Presuming competence: not just about what I *can* do.

As a disabled person, I have experienced failure a lot in my time. I have experienced the kind of failure that can be turned into success by fine tuning the failure. I have experienced the failure that comes from being sabotaged by low expectations or unreasonable demands. And I have experienced the kind of failure that comes from just not being able to do what I am trying to do.

What does this have to do with presuming competence?

Well, the first part of presuming competence is presuming capacity. Presuming that the ability to learn and understand and do new things is there. This is good. I like this. Please, keep believing that I can do things, or at least should be able to give them a good honest try before doing them for me or moving on and putting it in the permanent failure pile. Assuming what you are asking of me is possible here in reality land (deciding to not have a seizure in face of triggers doesn't fall in this category, FYI. And is the inspiring events, plural, for this post), let me try it. I want to try it. I want to fine tune it. Probably.

So, presume I can learn. If I tell you I can do something, or may be able to do something but I need to try it first, run with that. Allow me to try. Help me fine tune if I'm close but not quite. Rephrase. Demonstrate. Whatever. If I think it's in my eventual capacities, and you support that, that is presuming competence and is good.

But. I have failed a lot in my day. There are things I just cannot do. It doesn't matter that I can speak usually or can do a backflip or follow complicated written down chemistry lab instructions or calculate gymnasts' trajectories preternaturally fast, I still cannot hold more than 2 auditory directions in my head on a good day. I still can't read a map in any useful fashion. Whether I can make food without setting it on fire is iffy. I cannot just block sounds out. I cannot sit still and think at the same time. I cannot always make decisions without substantial field narrowing. I cannot always write a thing on demand without significant scaffolding. Et cetera.

When I tell you I cannot do something, presume that I am competent to understand my own limitations. I am not being lazy. I am not manipulating others into doing things for me. I have legitimate support needs. I have workarounds for most of the things I listed above. Slow, ponderous, time and spoon consuming workarounds, but workarounds nonetheless. But the truth of the matter is there are things I cannot do and I know that I cannot do them.

Assume that when I tell you something is not in my skillset and never will be, that I know from experience, or am making an educated guess. If you want me to cross an unfamiliar city on transit using nothing but maps and paper timetables without getting lost? You are dreaming. That is not going to happen. Have I tried this in recent memory? No I have not. But I know:

-I cannot read a map in realtime
-I am significantly time agnosiac
-My ability to navigate places I know very well is pretty iffy, much less new places
-I know the above well enough to struggle deviating from any initial plan, even if the initial plan deviates from me.

So it isn't a stretch at all to say that this is a thing that is not going to happen. This is an educated statement based on my knowledge of my skills and skill holes.

If I say I cannot do something, I do not need to prove to you, and myself, yet again, that I cannot do it. To demand that I show you my inability is presuming incompetence: you are telling me that I am wrong about my inabilities, and my ability to know them, until you determine otherwise. This undermines both my own agency and the ideal of presuming ability. We all have inabilities. It's ok to have inabilities-unless, it seems, you are disabled. Acknowledging a difficulty is not the same as presuming global inability. It's part of seeing me as a whole, really real person. Really real people are allowed to not be able to do things.

Proving yet again that I cannot do something so that you can say you presumed competence, even when I told you something is not a thing I can do doesn't do wonders for me, either. The chances of me waking up one day with that set of skills in infinitesimally small. Forcing me through that particular failure above rather than meeting me somewhere or giving me detailed written directions for several options? That's anxiety attacks. That is an anxiety attack squared, because being late makes me panic, not knowing where I am makes me panic, and plan changes that I have no good way of dealing with? Those are near inevitable, and also make me panic! Putting me through that because maybe I magically obtained abilities heretofore unprecedented? That's actually really mean. Don't do that. It sucks.

The ideal of presuming competence is lovely. I am all for it. But one of the skills we need to develop, and have acknowledged, is knowing where we struggle, where we fail again and again. Do not undermine this very important skill by telling us we are able to do everything but describe our own inabilities. That's not presuming competence. That's something else.

The helper personality scares me...

Some of the scariest people I have ever met are people in helping professions. They're teachers, or therapists, or alt med healers, or whatever. And they have nothing but the best of intentions.

This sounds lovely, but is actually very scary. See, they mean to do good. Often, their entire self concept is built around being a Good Person and their mission in life being Helping People. These are noble goals and all, but when you make them your whole Who You Are, you can become a scary person.

These helpers just cannot wrap their head around the idea that they can mean well all the live long day, but that doesn't mean they are doing well. Some people who are helpers? Their chosen method of helping actively hurts people. And they cannot process this-they are Good People and Help Others, they can't possibly be doing damage! That's the other social skills therapy or whatever, not theirs! They mean well, you see. They are Doing Good. They couldn't possibly be accidentally hurting people!

And they take it as a personal attack. People do not react well to what they perceive as a personal attack, especially against their very core, in this case the idea that they are Good People who are Helping Others. Rather than evaluating if, from the perspective of their victims...uh, clients...they are causing harm, they lash back. They can't wrap their heads around the idea of anything but their intent, as if trying is the same as doing. Their self concept seems to be more important than actually being helpful. It's like it doesn't compute that they could be wrong.

This is really scary. You never know what people are so caught up in this idea, so you don't know how they react if the harsh truth that their chosen therapy hurts people. Unpredictability is scary, as are people who would rather believe I am trying to hurt them because I am an asshole then believe that maybe, just maybe, their intention is not magical.

Classic Neurodivergence: You aren't autism. We are. Shut up and listen.

This was originally posted Sept 23, 2009. I stand by the swearing. Not so sure about the drive off a bridge implied suggestion. Go drive over it and far away, sure. I no longerst would choose to make the ageist comments about juvinility or adolescence either. But I totally stand by the swearing. And have not edited the post in any way.

This was a reaction to that awful "I am Autism" video. Simply ghastly.

**Profanity ahead. It's well earned,**

I saw the new Autism Speaks video shortly after finding out they've got a fundraiser in my stay-weird-pride-and-hippies-and-nonconformity city. And all I have to say to that is:

Autism Speaks, shut the fuck up and get the fuck out. There are a number of bridges here. You like driving off bridges, right? Go pick one but leave us the hell alone. And do the right thing, the responsible thing, and leave your children with a responsible adult (you are neither of these things, either as individuals or a collective) while you do so.

The vast majority of the autistic community utterly LOATHES you, Autism Speaks. Why? Because you purport to speak for us. YOU DON'T. You don't speak for your children either. You speak with the voice of spoilt parents who don't want children, but puppets. You are SPOILED.

Now, there is NO acceptable, none whatsoever, NO acceptable justification for anything in that video. "Faster than cancer and AIDS", REALLY? REALLY? I'm in my mid 20s and haven't died yet. What the hell? Oh wait. Autism doesn't kill you. This is profoundly disrespectful to people with fatal diseases. STOP DOING IT. It's also disrespectful to autistic people. Haven't you heard? We are people. Yep, that child who embarrasses you oh so much (oh poor you. Be a grownup and get over it) is in fact their very own person, and spreading that kind of hate is disrespectful.

No one kidnapped us. We are not the destroyer of hopes and dreams-as awesome as Kassiane, Destroyer of Dreams sounds, that's not how it is. Children do not exist to live your dreams. We have our own dreams. Time to get over the myth of the perfect child--everyone has to, not just the parents of autistic children--and learn to accept that your children are their own people. Time to let them dream their own dreams instead of wanking for DECADES on the fact that they aren't the child you wanted. It's disgusting. It's juvenile. It is narcissistic and it is tired. Your adolescence is over.

Shut the fuck up and go away. Let AUTISTICS speak. Stop trying to rob us of the communication which we fight so hard for. You don't speak for us. You don't fight for us. You fight against us, with lies, hate, bigotry, and your own self centered lack of empathy. I feel for your children, but not because they're autistic. Because they have to live with such monsters for parents. Monsters who fight the very core of their childrens' beings, demonize them to everyone, just to make it all about mommy. Screw that.

Introducing We Are Like Your Child

We Are Like Your Child is a new, exciting blog collective of Autistic (capital A) bloggers, with the occasional allistic disabled poster.

It's for the stories that so often aren't shown in the media: those where we have difficulties and yet we problem solve creatively, we live with our disabilities rather than the whole "in spite of" and overcoming thing. Or the stopping and dripping in tragedy. This is a slice of reality from Autistic people.

It'll be a once weekly blog (or more. Maybe. But once weekly for sure) & I'm sure many people who read here would like to check it out. It's highly unlikely to be as firey as here--it's just a place where we can show things that won't make it into a "Success In Spite of Autism!" type anthology, nor are they the stuff of woe is me human interest stories, nor are they inspiration porn. It's just that yeah, we do have difficulties, yeah, we can work around some of them, and  yeah, we're people even if we can't do some stuff.

So. Some of you might be interested in that. People who find here too political might too. Cuz we are like your child, and that's a good thing for all involved.

Autistic Pride Day 2013

I am jet lagged, so this is going to be quite the ramble.

It's Autistic Pride Day, the day those of us who are culturally Autistic (and maybe those who aren't?) celebrate our neurologies. But what really does that mean? As people always ask me, what is there about autism to be proud of?

I'm proud to be part of the best community ever. We aren't a community with a lot of resources, but we're a creative, loving, generous group, on the whole. The community crowdsourced a friend of mine to Autreat! Most of them haven't even met her yet! (but they totally should). And we got medical care for the sick cat of one of our own. Generosity, we have it. It's moving, how much Autistic community does what we can for each other.

I'm proud of my community for standing up for what is right. There have been several flash blogs this year against hatred of Autistics & erasure of our accomplishments. Whenever one of our number is killed or brutalized, the Autistic community is there saying that isn't right, facing down truly triggering, hateful comments, not allowing evil to win. It's Autistics who have vigils to remember those killed for being autistic. This is a big undertaking, a sad undertaking, and yet we do it because it needs to be done. When a hospital was trying to deny care to an Autistic woman, it was our community that raised holy hell, tied up their phone lines for days, made a righteous stink. Because it is right. Because that is what we do.

The Autistic community I am proud of values each autistic person. My community knows that it's not apparent ability or disability that makes someone matter. My community knows that there is no such thing as "unable to communicate", though there is "not given a way to communicate easily". My community knows that each of us matters-not because of what we can or cannot do, but because we exist. Because we have a right to be here. Because different does not equal broken. Because worth is not measured in what you can do, but in being the best you you can be.

My Autistic community is a daily reminder that I am ok just as I am. It's a place, a family even, where my particular strengths, weaknesses, and inability to let injustice go are valued. They are the reason I survived a few times.

The Autistic community, my chosen family, is why I am proud to be Autistic. I love y'all, and wouldn't have you any other way.

My wibbly wobbly rantings about the murder, yes murder, of Alex Spourdalakis.

I have been too torn up to write coherently about this. So I ranted at a webcam instead. Many thanks to Lynn for transcribing so I didn't have to.

Ohhh wow so that's an attractive face...I was mid sneer apparently (the still of the video is a washed out person who isn't that fair in real life with pink & purple hair and blue glasses making...a face. Eyes are narrowed, lip is quirked). I was very upset when I wrote this, and it was before I knew that Dorothy Spourdalakis was charged with first degree murder, and way before I knew that she'd been offered services and declined them. The sweariness would have been much more so.

Transcript starts here!

This is my second attempt at this since my first attempt was too profane and stuttery even for me. Right now I am so angry and incoherent I cannot write. That’s a problem. Usually I can write. I can’t always talk. Right now I am so angry that ranting is pretty much what we’ve got.

Why am I angry? I am angry because a young man named Alex Spourdalakis was killed yesterday. Yesterday is when I found out about it anyway. You may know that name because Alex was autism famous because he was in Loyola Hospital and he was being restrained and his mom did not agree with the treatment plan. His mom was really big into biomed, the AOA stuff, autism as a physical illness …instead of…as a whole body illness rather than as a neurological how you are. So, we’re going into this with some problematical attitudes, right? So, his mom Dorothy apparently had a custody battle with the hospital because of the disagreements in treatment.

Yeah, ok, so the state made the wrong call here. Alex was found with multiple stab wounds to his chest…in his bed. Let me break that down for you in case you’re not getting it…multiple stab wounds [making stabbing motions] in his chest. There’s important things that live there, like your heart and lungs, you know, things that are vital to life.

His mother and caregiver were found somewhat unconscious next to his bed. I roll my eyes at this because I know where they’re going with this. They’re going all Karen McCarron on our asses. And I will explain that in a moment. But first let me tell you how this is a big fucking failure.

People knew who Alex was. People knew Alex was going through a lot of shit. People knew his mother believed in all the biomedical and [lots of eye rolling] “I can get my child back” bullshit. She had set up the narrative of him being severely autistic, unable to communicate—which is not a thing—violent, etc. And yeah, autistic people can be violent. Neurotypical people can be violent. People who are neither can be violent. However, your kid being bigger than you isn’t a reason to kill them. Just throwing that out there. If you kill your child, you’re a bad parent. Yes, I’m judging you. If you’ve even thought about killing your child, you’re a bad parent. Yeah, I’m being judgmental again. I’ll live with that. Love does not work that way.

So one of the reasons I’m really pissed off is because of the usual [eye rolling] “Oh, he’s in heaven now”. My favorite is the thing that one of the groups that was intended to work towards getting Alex out of the hospital was a letter to Alex in heaven suggesting that he thank his mother for stabbing him in the chest. [Sarcastic eye rolling] “Thank you so much for brutalizing me, it’s my favorite”. Because now, you see, he’s in heaven, which I don’t think exists. And he doesn’t have autism. Ok, so even if there is a heaven, you’re going to go there and you’re going to be the same person, otherwise you’re not the same person who did whatever it is you do to get into heaven. Autism is part of you. Ok, so that’s a whole other rant about how theology mixed with woo woo crap is really fucking dangerous. I’ll save that for another time. So, ok, we have the same old, same old. [Eye rolling] Oh, she saved him from autism. Oh, she was so stressed. If you’re so stressed out you’re going to kill somebody you need help. Now, I’m not saying that in a “oh, don’t judge me” way, I’m saying that as a matter of fact thing. If you think you’re going to kill somebody, you need to talk to somebody about that. You need to explore your options.

So, this lady, she killed her kid. People are going around the internet saying, “Oh, I hope I never get that desparate”. If you’re that desparate, go talk to somebody, leave your kid with somebody that’s not you. Being that desparate is not an option. It isn’t. I’ll take care of your kid if you’re that desparate, and I live on SSI. And that’s from a supposedly good parent that I heard that one.

Other stuff, this stuff is pissing me off so I can’t make a coherent stream of thoughts. So, let’s talk about that suicide attempt, ok? I said she was Karen McKarenning it, because I’m cynical. Karen McCarron, you may recall, killed her three year old daughter Katie killed her daughter Katie on Mother’s Day and then took an overdose of Tylenol or aspirin that you don’t die from. You get a breakfast of charcoal and three days in a psych ward, unless you kill your autistic kid, in which case you get a bunch of sympathy.

I don’t feel sorry for you, Dorothy. I don’t believe your suicide attempt was all that sincere, because you stabbed your son in his chest as he laid in his bed. If you’re going to be violent with your victim, If you want to convince me you have this murder suicide pact going on because you can’t go on anymore, be consistent. If you’re going to poison yourself, A) do some research, B) be consistent. If you’re going to poison yourself, poison your kid. If you’re going to stab your kid, grow some avocados and stab yourself too. The heart, it doesn’t move. It’s in the same place on everybody unless you have some freaky condition and it’s statistically unlikely that you do.

I don’t really believe that suicide attempts when people have just killed their kid are all that sincere. I don’t really think there’s a whole of regret going on. I don’t because I’m a judgmental bitch. I can live with that. If you stab your kid repeatedly you’re not sorry, if you go to the effort to take your kid out of places so you can continue poisoning them with altmed you’re not sorry. If you’re convincing people that you’re saving your kid from autism you have no reason to be sorry because you have an entire world view that says this is what you do. If you can’t fix them, you kill them. That’s like this whole tragedy martyr of autism thing is so common among biomed parents I can’t even….You’re not a hero if you kill your kid. You don’t deserve all that sympathy. You deserve everybody to be as pissed off as I am.

But, you know, people aren’t because all those people at Age of Autism and Autism Speaks have people convinced that Alex was, you know, a burden. And people like me, you know, maybe you should consider not existing, shit like that. And that’s not ok, that’s really not ok. Alex deserved better. His last few weeks, months even, were probably complete hell between the hospital and the…well, ok, biomed says it’s ok to give your kid a bleach enema. I don’t know if that’s what was going on. I’m pretty convinced that chelation which can destroy your kidneys was part of what’s going on. Alex’s symptoms from the hospital sound remarkably like what happens if you do dangerous altmed or if somebody is poisoning you.

I don’t have no idea what was actually going on. Loyola hasn’t given a statement and HIPAA says they can’t tell us what was going on, but I do know that all the gastrointestinal crap that was going on with Alex could have been induced intentionally or not intentionally via application of many of the therapies that DAN doctors or whatever they’re calling themselves now promote. So, this is a tragedy, and this is a tragedy that we could have seen coming. People probably did see it coming a little bit. Because she showed all the signs in terms of belief system. Most of the parents who kill their kids seem to be able to convince people that autism was a burden and it was making everybody’s lives hell and they were saving their kids from autism. Or it was a mercy, or whatever.

Again, if you kill your kid, you’re a bad parent. A bad parent. If you want to yell at me for saying that, that’s cool, just leave your knife at home. So this is something everybody should have seen coming. The hospital should have known better, assuming the hospital thinks that autistic people are people. So, yeah, I’m angry, and I’m upset, and I just stopped crying before I started filming the failed one of these. And we need to do better. Not just autistic people but everybody who purports to care about autistic people needs to do better. And that biomed shit needs to be smacked down. I really do blame that mindset for a lot of the deaths. Society needs to stop saying “Oh, the poor dear, think about her, her child was so impaired. No wonder she killed him. Think about her, take a walk in her shoes”. I acknowledge that I have shoes. These are the ones I was wearing today [holding up shoes], would you like go go for a walk? No, you just want me to walk in a whiny martyr mom’s shoes? Well, that’s not going to happen. Not until acknowledge that my shoes exist. So, yeah, my thoughts are all over the place, and I’m probably going to go cry again because this is terrible and it shouldn’t have happened. And I’m actually angry enough that if someone tells me not to judge to my face it’s going to be loud or it’s going to be tearful, or I don’t even know. Again, if you kill your child, you don’t love them, and you’re a bad parent. That means Dorothy was a bad parent, Karen McCarron was a bad parent. All these folks on this poster are bad parents. And if you think being that desperate is an option, you might be a bad parent. This has been your Tuesday afternoon of judgey bitchiness. Just don’t kill your kids.

Thank you update, with pictures. And Where we're going from here.

Again, thank you everyone who helped with the fundraising to get Mandy to Autreat. She is super excited. It's going to be quite an adventure-Mandy, me, & service cat Purkinje.

The adventuring party:

 

We have purchased plane tickets, the necessary motel room for when one flies to an event on the east coast from the west coast, and set up getting from there to Autreat (YAY).

And now. This was amazing. So where do we go from here?

If you are my facebook friend you know: I am setting up an Etsy to sell crafty goodness, all the proceeds of which will go into an Autreat travel fund to get people there. Making the things for the donors was fun, and Mandy knits, and a friend of mine makes pop culture counted cross-stitches, and there's a huge pool of talent. And people buy crafty stuff year round. And we can make things that are relevant to more than just our community, which is important I think to get the momentum going.

I'm excited. Overwhelmed with half formed ideas & the amount of purple beads I have, but excited.

Some things I made this year:

Things I will make throughout the year? Similar, and medicalert bands, and left/right bracelets, and whatever else I can make. I want more friends at Autreat next year.