Sunday, June 15, 2008

A word for the history books

When I first started writing this blog, I was still using the term “curebie.” You can find it in the archives, it’s a part of my history. As I began to write more and more of the need for respectful language in discussions of autism, I had to give this some thought. I considered the possibility that some people who had been assigned this label were at an early point in the process of acceptance, a process which would not be expedited or supported by my use of an objectionable term. I got to know some of the parents connected to Autism Hub. I realized that most of these folks, strong supporters of Autistic Rights, hadn’t started out that way. For most of them, time and careful consideration were required before coming to acceptance.

It seemed that the people I met in person who supported finding cures for autism had never even known that another point of view existed. All they had heard was that autism is tragic, that it steals children, leaving empty shells behind, that it ruins lives and families, that it costs society dearly.

And then there were the hardcore seekers of cures who were never going to be swayed by my arguments. What would they do with a word like “curebie” but hold it up as evidence of hypocrisy or take it as a badge of honor? If I am going to continually ask these folks to stop using words like toxic, disease, and damaged, maybe I should not use words myself which they’ve asked me not to use.

Yes, there is a power differential to be factored in. And I think that some of the people who would say, “well isn’t this the same thing?” understand the difference perfectly well. Others don’t, and at some point in the journey toward understanding, there may be a window of opportunity, a reachable moment. I don’t want to blow it by using a word some consider a slur.

I think this is an example of what some have called Theory of Mind. Not only do I imagine the other’s state of mind, I alter my behavior, if ever so slightly, due to this understanding.

When someone persists in using insulting words, after having been told that these are not only hurtful, but damaging in terms of very real consequences, that person willfully disrespects his or her opponent. Such actions speak clearly about the values of people who see themselves as somehow more worthy of respect, more human, than the pitiable beings they would "help." Sometimes this is done in a spiteful way, as when someone again compares autism to cancer, noting that it sure is going to upset the “ND.” Usually, though, it just comes across as extreme self absorption and arrogance.

The decision to change this one aspect of the way I talk wasn’t made lightly. The reason isn’t that I like hurling insults. It is that I have been asked to shut up a few too many times. I had to be sure that no one took the word from me, that I made the decision myself based on new information and logic. After all, I've considered abandoning perfectly good words like "neurodiversity" for reasons which in the end didn't hold up.
I’m not well equipped for games. I grow tired of games. Especially those like Ring Around the Straw Man, and Red Herring Roundup. Check out the first comment on this post, wherein a well known autism advocate engages in a disingenuous redefining of “freedom of speech.” Despite his training as an attorney, he implies that his legal right to self-expression is somehow threatened by another person’s stating of an opinion. Are we really meant to believe this? Or to think that he does? No, this is a shell game, an attention shifting tactic that has no place in a serious discussion.
It's all enough to make me want to say some very bad words (see Jenny on the Larry King show with the doctor). At least for today, though, I won't. It's not worth my time and I've got all kinds of Neurodiversity work to be done.


  1. Thank you. I agree, and sometimes wonder if I should not use the term "neurotypical," but haven't found a good substitute. I don't think there is any convincing or even any point in interacting with some people on this issue but haven't found the right balance between not talking about it and not talking about it pointlessly yet. So I am going to keep sending people to your blog because you explain so much so well.

  2. 'If the truth would murder your religion, would you murder the truth'

    This statement is used in university settings discussing the Taliban and any other extremists.

    Sometimes I think it describes a certain group of people who want science....but only the science that supports what they want.

    I feel pity for parents who spend all of their money and equity in their house on snake oil. If the peddlers of this snake oil were so moral about helping children they would not be prohibitively expensive. If the track record for recovery was not so abysmal insurance would pay for it.

    I don't know if you have heard this.....
    Omnibus Autism Proceeding | US Court of Federal Claims

    It is live audio of the Omnibus hearings. Go to the very last one, it concerns why the court decided mercury does not cause Autism. It is a little long to listen to so you can scroll out to the end and listen to the final reasons.

    The vaccine injury fund will not be paying out any mercury related claims. I predict that in two years time there will be no more civil suits against vaxx manufacturers concerning mercury.

    It is possible to our legal system to decide there are premises that one cannot sue on and I believe thimerosal is about to be one of them.

    Then it will switch to the so called toxicity ect of the MMR.

    I do not think neurotypical is a pejorative. I like it better than normal because I am normal for me-just not average in the population.

    And that is (so says the Cookie Monster) good enough for me.


  3. You are a very wise and thoughtful person.

  4. Hi Bev,

    I agree. Unless my memory is failing me, I don't think I've used "curebie" for the past three years or so, though it's possible someone might find an instance... I don't think I ever got used to using it. However, I do like the fact that Kirby sounds like "curebie" for some reason. "Kirby" in my mind is an epithet on it's own. :-/

  5. Hmmm. I carefully avoid the term "neurotypical" because I don't believe that it is any more appropriate to describe one particular kind of neurological configuration as "typical" than it would be to decide that a certain skin color, religion, etc., is typical. It's not just one kind of person either, as there are many different neurological types that make up the non-pathologized majority population. If I am writing about people who are not autistic, I just call them "non-autistic."

    I only use "curebie" to ridicule the extremists' cultlike attitude. And yeah, it's disrespectful and a bit juvenile, like the political insults that get thrown around on talk radio. You're quite right that using such language tends to polarize people into opposing camps and to make it harder to find a middle ground. The political benefit is that it gets one's own side fired up, but too much of that stuff can lead to widespread nastiness where people just hurl insults and refuse to talk intelligently, as we have seen in US politics in recent years.

    Accordingly, I'm editing my sidebar to remove unnecessary references to curebies, so that the word appears only in the title of the Curebie Graveyard, which is nothing but political snark anyway. Thanks for a thoughtful post and for prompting me to consider my use of the word.

  6. I have had a harder time understanding the problem with "neurotypical." Of course I agree that there is no "typical" person, but unlike "curebie" it was never meant to be mean or derisive. Still, it is inaccurate and some have objected to it. I do use "non-autistic" when that's what I mean, but that leaves no convenient shorthand I can think of for talking about those not-autistic-not-ADD-not-bipolar-not-anylabel.

    I have to admit that I'd hate to see anything happen to the graveyard. And I do think you have always been clear in making the distinction between those who are hateful toward autistics and those who are merely uninformed or naive.

  7. To borrow a phrase from disability rights advocacy, we could call those with no psychological diagnosis the Temporarily Unlabeled...

  8. Temporarily Unlabled, yes, I'd forgotten that one.

    Testing: "Many TU's enjoy chatting about celebrities."


  9. Not at all fond of 'neurotypical' (never use it) and still waiting for a halfway acceptable definition of 'neurodiversity' - that actually has practical value. The concept is fine at a very general level. Seems to turn into an epistemological quagmire when trying for a little more specificity.

  10. I've had trouble finding a label for the people who don't have any labels. I describe myself as "neuro-divergent" and I use this word for anyone with a neurological condition which causes unusual peaks and troughs in ability. That would include the autistic spectrum, dyspraxia, dyslexia, ADHD, Tourette's Syndrome, William's Syndrome, Irlen Syndrome, NVLD and prbably a few other things I've forgotten/ never heard of.
    My label is dyspraxia. (In my latest assessment, my verbal comprehension was in the top 0.1% of my age group, but my visual processing was in the bottom 4% and my short-term memory was in the bottom 2%). Those scores are pretty divergent, so neuro-divergent works for me.
    I don't think ONE person can be "neuro-diverse". The human race is neuro-diverse, in that it includes all sorts of brains. Organisations should eek to be neurodiverse just as they should seek to be ethncally diverse. But one person can't be diverse alone. If ten black people and one Asian person are standing in a room, the Aisan person isn't racially diverse just because they appen to be a minority. A group of several people of several races would be racially diverse, but one person cannot singlehandely be racially diverse.

    The trouble with the TU label is that it gives a pcture of psychitrists malciously ganging up to invent meaningless labels for people with no real problems. I agree that people are more than labels and that people should accept others' quirks without needing a label to explain them. However, there are plenty of people out there who say "autism/ ADD/ dyspraxia is just a medical justification for laziness/ stupidity/ selfishness/ a lack of discipline." These labels describe real characteristics which need real accomodation. And I DO think official diagnoses are valuable, because they help people to understand different kinds of mind. It also helps people understand their own minds.

  11. I don't remember if I've really used the word "curebie" in any of my blog posts, but I think you're right, and I will avoid using the word from now on.

    "Neurotypical" I have no issue with; before I received my ADHD diagnosis, I considered myself to be an "Atypical Neurotypical", and recently found the "diagnostic criteria" myself and some of the folks over at created (many years ago now).

    I think a lot has to do with purpose. If the intent behind our use of a word is negative or derogatory, then perhaps we need to reconsider. Otherwise, it may not be an issue.

  12. I guess one can also say that if you've seen one non-autistic, you've seen one non-autistic. There is a wide spectrum of people of those who are non-autistic. And even those sitting at the median are not characteristic of the whole.


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