mouthporn.net
#nothing about us without us – @nekobakaz on Tumblr
Avatar

Wibbly-Wobbly Ramblings

@nekobakaz / nekobakaz.tumblr.com

Hi!! I'm Corina! Check out my About Page! Autistic, disabled, artist, writer, geek. Asexual. nekomics.ca .banner by vastderp, icon by lilac-vode
Avatar
reblogged

“To Siri With Love” 2.0 has Emerged:

So someone recently brought to my attention a new “autism book” that is supposed to hit the shelves soon.

I’m not gonna go too in-depth. The book is called “Autism Uncensored” by Whitney Ellenbee and it’s, as you may have guessed, another “woe-is-me-autism” story.

A fellow autistic did a review on it and Whitney responded. You can read the review AND the comments here: 

And as I hope you will all be willing to stop this book from hitting shelves, there’s a petition as well:

If you want more info from the reviewer about what she’s been going through between the emails from Whitney and her husband, you can go to her blog here: 

Whitney is absolutely nasty in her treatment towards Kaelan. Even if the intent was good, she refuses to acknowledge that this book is hurting thousands, if not nearly every. single. autistic. person in existence. That makes it a thousand times worse in my mind. She, like Judith Newman, is making excuses for this book and seems to seek to discredit us.

I know you two are highly influential in this community. Wanna help a gal out and stop this book?

Another dumpster fire of a book to burn…

Avatar

I wanted to ask you this question specifically because I think we’re in similar situations. I’m applying for a four month intensive that will give me a Developmental Disability Counselor certification and a fast track to employment in this field. The only catch is that I will have to take a course called “Introduction to ABA”. I realized that in order to get to what I really want (changing the system from the inside and being able to truly live “Nothing about us without us”), I’m going to have to submit to the ABA course and recognize that it’s probably not the venue to start explaining why it’s bad. I was also advised to use “Asperger’s” on my application (since disclosing is actually my selling point in this situation) instead of “Autistic”. 

The actual question is: Is it OK for me to do these things? I feel like I’m betraying my community by doing this, but I do have my eyes on the prize, and I realize that in order to get through the door, I’ll have to make some sacrifices. My adviser told me that once I’m employed there will be room for me to start improving things for us, but do you think the community will accept that I’m doing this for the time being?

Oh gosh, I love this question so much because it deals with a whole lot of really big things that are also really hard things.

When it comes to ABA, you are right. You have to get through the class in order to make the changes you want to make. Without, you are excluded from the positions of power that allow you to affect the most change.

So take the course. Don’t just take it though, excel in it. Be the best student you know how to be. Ask questions - not to be subversive or discredit the practice - but to learn everything about it that you can. It is perfectly valid to learn the ins and outs of ABA so that you can undermine it.

It is so exceptionally important that the people who have been abused by ABA are the people that lead to fight against ABA. But having working knowledge of the practice from the other side is another important aspect of that fight.

Pathos and ethos are equally important in that each has a role in affecting the people around us. Some people are going to be swayed by the emotionally charged appeals of those who have suffered abuse, while others are going to be swayed by the appeal to authority. Those of us who have been through ABA are the emotion, those of us who learn it are the authority.

When you put those two together, you have the most universally convincing argument possible. I wish we could just take people at their word, but I’m also a realist, and recognize that in the world we live in, we need both voices.

Even so, there are ways that you can be subversive while also attending the classes. Let’s take person first and identity first language, for example. Most people are going to push for person first. You can say that you prefer to use autistic, which is the standard used by the self-advocacy groups like ASAN.

If anyone calls you on it, you have two routes: 1.) state that APA guidelines allow for identity first language or that 2.) if they would like you would be happy to provide a citation for the use of identity language. In fact, it is not exactly uncommon in academic publications that use identity language to see a citation for a study on the need for identity first language. I suggest adding one of the common citations for that into MS Word so you can insert it easily in your preferred (presumably APA) formating.

You can also reframe questions in ways that don’t make accusations but do get other students thinking. Instead of saying, “ABA causes PTSD,” for example, you can ask a questions like, “I read that some people that went through ABA were later diagnosed with PTSD. Obviously ABA does what it is supposed to, but how do I address parents’ concerns about harmful effects? Are there any studies you can recommend regarding long term effects?”

I have yet to have anyone do anything other than blow that question off, but honestly? That’s all you need to start changing the minds of people who are open to change.

Keep yourself educated on studies in other types of therapy. CBT has proven effective, and so has putting the parents through “Awareness” training (put another way, ABA to make the parents understand autistic perspectives). Seek things studies out, and if you have the opportunity use them. Have to write a paper on ABA? Rather than frame it as ABA is bad, frame it as self-advocacy groups have pushed back against ABA, do their arguments have any merit? Cite long term studies on ABA or the lack thereof, and frame it as, “if the advocacy groups are ever going to be onboard, these studies need to be done to address these concerns.”

This, btw, is pretty much how I handle all of my psych classes. Rather than assault the institution directly, I ask questions that I know are loaded or unanswered and leave it at, “it seems prudent to address these concerns.” This is especially important with ABA because while it is awful for many reasons, it is effective. Like, it does what it claims it does. So don’t even try, at least not in that setting. But that doesn’t mean you can’t be subversive even as you toe the line.

As for the whole Asperger thing, I wouldn’t personally do it because I’m that girl who would dare someone to turn me down on the basis of my autism, but I absolutely do believe that when you’re dealing with the hierarchy of stigma it is okay to call yourself an aspie or an HFA.

The simple reality of it is that people who want to work in that field are a dime a dozen. There just is not a shortage of people. In order to Change the World from the inside, you have to play by their rules, at least for a little bit. If you don’t, they will just ignore you.

Put another way, respectability politics of any kind is bullshit. But I have no problem at all playing respectability politics to subvert an institution.

There’s a theme in all of this that I want you to consider: You are using their tools against them. That is so, so, powerful when fighting for marginalized individuals, and there is nothing wrong with it. It is and always has been the primary strategy of subversives throughout history, for good or bad.

I have a lot more thoughts on this, but this is already long so I’m going to call it here. Keep your eye on the long fight. Let those of us who can fight the now fight. We need both.

Avatar
nekobakaz

it might be a little more confrontational, but from what I can see in autism research, studies don't actually hold up to scientific quality. A lot of studies done on small groups, which are then held up as proving to support ABA works. In my research methods class, I was told that a study needs to have at *least* 2000 participants in order for the results to have significance. So it's not even that ABA is supported by science, it's only supported by the low-quality of studies that wouldn't be looked at as significant in other fields. And they claim that they have to do small studies because gathering a sample size is "too hard" with the way autistic people are so diverse. So that might be another angle you can look at, if you're feeling up to it.

Avatar
Let me just say this right now. The national conversation about autism has been functioning radically outside of the usual disability norm by excluding people with the actual disability in the conversation. The phrase, “Nothing About Us Without Us” is not just a hollow slogan. It’s meant to remind you that a conversation about disability can only go so far without the involvement of those with the disability.
You are using an unsupported browser and things might not work as intended. Please make sure you're using the latest version of Chrome, Firefox, Safari, or Edge.
mouthporn.net