Who are you really fighting for? (tw: medical abuse, Torture, murder, ableism)

I've been thinking lately about the way that we frame autism and especially how we do so when it comes to tragedy and abuses toward autistic folks. It's never ending, this string of murders and abuse and attempted murders of autistic people. There was Alex Spourdalakis, then Issy Stapleton (who gratefully survived her mother's attempt on her life ). Then there was Jaelen and Faith Edge.

Many people, activists in their own right, chose one of two options. They either tried to use the "parents were stressed" excuse, thereby creating an even more difficult world for those among us who do have mental illnesses (because if they just snapped, we could too). Or they're entirely silent. The first I understand on an intellectual level in that we are always trying to find an answer as to why (we know why - autistic people are dehumanized and reduced to a set of behaviors, rather than treated like individuals and people). The second baffled me until now. Why were feminists especially so silent when it came to autistic people, especially women and our rights to bodily autonomy?

The case of Kade Hanegraaf finally put this into perspective for me (this, by the way, is the autistic teenager who also has Tourette's whose vocal cords were cut to stop vocal stimming / "screaming"). It's because feminists don't see us as fully human. Oh.

Feminists would rather sympathize with a mother than with an autistic girl such as Issy who has been abused and nearly murdered by her mother. Because the mother's mental health is more important than an autistic person's life and right to bodily autonomy. Because consent doesn't tend to matter if a person can't speak.

I am angry. This is what intersectionality is about. You aren't fighting for equal rights if you won't go to bat for trans women, for women of color and for disabled/autistic women. You aren't fighting for everyone's right to not have changes to their body made without their consent (and in this case, it appears for the convenience of the parents) if you won't go to bat for an autistic child who had their vocal cords cut. Where is the coverage on how he feels? It's nonexistent.

It makes me angry that this surgery is illegal to perform on dogs (it's called debarking), but is legal for an autistic kid. It makes me terrified for Kade that his ability to scream has been taken away, that a person who is part of a group that is  already prone to being abused now has less of an ability to express a "no" in a way that gets attention.

That should bother you. That we go to bat for parents, and mostly mothers, and sympathize with their stress, but don't worry too much about autistic kids and their feelings, even when they're girls or teenage women.

Sometimes, I Just Can't Words (tw: Autistic Murder, Torture, Therapy)

Even my inner English major is cringing at that title. But really, there is little else that explains within its very nature how elusive words have been for me. Ordinarily, I'd be posting walls of text in various corners of the Internet, but I've found over the last few months a little short on communication ability, verbal or text based. It's frustrating. You'd think that the older I get, the easier my coping methods would become. Well, while they are all quite practiced, my coping methods aren't all that effective as I'd like them to be. It's been a rough few months. I lost a friend. I found out that my family's future is going to change very soon (with my husband leaving the Navy in just two weeks now). And of course, a lot has happened in the autism world to shake us all. We have new names to add to our dead. We thankfully, won't be adding Issy Stapleton to that list, despite the attempt made on her life by someone who supposedly loved her dearly. I've become frustrated with those who venture into Aspie elitism and who make disparaging remarks about the "low functioning" among us, as though functioning labels really were worthwhile and meant something in the first place. I've become frustrated with parents of autistic children (who I refuse to call "Autism Parents" because I feel like that is an appropriation from autistic people, especially autistic people who are parents), who claim that there's a divide in the "autism community" after the murder of Alex and the attempted murder of Issy. There is no divide. You won't find autistic people attempting to justify murder. You won't find us asking for more services. You will find us asking for the media to care more about the murdered or nearly murdered autistic teenager than about how "violent" they supposedly are/were (after the parent put them through torturous and/or abusive therapy, some not even medically warranted). I've had too many thoughts and emotions invading my mind and I'm both emotionally and physically exhausted. Please forgive me for the radio silence and in the meantime, listen. Forget about how angry you think a person is, and how blunt their message might be. Think about how far we have to go for understanding, acceptance and accommodation/access. Think about Issy. George. Alex. The people who are tortured daily at the Judge Rotenberg Center. Then tell me I'm being divisive.

What it's like

I'm writing a bunch of these real-life experiences so you, dear reader, can understand what it's like to be me.  I find that people who meet me, either online or offline, often get the wrong impression of what kind of a person I am and what makes me tick.  And of course, it's different depending on how you come in contact with me, of course, and I'm far more articulate online than I am in meatspace.  I find that my words are better typed than they are spoken, and some of that has to do with cognitive issues and communication issues, and some of it just plain old run of the mill anxiety (think about your high school experience and whether you ever had to give an oral report.  Imagine that anxiety times 100 and yep, that's pretty much me when I'm trying to explain something).

So today, I'm going to tell you what it's like to be Autistic/disabled and work a low income job because of it.
I am a crew member with McDonalds.  No, don't tell me how bad the food is for me.  No, don't tell me that I'm just a cog in a machine and that a monkey can do my job.  That isn't helpful at all, and I've heard it all already.

I actually enjoy my job, mostly.  I know that there's no job security here, and I know that there's not a lot of room for error and I actually have to work quite hard for what most people would consider "easy".

I work in the drive thru cash register (referred to by employees as "back cash", because we're in the back of the restaurant).  I've been working here for just over 6 months, and yes, I actually do love it.  I like the routine, and I've never had a problem with my auditory processing issues if I have headphones on, so running the drive thru isn't really difficult on that end.  Also, my interaction with people is minimal, and mostly, there's not a lot of noise that bothers me.  I'm also fairly good at doing simple multitasking (doing something with my hands while I'm taking an order, for example).

So this works out.  I have a few issues at work, and they do allow me to wear one ear plug on the ear that isn't covered by the ear piece so that any extra noise from inside the restaurant isn't overwhelming.  I have to have someone help me with a specific task in the morning regarding the iced tea and coffee containers (it's a motor skill issue that includes inserting a tube into a very small hole and screwing on a nozzle).  Basically, I don't receive a whole lot of accommodations, and the only issues I've had at work have been very small.

Until today.

Lately, they've been sending new hires to me to be trained.  I'm just an hourly crew member.  I make minimum wage and I'm not being paid to train, but what happens if I complain? Well, I could lose my job, working in a state where there is at-will employment.  So as much as I would like to earn the extra money as a crew trainer, so far, I haven't pushed the matter because I want to keep my job and they do know that I'm doing fairly well in the position I'm in.  So not upsetting the status quo.

Well, having said that, today they sent me a new hire and that was fine and I don't mind it (though I'd love a little warning because a 4 hour shift training a new employee requires a great deal more thought and energy than a 4 hour shift just running the cash register and taking orders).  So I start training him, and he acts like a freaking know-it-all.  Which happens with some people, and that wasn't what bothered me.  Then he throws out comments about how a person is dressed, how fat they are, and how long they take to place their order.  Then he throws out an "r" slur, and I finally have to say something.  I don't even have the words to properly rebuke him for this comment (where he's laughing and saying "what a r****d").  So I simply tell him that isn't very nice.  He, of course, like most people, respond with "I was just joking!!" and I, in turn, respond with an "I don't care if you were. That word is hurtful."  It wasn't my best refutation, to be certain.  But it's what I could do in the circumstances.

I just...I don't know what to do now.  He's new, and he's relatively good at the job.  I just need to probably sit down with one of my managers and ask what I should do next time.  Because it was basically 3 1/2 hours of misogynistic, slut shaming, fatphobic, ableist comments, and I don't want to not work there anymore, because I need the job.  But so many things about this experience were just not okay, and I can't sit completely idly by either.

"Free Speech"

I exist in a lot of social justice sort of spaces. It's good. It really is. I learn about groups of people who are both like and unlike myself and the issues they/we face.

I didn't used to be able to stand up for myself and others, either online or in meatspace  (in other words, the "real world", though I despise that term).  I've learned a lot and now I'm better at it. So when someone does a thing that is harmful, and people speak out, I find that sometimes, they will apologize for their behavior, which may be simply ignorance.

Some people try and rationalize their behavior, try to make excuses.

The worst thing in my opinion  that a person can do is say "but free speech"!

Free speech doesn't entitle people to say whatever they want to without being called out by oppressed groups. Free speech doesn't entitle you to refer to people using slurs. Free speech entitles you to not be arrested for speaking your mind. Your speech is protected under the law, but your speech still has consequences. When you make generalized statements' about a group of people or you use a word that hurts us (yes, casual use of the r word included, along with calling random objects "so gay"), you don't get to complain  that we're too sensitive. Yes, that might be true. I spent too long building up so many walls and yes, now I'm going to say something.

Free speech has consequences of its own. You may not get arrested for it in the US, but you will face backlash if you are ableist, racist, sexist, etc.

"I don't know"

No, really.  Sometimes I just don't.

I took my kid to Disney World yesterday, and that was so much fun (mostly; we both had some issues there stemming from being autistic in a hot, crowded place).  On the way home, I just felt drained, and I kept thinking maybe I was dehydrated, so I kept drinking Powerade and water, and I still felt that way this morning.  It was like having a hangover, but I hadn't had any alcohol.

Oh.

Sensory overload.

Shutdown.

This is what it's like to be Autistic.  Sometimes, you just aren't aware of why your body is doing something, and you find yourself utterly confused as to what you're feeling.  So if someone were to ask me "how are you?" late last night or early this morning, my response would have been "I don't know. I feel off, but I don't know why, or what's wrong."  I didn't feel sick, not like stuffy nose sick, or over tired or stomach flu or anything identifiable.

It's been a long time since I felt the way I did early this morning.  Probably years, really, though I've had minor incidences in the interim.  I had difficulty doing my job this morning, which is why I was thankful that I was only scheduled for four hours this morning.  Otherwise, I'm not entirely certain what I would have done, because I was slowly mixing things up (and add to that the fact that overnight, the prices for many popular items changed).

My kids don't go back to school until Monday, and so I took them this afternoon to a somewhat noisy atmosphere.  It's never as bad as it was today, and I knew when my 7 year old pushed another kid after he screamed in her face, that we had to leave.  I don't know how to explain things like that, because they tend to happen when I'm overwhelmed as well.  I don't know how to say "She's autistic and he was literally causing her pain by screaming in her face, and she did what she could to communicate in that moment "get away from me". "  How do you do that when you yourself want to put your hands over your ears and spend the next 20 minutes in the quietest place you can think of and just rock until you feel better?

Most people don't understand.  I'm grateful to be able to post this on the internet where there are quite a few people who do.  Maybe one day, I'll be lucky to join my friends at places like Autreat and other spaces where Autistic people are.

For now, I'm just grateful to not be completely alone.

"Behaviors"

I heard a word yesterday that ruffled my feathers quite a bit, to use a common phrase.

"Behaviors".

I read a well-meaning person, a "tutor" (which, in my experience, and in accordance to the discussion in the post and in others, really means "non-certified ABA therapist") write about one of her charges, one of the autistic children that she works with on a daily basis.  This child had caused her harm.  He had bit her when they went to the park, and I don't know the circumstances behind that, and I don't know what happened before and after, but she wrote the phrase "Behaviors suck."

Really?

Instead of, I don't know, doing what so many of us are taught to do, to put ourselves in the other person's shoes, she chose not to.  She chose to chalk it up to this kid being bad, with no understanding of any reason why he may have behaved in such a way.

Autistic people commented on her post, and explained to her some possible reasons why he would have behaved that way.  We explained that her behavior of taking him to the park, wanted or not, indirectly caused his behavior, which was biting his tutor. We didn't excuse his behavior.  We didn't say that she was wrong for feeling physical and emotional pain because of that.  We simply asked her to consider another point of view.

And that was deemed as an "attack".

When I was 12 years old, I spent one summer day indoors at the allergist's office.  Back in those days (1993), my parents and grandparents believed that my problem was either allergy related or vitamin deficiency related.  In those days, Asperger's didn't exist, and autism wasn't a diagnosis often given to people who could talk, at least not where I lived.  That same year, I had been diagnosed with ADHD, but they didn't really believe it for a long time, so I saw an allergist.

Well, that day was long.  There were a lot of people in the waiting room.  The lights were overwhelming.  I had just come back from lunch, and someone was wearing some really off-putting perfume.  I couldn't focus on anything much.  We were called back, and I did not want to go.  I tried to express that verbally, but that didn't work.  I tried to explain I needed to get out of there, and not because I was afraid of needles.  Not because I didn't want all the help I could get.  But because it was all too much.  Still, my mother wouldn't listen.  So I hit her.  Did I feel bad about that? Of course I did.  We've discussed this incident since then, and I think she understands more now than she did.  But I was an autistic person who tried to communicate in a way that my neurotypical parent could understand, and she ignored it.  So I communicated in a way that I knew how, and yes, nowadays, that would be considered a "Behavior" and I'd have a negative reinforcement applied were I in ABA therapy.

Again, behavior is communication.  

Why is it so difficult to understand that when our behavior is ignored, when our attempts at nonverbal communication is ignored, we will do whatever we possibly can do in order to get the message out?

Why is it more important that a child do something they do not want to do than respecting their autonomy? Why do we not respect a child's right to say no? We advocate for them to say no to a good number of things (drugs, sex, etc), but the lack of control an autistic person has over their own body, their own decisions is appalling in many situations.

Listen to your kids.  Listen to the autistic people in your lives.  If you are a therapist of any type, a "professional" in the world of autism, I charge you with this -- listen to what autistic people, even those who have no children or have never worked with children have to say.  Likely we will have some insight into why a person would react a certain way in that situation.

**I do not advocate for ABA therapy, though I understand that a lot of things that didn't use to fall under ABA now do, and it is not all equal.  I don't think any child needs as much as doctors often advocate for, and while it has certain merits (like breaking tasks into small pieces and working step by step), in many ways, ABA is extremely harmful.  Read more here.