April is widely known as “Autism Awareness Month“. However, since following several actually autistic writers and bloggers on Twitter and elsewhere, I’ve come to understand how even calling it that may be “ableist”. (Google the hashtags #ActuallyAutistic and #RedInstead for some samples.)
How is that you well ask? What is ableism?
Great question! And why I thought I’d write about ableism instead of autism for April this year. Update 4/1/18: I found out right after first posting this on Patreon last week that a wonderful #ActuallyAutistic person beat me to it here! (Great neurodiverse minds think alike!)
If the concept is new to you as it was to me last year (at 50), you may struggle to get your brain around it, as I’m finding it is well entrenched in the dominant neurotypical, white, heterosexual culture I was raised in and am still part of.
Further, many of us who were raised before the internet emerged widely in the 1990s likely have internalized ableism we may not even be aware of from these past “norms”. And it can be deceptively tricky to see and root out if so. I’m still struggling to do so, I was (and still am I think) so well entrenched.
Oh sure, we’ve thankfully stopped using words like “retard”, and “moron”, and “loony” (or should have by now), but there are myriad more ways we commit ableist microaggressions we may not even realize. (Raises hand.)
“The practices and dominant attitudes in society that devalue and limit the potential of persons with disabilities. A set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities. “
And believe it or not, this means not using person-first lanuage, or PFL. As in, not saying “a person with autism”, or “has autism” or “suffers from autism”. Why? Because the #ActuallyAutistic community (who are autistic, just like you may be straight, or left-handed, or black, or white, etc.) don’t feel it is a disease that needs eradicating.
Rather, it is just another way of being. Like being gay, or straight, or female, or male, or white, or (gasp!) neurotypical. (Also called “allistic” sometimes.) It is the medical community who has pathologized it after all.
And there is no shame in being disabled. It is (sensing a theme I trust)… just another way of being. Not less. Not better or worse. Just, different than the majority. And worthy of accommodation without apology.
Pitying or resenting disabled people is ableist. Try not to use disabled people for your inspiration, that is, as “inspiration porn” (guilty). This came to a head recently with the passing of the great physicist Professor Stephen Hawking, in which memes arose showing him being freed from his wheelchair upon his death, as though being confined to it had stopped his career.
Quite the opposite is true in fact: the wheelchair freed and enabled and empowered him to continue working despite his worsening ALS until the age of 76. He didn’t feel sorry for himself (to my knowledge). Nor sought anyone’s pity. He simply continued existing and furthering the field of physics.
I confess to describing myself as (and initially feeling) “wheelchair bound” when I first stopped walking in 2012 after my sudden massive onset “cascade” or storm that left me unable to walk at all for over six months at 45. I admit I had to do a bit of grieving for my lost ability – and that’s normal. And I was quite self-conscious the first few times I went out in my power wheelchair.
But… I also quickly came to see how freeing it really was, and ended up calling it my “spoon saver”, a reference to the Spoon Theory by Christine Miserandino. Without it, I had to rely on friends to fetch things for me, or wheel me around here and there when available. Or go without things, or miss opportunities and stay home-bound more than otherwise. I like to say “where there’s a wheel, there’s a way”, heh.
While I have regained the ability to walk after loads of hard work and therapy, I still need a cane and… I can still flare and go down quickly on a dime. So I still have my manual wheelchair yet, “just in case”. And I’m okay with this as well as with my cane. No, I can’t do many things I used to any more, but… I have adjusted and deeply appreciate all that I not only still can, but have learned to do with my new spoon-saving focus.
I also care less what people think of how I walk or work. I know why I do, and their reaction is on – and about – them, not me. I now say, “my life isn’t over, it’s just… different.”
And how, ow. But it’s definitely full and worth living, even if much more painful than before. The pain has only sharpened my already wicked sense of humor – just ask my friends! But I matter even if I couldn’t work or write as I’m now doing again. As does everyone else whether they can write, walk or work somehow or not.
Seeking a cure for autism is also ableist. If autism was a race, you would call that being racist. But it’s not. So urging people to try to cure, prevent or eradicate it is ableist. Like asking to wipe out all white people, or people with red hair or freckles or… you get my drift? If this is starting to sound a bit like eugenics and the holocaust, you aren’t mistaken.
The objection is to being called a “burden” and to our (usually) neurotypical (NT) parents seeking to eradicate this way of being all in order to conform to a neurotypical or allistic “norm”.
Don’t some autistic people need more support than others though?
Sure. Especially some non-verbal people, some hypermobile people like me, and those with greater learning disabilities, or language, sound, or sight processing differences among other things. Many of us can hear just fine – too fine in fact, but either can’t sort out your words from the back ground noise, or find the sound of you chewing or opening a package of chips (aka crisps in the UK) to be like fingernails on a chalk board or a siren wailing nearby. (Quite nearby.) Imagine if you could not verbalize this – how would you go about communicating your discomfort?
Some of us also have mild or more anaphylactoid reactions to scents, lending to loss of speech at times, among other things. (Migraines, IBS, more.) This is why we ask (nay beg) you to please not wear scented body products and perfumes – or a lot less at least, thank you.
Imagine, if you were highly sensitive to sights, sounds, smells or touch, but could not talk or speak clearly so as to communicate this fact. And… imagine if you had a million internal sensations, pain or thoughts taking your attention away from the “outside” world. You might resort to running and hiding in a dark room or closet, banging your head, self-harming or stimming or crying out in pain too. Yet, there you are, being forced to “look me in the eye” and use “quiet hands”.
Well, that also depends on whose perspective you’re taking – the NT, or autistic POV. If by high-functioning you mean slaving away at a 9-5 job and paying taxes, then yes, maybe some of us are “high-functioning” by that very limited definition. But we’d prefer the term “low support” in the allistic POV.
Further, the label “high functioning” can be equally misleading because, even if a person happens to be verbal most of the time, they can become quickly overwhelmed and experience so-called “selective mutism” (a misleading term – it’s not really selective, it just happens – ask me how I know), or the inability to speak (apraxia) all of a sudden. (And not by choice.)
Or they may be masking and passing as “fine” to you, but… inside they are overwhelmed or in deep turmoil coping with tremendous anxiety and stress or pain “under the surface”. This is often why children (or adults) can seem fine at school (or work), but then either want to retreat, or even meltdown upon getting home (or sooner). To call such people “high functioning” invalidates or dismisses their very real if invisible needs despite not appearing as disabled as a non-verbal person. So appearances are very deceiving.
Autism is fraught with variances and resulting misunderstandings for this reason. Some people are hypersensitive, or more than the average person, some are hypo- or less sensitive than the average person. And some vary from day to day or go back and forth. Some are highly verbal, others not at all, and some vary. Some like it hot, some like it cold. All will need to accommodate their individual neurology and needs, whatever they are. Some are cis-gendered hetero-normative, and others are not, falling somewhere on the gender identity spectrum.
Some feel almost no pain, and seem to bounce off the walls and be sensation-seeking. Others of us can wake at a mouse fart, and feel loads of pain for seemingly no reason at all. (Even in those without a form of Ehlers-Danlos syndrome, fibromyalgia or an HSD like me.) There are variations on a theme of sensory processing disorders or SPD.
It’s as individual as fingerprints.
And not all will have a form of SPD either. Some will be highly anxious, others less so. Some will be introverted, some extroverted. Some are visual thinkers, some audio, and others are pattern-seeking. Some of us are a blend of all three. (Raises hand.) So it is wrong to speak of all autistic and neurodiverse people as a monolith, with the same needs and traits at all times.
And I’ve really only scratched the surface of this topic, and touched the tip of the iceberg. There is a lot more that could be said and by many more well-spoken people (verbal or not). I’m sure I’ve barely done it justice, as a self-identified “autistic cousin” who can mask and pass most of the time, smile. (Gee, those meltdowns of mine are making more sense now aren’t they? I’m especially stressed when you ask me to either lie, or deny my feelings/experience as happens a lot.)
I hope you’ll join me in promoting autism acceptance and support, rather than awareness so much now. And… eradicating ableism. I know that I still have work to do – I’m still grappling even with some of the concepts above myself. (I still have 50 years of allistic “programming” to undo after all.)
But together, hopefully we can make the world a kinder and more accepting and tolerant place for everyone, autistic or otherwise. Thanks for reading! And especially, for your support!
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