Autistics Speaking Day

I want to say something. So here goes: FUCK.A bunch of text, including *(#! #W:# and similar text, to stylistically represent internet cuss word obfuscation

Seriously.

No, I’m not trying to make the blog unsafe for kids (that said, I’d love to meet the kid who hasn’t heard the word “fuck”).  But this is a huge part of what I want to say: we will say things people like.  And things they don’t.

We’ll cuss. We’ll insult people. We’ll talk dirty. We’ll lie. We’ll do all the things that the sanitized, nice, touchy-feely movies about escaping from autism or about how there are geniuses in the autistic population won’t say.

We say – if we’re allowed – these things even if we use speech devices. Too often, we’re silenced by being given devices that don’t speak these words. (hint to parents: if your child uses a speech device that uses a language system – not just spelling, but a word-based language system – and it doesn’t include some words you don’t ever want to hear said, the vocabulary is too small for your kid) Seriously, kids cuss. So should autistic kids. Just like neurotypical kids, we need to learn what is and isn’t appropriate in what context. Whether you like it or not, it is appropriate for two fifth graders to share lists of cuss words with each other. It’s not appropriate to do so in the hearing of an adult. That’s a pretty important social lesson to learn – that your communication needs to change based on audience. How do you learn that if you’re only options in language are always appropriate for the adults?

We say we’re horny. That we’re aroused. That we want to have sex. Maybe even that we want to fuck. Just like a neurotypical does. Sure, there are all types of sexualities among autistic people, including asexuality, but most of us aren’t asexual. So we want these things. And need to talk about it. Yes, there are more and less appropriate places. And, yes, we may or may not have our parents’ moral values. But we need the same rights that any other adult has – the ability to express our sexuality, including expressing it in ways that while legal may not be what our parents would like.

Too often, we live in group homes or institutions where the staff fears the complications that a sex life would bring into their own jobs. Or have religious views about what sex is or isn’t okay. That’s fine if we willingly agree to those rules and have real options and places to live that don’t include those rules. But most of the time, we don’t get that choice when placed into group homes or institutions – we have to take what we get, or run away. A neurotypical might choose to live in a monastery. An autistic shouldn’t be forced to. Yet, studies have shown that many – quite possibly most – group homes ban homosexual relationships while allowing limited (usually way too limited) heterosexual relationships. It’s another place where our desires don’t matter.

We also need to be able to say “NO.” As in, “No, I don’t want to go to work today.” Or “No, I don’t want to eat that slop.” Neurotypicals get to do this. Sure, there are consequences (although often we get away with some of this – how many people use a sick day when they aren’t sick?). Heck, sometimes a neurotypical might wake up in the morning and decide – for better or worse – that going to work sucks, that there is more in life than their job, and that they really don’t want to go to their job. Ever again. Yep, that causes unemployment sometimes, but it’s something many neurotypicals have done sometime in their life. They were allowed to. Sure, there are consequences. But they weren’t prevented from making the choice in the first place.

So I guess that’s my theme: if people want us to speak, you need to let us speak. Even when we say shit you don’t like. We’re not pets, we’re not puppets. We’re human. And that means you won’t like every moral choice we make. Just like I won’t like every moral choice you make. That’s life.

 

Notice Anything Missing?

frontlineFrontline (PBS) did a program recently on assisted living facilities (you may be able to watch it – I don’t know if there are geo restrictions or not, but I can see the video as a US resident).  For people who don’t know, these are the mostly unregulated places that are sold to older people (and their families) as “better than nursing homes.”  However, as this program explains, they too often come with problems too.

But, that’s not why I’m writing this.  I’m writing because something was missing from this program.

No, I’m not writing about the program’s bias towards nursing home care (you need nursing home care to prevent bed sores in elderly disabled people?  Really?!).  That was a problem too, but that’s not what I’m writing about.

I’m writing that not one single resident of an assisted living facility was part of the program.  Not even one.

Oh, they’re crazy batty old folk.  Why would they matter?  Why should their voice be part of a program about how to treat old folk?

I’m kind of used to this.  I’m kind of used to watching TV programs about autism that don’t include any autistic people (but do include plenty of parents, researchers, doctors, teachers, and staff people).  And I’m used to us being excluded from the story when one of us is hurt, abused, or murdered.  Heck, we’ll hear how hard it is to take care of an autistic person, but we won’t hear how this type of thing makes autistic people feel.  Or what we might want done about it.  We don’t matter.  We’re just crazy people without emotions.  Ya, right.

Apparently older people are in the same category, particularly if they have dementia.  Get a diagnosis like that and you can’t possibly know if you’re being taken care of or not, right?  Uh, no.  You can.  Surely there was at least one person in one assisted living facility somewhere in the United States who had an opinion on their living situation that was worth hearing.  Maybe they like it.  Maybe they hate it.  I don’t know.  I didn’t get to hear them.

I’m sick of the people affected being ignored when this type of thing happens.  Yes, I’m used to it too.  But that doesn’t mean we should be silent.  Shame on you, Frontline!  There was a story there.  But you missed the most important people in that story.