Reaction to the UU World Article Purportedly About Neurodiversity, Spring, 2019 Issue

neurodiversity

(image of the neurodiversity symbol, a rainbow infinity sign)

I first heard about what my friend and I have decided to call ‘the catastrophe’ on a Monday night.  I happened to be away that night, but I read the UU World article online and spent a few hours comforting and being outraged.  I noted in the article Kimberly French’s incredibly awful proclamation that disabled people prefer ‘differently abled’ (no, we don’t, we never have, stop trying to make it a thing) but when I opened up my physical issue of the magazine the next day, I was prepared for the hurt within as a bystander – after all, I’m not trans.

                “Are you surprised that UUism is full of transphobia?” a minister asked my congregation shortly after the article came out, citing the statistic that 42% of trans people ‘experience regular trans-related marginalization in UU spaces’. (The statistic is in the the TRUUsT Report, in the Summary on page one, and in the main body on page 7 https://truust.files.wordpress.com/2019/01/trans-uu-experience-survey-report.pdf) I showed my emotions in a typical way, I would have shrugged.  As it was, my face was blank (my face is usually blank) but was I surprised?  No, of course not.  Of course transphobia was rampant in UUism.  After all, I’d been experiencing entrenched ableism for years.  Of course marginalized groups were marginalized.  To me, that’s perfectly normal.

                What with all of the (deserved) attention on the article-purportedly-about-trans-people, I understand if people missed the other disaster of an article, this time on page 10 of the physical issue.  (link at the bottom of this essay) Aside from me, nobody really noticed it.  But I did, because while I might not be trans, what I am – as anyone who knows me will tell you – what I am is autistic, neurodiverse, disabled.  My brain and body are unusual, a zebra in a herd of horses, so the title ‘The spectrum of inclusion: UU communities are learning to value the many forms of neurodiversity’ caught me right away.

                As did….the puzzle piece?  What the heck?  What were watercolor puzzle pieces doing illustrating an article purportedly about neurodiversity?  Didn’t people realize that most autistic people hate it?  Why not use the actual neurodiversity symbol?  “I am a person, not a puzzle,” I frequently tell people when they ask why I hate that darn shape.  (https://learnfromautistics.com/the-problem-with-the-autism-puzzle-piece/) What I don’t say is that the puzzle piece is used by charities that do active harm to autistic people, that autistic-led organizations prefer the rainbow infinity symbol of neurodiversity, and that there are many talented autistic artists out there who could have created a much better illustration than some wishy-washy puzzle pieces.

                The second thing I noticed about the article was the pronoun – he.  He, he, he.  With one exception, every autistic person mentioned or quoted in the article was a male.  This is surprising, since in the actual autistic community, people of all genders and gender representations are presented.  Then again, I shouldn’t have been surprised, as they only quoted two actual autistic men, both from the same family.  (This in comparison to the ten non-autistic people they quoted.) Even without any ability to do math or analyze numbers (as you didn’t learn from the article, some autistic people are really terrible at math and analysis) I can tell you that 2/12 is a very low percentage.

                The more I read, the angrier I got. As in the Catastrophe article, there was so much in this one that was just plain wrong.  Autistic people do *not*, for example, have eidetic memories, and that has never been considered a classic trait of autism.  We do tend to have very good memories, but eidetic ones are rare.  Pursuing AIM certification doesn’t actually mean that a congregation is welcoming to people with disabilities – at one point, my congregation was attempting the program while several disabled people left due to lack of access.  Mostly, though, what I felt was loss: the loss of autistic voices so that the voices of more religious professionals and parents could be used.

                The article on neurodiversity wasn’t a catastrophe.  It was, rather, a mess, a severe thunderstorm instead of a hurricane.  It couldn’t seem to decide if it was talking about neurodiversity or about autism or about disabilities, and so flipped between the topics and confused them.  For example, it cited modifying noise levels as something churches can do to be more inclusive, but didn’t say what is obvious to any disabled person: different people have different needs in regards to hearing things.  For some, modifying noise levels means installing a loop system for hearing aids and making sure everyone uses the microphone.  For others, it means installing sound-dampening panels so the organ isn’t so loud.  For me, it means making sure that all of the microphones and speakers never, ever have feedback, which makes me feel as if my body is being poked through with hot iron sticks and inevitably causes me to visibly startle and sometimes yell out or duck under the pews in the middle of service.  Anyone will agree that children and adults have vastly different needs and the expectations for them should be very different, yet their stories were mingled together in this article as if children and adults with disabilities were a single population. 

                There were parts of the article that were good.  A thunderstorm, after all, can bring needed rain.  The author quoted Steve Silberman, whose book on the history of autism and neurodiversity, Neurotribes, remains the single best book that I’ve ever read on the subject.  The resources listed were good.  They got the language right – we are autistic, not people with autism, thank you. 

                But just as with the Catastrophe feature article (not essay, Chris Walton, article) on page 30 of the magazine, this article should have been written by an autistic Unitarian Universalist – like, hey, me.  Autistic people are, overall, vastly un and underemployed for our education levels, there are many great writers out there, and paying a non-disabled person who probably doesn’t live in poverty to write about a population that almost universally does is just, well, icky. 

Also, did anyone else notice that this article only talked about a certain segment of the autistic population, people who seem able to fit in and accommodate others, people who others want to accommodate.  What about the child who pays no attention in RE and doesn’t seem to be getting anything out of it?  What about the adult who scratches and bleeds through the service?  What about the nonverbal person who runs around, blowing out all the candles on Christmas eve?  What about the person who can make meaningful contributions to congregational discussions on important topics, but makes people uncomfortable by their constant chewing and stimming in meetings? How do we accommodate those people? (Hey, there I am again!)

This article offers no suggestions for the harder parts of being neuroatypical, and please trust me, although I do value autism and neurodiversity greatly, there are really, really, really hard parts to it, too.  People have a very hard time understanding that autism isn’t something that affects you part of the time; it affects 100% of a person 100% of the time, and if you want my insights into healthcare, you have to put up with the fact that I frequently bleed.* You have to accept all of us, all of the time.  I shouldn’t have to leave church during a meltdown, I should be able to get the support I need to get through it so that I can continue participating in a community I love.

                Truly valuing neurodiversity isn’t just about accepting the gifts and the good parts.  It’s about accepting the mistakes and the bad parts, too.  It’s about not assuming that just because someone has a master’s degree, they can tie their shoes, and just because someone can’t speak, they aren’t educated.  I, like many autistic people who speak verbally, can and do go non-verbal in times of stress.  A congregation shouldn’t just be prepared for people to be different – they should be prepared in concrete ways, like having PECS signs, clearly marked emergency exits, and the understanding that when a person is absorbed in their smartphone, they may be communicating with you the best they can, by typing.

                A minister, who has since left, once explained to me (in writing) that I was racist because I didn’t understand his accent, and if I tried harder, and opened my heart more, I could.  I explained that, actually, I have non-verbal learning disabilities, auditory processing problems, autism, etc, which make it really, really hard for me to understand anything but conventional American English because I don’t get the nonverbal cues and inflections which give neurotypical people clues to the meanings of words.  No, the minister said flatly.  I’m racist.  I admit that as a white person, I’m inherently racist, but in this case, I just don’t think I was.  If not understanding accents was because I was racist, then why would I need subtitles on the BBC? 

                This is just one small example of the ableism and discrimination that I have faced as an autistic UU.  I remain committed to my congregation and try to live UU values, but it is really, really hard to do so on days when people assume that my flat affect means I don’t have feelings, or UU World decides to write an article centered not on autistic voices, but on the voices of those affected by autism.  Just as with the Catastrophe article, it should have been done better.  Unlike with that article, however, I honestly don’t think the writer or editor knew any better.  And unlike them, there will be no big conversations.  There will be no apology, no meetings.  It’s my honest opinion that Chris Walton needs to resign over the Catastrophe article, but over the autism article?  Eh.  It’s ableism.  It’s entrenched in UU culture, and nobody is particularly concerned. 

 

(article I’m referring to in this piece can be found here https://www.uuworld.org/articles/valuing-neurodiversity although I’d like to state, in case you didn’t catch it in the essay, that I think it’s awful and should not have been published as it is.)

 

*Yes, I’m working on it.  I’ve been working on it for decades.  Yes, I have tried every medication and supplement out there, yes, I see many doctors and therapists and yes, I’d rather you listen to my insights than get fixated on the blood.

6 thoughts on “Reaction to the UU World Article Purportedly About Neurodiversity, Spring, 2019 Issue

  1. I just love “Have you tried…”! I get it more regarding my chronic migraines than my autism or ADD, but I still find myself saying, “Unless you’re about to tell me about your research that’s just passed peer review, then yes, I’ve tried it.”

    How are never seen as experts in dealing with what we’ve had our whole lives?

    Anyway, as a youth advisor, I’m kind of the go-to person for neurodiversity issues in youth cons and the like, and while that might be tokenizing, at least I know what it’s like, and I can help make the con community more aware. One of the reasons I love that community is that all I have to do is raise awareness. Acceptance and inclusion take care of themselves, unlike in the larger (adult) world.

    Liked by 2 people

  2. Thank you for this! I didn’t see this article, and I’m glad you’ve brought attention to it! I love UUism because how important anti-racism/sexism/heterosexism/cissexism/islamaphobia/etc is to so many of us, but I feel like disability and neurodiversity is often overlooked. Don’t get me wrong, so are the other things, and I do NOT mean to say that disability is more important than the rest– they’re all equally, and maximumly important. But diversity & neurodiversity need to be included when people are addressing these other serious and important issues, too– especially since so many queer &/or folks of color are disabled as well, and to only address some parts of the oppression they experience (and that we, even accidentally, perpetuate ourselves) and not others makes no sense.

    Liked by 1 person

  3. Hi there, I’m glad you posted this because I did find the article puzzling, but I am not American, so I thought it was a cultural issue.
    It seems that despite all our proclamations and backward bending to express ourselves correctly we keep missing the central point: someone who is different is a person is a person is a person.
    You make good points. I hope more UU will pay attention and gain insights from what you say…
    peace

    Liked by 1 person

  4. Thank you! I find it very frustrating that the UU World is publishing pieces by people writing about things that are not their lived experiences. As UUs, we have a tendency to think we are above exclusion and discrimination, but we are not. We need your voice and the voices of others who are autistic to share what you know, and need to stop talking over you and listen.

    Liked by 1 person

  5. How could I subscribe to your blog? I encountered your blog above by accident while on the FB page of the UU Society of Amherst. I found your words heart-wrenching and uplifting, all at once. For thirty years now I’ve been a parent of a son with nonverbal LD and ADHD, much of that time serving as a UU parish minister. Thank you so much.

    Liked by 1 person

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