(((nataluna)))

[Lyrics at bottom of post, past all the footnotes.] 

Before anything else, I have to say I love Susan Boyle’s singing.  I saw an interview once where a guy who worked with her to record songs, said that he’s never really met someone like this before – where basically, if she identifies with the characters the song, her singing is amazing, and if she can’t identify, she doesn’t sing well at all.  Which is something that makes total sense to me.

It took me a long time to be able to watch or listen to her, though.  I found other people’s reactions to her painfully familiar.  I guess I identified with her too much.  Both in watching how other people treated her and talked about her, and watching her trying to adjust to the new attention and publicity in her life.  I was glad people were recognizing her talents, but I boiled over with rage at the fact that most of the people who put her on a pedestal now, would have continued making her the butt of every joke if they’d never realized how well she could sing.  It’s like her singing skills made her human, and that made me beyond enraged.  

Hearing stories of how even as an adult, little kids would find ways to poke fun at her in public, reminded me too much of my own life.  Having recognition of my humanity depend entirely on recognition of my talents – same.  Watching her try and fail – spectacularly and publicly at times – to handle the ugly side of celebrity… I’ve never been and hope I never will be a true celebrity, but I’ve had my fifteen minutes of fame (which I only consented to because I thought it would get certain messages out there and was told hiding from all publicity might be selfish) and it was one of the most miserable experiences of my life.  So there have been many times I’ve found it too acutely painful to follow her, because I could identify with too much of what I was hearing.  It was like touching a raw nerve, I couldn’t handle it so I just looked away.

And also… and also.  I recognized her the moment I first saw her.  I recognized her as ‘my type of people’.  (Something that, while it has more overlap with some labels than others, is not tied to one specific disability label.)  I was not surprised to hear she was labeled as having some kind of nonspecific developmental disability growing up.   I was thoroughly unsurprised when, after all the publicity, and after some very public meltdowns, she was diagnosed with autism(1).  These things were on the order of “How did other people not notice?”

Which leads me to a question I’ve had for a long time:

Some autistic people are absolutely and totally obsessed with finding and listing famous people that they believe are autistic.  Much of the time, the people they’re calling autistic are either undiagnosed now, or were born and died long before they could’ve been diagnosed, so they’re guessing.  (I’ve got some problems with that kind of guessing, at least the way they do it.)  Sometimes, they do list people who are officially diagnosed.  But at any rate…

Of currently-living people, Susan Boyle may be the most famous person on the planet with any kind of actual official autism label.  She’s not famous for having autism, but she’s famous and she’s been diagnosed with Asperger’s, and these are facts that are readily available.  She’s certainly way more famous than Temple Grandin – she’s a worldwide household name, Temple Grandin isn’t.

I have never seen Susan Boyle on a list of famous people with autism.  And these lists are circulating all the time.

There’s probably a lot of reasons this doesn’t happen.

But I suspect I know one reason that it sometimes doesn’t happen.

One way that I identified with her right off the bat – she’s embarrassing.

Before anyone gets mad at me for saying that, I’m not saying I’m embarrassed by her.  I am saying that lots of autistic people probably are.  I can’t explain how I know this.  I just know that she has qualities that I also have, and I have been outright described many times by other autistic people as so horribly embarrassing to look at that it’s a terrible thing that videos of me even exist, or that people look at those videos and pass them on.  

She’s visibly odd in ways that some of us are and some of us aren’t.  So am I.  We’re not visibly odd in identical ways, by any means.  But… I can sort of map out the reaction some people have to me, and map out the way she moves and responds to things around her, and map out the fact that some autistic people are not going to respond well to her.  Also our physical appearance is… I wouldn’t call us ugly (I find people with distinctive appearances attractive, actually – probably an outgrowth of faceblindness), but a lot of people definitely would.  And autistic people are far from immune to judging other autistic people based on things like our weight, face, dress sense, mannerisms, etc.  And while being nerdy and geeky have become cool in some circles, it’s still never cool to be dorky.  Susan and I are dorky.

Also I have to wonder if there’s any element of this related to the fact that she’s famous for something that’s part artistic skill (including both creativity and technical skills), and part emotional skill.  She’s got a great voice, but that’s not what people respond to.  People respond to her ability to put herself into the shoes of whoever the song’s point of view is from, and then translate that raw emotion into a way to use her talented singing voice.  If all she had was a good voice, nobody would know her.  What she has is empathy.

And according to stereotype, autistic people aren’t even supposed to have empathy, let alone rely on empathy to guide our greatest talents in life.  Even autistic people who know intellectually that this is not true, tend to view other people with autism as having talents primarily in technical areas, not emotional areas, and if they are in emotional areas, they’re to do with self-expression, not empathy.  But, in fact, some autistic people are if anything over-empathic to the point it can become painful, like another source of sensory overload.  I’m one of many such people.  She’s another.  And if she didn’t excel at putting herself in a character’s shoes and then expressing the innermost feelings of that character artistically, nobody would know or care who she was.

So I think all of those things add up to why she’s not on many – not on any I’ve seen, but I can’t claim to have seen them all – of those lists of “famous autistic people”.  Despite the fact that she’s world-famous and actually (unlike half the people on those lists) officially diagnosed.  It’s also possible that some of the people making those lists simply don’t know this about her, but I can’t buy that nobody making such a list would have noticed by now.

Mind you, I don’t think she’d care whether she’s on such a list or not.  She doesn’t strike me as someone who gets caught up in the identity of being an autistic person.  She strikes me as someone who sees that as one way of describing some of who she is, but that who sees themselves primarily from outside the lens of autism.  (Which I find refreshing.  People who get too caught up in autism-as-central-identity tend to lose sight of important parts of who they are, even if their view of autism is broader and more positive than the official one.  There’s something dehumanizing about the whole thing that even the most ardent supporters of ideas like ‘neurodiversity’ have never been able to fully remove from the concept of autism.)

The only reason I care, is that… well… I don’t like to see people treated as too embarrassing or too non-stereotypical for recognition of that kind.  And because I don’t know of anyone else who is both officially recognized as autistic and famous primarily for an empathic skill.  Lists of people who all have skills in roughly the same (usually science/technology/etc., sometimes artistic but still in a sense that’s viewed as somehow solitary and unconnected to people) skill areas, give the impression that we can only be good at things in a narrow range of areas.  Or even that we shouldn’t even try in other areas, because those things are ‘not for us’. And that can become incredibly limiting and confining. 

I have a friend who says that people with intellectual disabilities are often stereotyped (even by people trying to “highlight their strengths”) as ‘mindless hearts’, while autistic people are often stereotyped as ‘heartless minds’.(2)  It’s time people recognized that autistic people can be interested in or excel in “heart-related” areas and people with intellectual disabilities can be interested in or excel in “mind-related” areas.  But most of all, it’s time people recognized that all of us have both minds and hearts.

(1) I stopped differentiating between the different diagnostic sub-labels of autism long before the DSM lumped them all together as one diagnosis.  It’s not that we don’t vary from each other in important ways.  It’s just that those ways are not captured by any division anyone has ever come up with to split us up into categories, whether that’s “high functioning” or “low functioning” or purported differences between Asperger’s, autism, and PDDNOS.  Also, in times and places where various diagnostic labels have been used, they’re not always used by the book.  Meaning there are lots of people who fully more than qualified for a straight ‘autism’ diagnosis who were labeled with PDDNOS or Asperger’s because of age or stereotypes.  Age?  Adults getting an autism diagnosis are often labeled with Asperger’s whether they actually meet those criteria or not.  Because, even (as in one person I knew personally, and she was far from unique) in someone who didn’t speak a word until their mid-teens and grew up labeled with a severe intellectual disability, both of which make you disqualify massively for an Asperger diagnosis, the fact that she could talk in her late twenties meant she got diagnosed with Asperger’s.  She actually had mild Rett syndrome which was only discovered genetically after her daughter was born with severe Rett’s – but if they didn’t know about the Rett’s, the appropriate label would’ve been ‘autistic disorder’. 

It may seem odd that I care so much about people inappropriately getting Asperger’s diagnoses, if I don’t see Asperger’s as separate from autism.  The reason I care is that every time you get someone saying “If you made it to your thirties with no diagnosis you couldn’t possibly qualify for an autism diagnosis” or “If you’re talking really well now it doesn’t matter what your speech development was like,” it strengthens the stereotype that “real autism” can’t be missed in children and also strengthens the stereotype that every autistic person capable of talking to you about the matter actually “only” has Asperger’s and not “real autism”.  So it’s actually my objection to the way stereotypes are employed that makes me care about people using Asperger’s as a catch-all term for anyone who went undiagnosed until adulthood and anyone who can use language with superficial fluency at least some of the time.

So there ends my long explanation of that, there’s a reason I put it in a footnote.

(2) It’s more complicated than that.  Some of us get seen as both heartless and mindless.  Some autistic people (even without ID) get thrown into the mindless heart category.  And there’s a huge array of related disability stereotypes in general that I’d love to discuss someday.  But right now I don’t have the time or energy, so I’ll stick with my friend’s basic way of saying it.

LYRICS (”Mad World”, originally by Tears for Fears, as sung here by Susan Boyle, the lyrics are different from the original in some places):

All around me are familiar faces Worn out places, worn out faces Bright and early for the daily races Going nowhere, going nowhere Their tears are filling up their glasses No expression, no expression Hide my head I wanna drown my sorrow No tomorrow, no tomorrow

And I find it kind of funny I find it kind of sad The dreams in which I’m dying Are the best I’ve ever had I find it hard to tell you I find it hard to take When people run in circles It’s a very, very Mad world Mad world

Children waiting for the day they feel good Happy birthday, happy birthday Want to feel the way every child should Sit and listen, sit and listen I went to school and I was very nervous No one knew me, no one knew me Hello teacher tell me what’s my lesson Looked right through me She looked right through me

And I find it kind of funny I find it kind of sad The dreams in which I’m dying Are the best I’ve ever had I find it hard to tell you I find it hard to take When people run in circles It’s a very, very Mad world Mad world

And I find it kind of funny I find it kind of sad The dreams in which I’m dying Are the best I’ve ever had I find it hard to tell you I find it hard to take When people run in circles It’s a very, very Mad world Sad world Mad girl Mad world