” and “autistic” are completely incompatible. It is too akin to eugenic movements in Europe and America for respectible people to even consider valid. To me it seems the people criticizing Lei’s work are in fact one in the same mind as the awful editors of The Washington post, refusing to see someone as human, which, sooner or later, always leads to atrocities if it is not stopped.

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