Wednesday, August 22, 2012

Disability-first Language

Warning: this post contains strong opinions. It's not mean, but it's spunky. Are you ready?


I think people-first language is stupid. It takes the pride out of our disabilities. Like we have to hide them behind a bunch of 10 point politically correct vocabulary words in order to make ourselves valid.  
"You're a person with autism!"

No. I'm an autistic person. Emphasis on the autistic. Try calling a Black person a "person with Blackness" and see how that flies (I'll give you a hint: it won't.)

I don't want to feel like I have to make my disability an appendage of myself, like it's something I can tack on as an afterthought. It's a syndrome, not a scarf. I don't just "have" autism like I have an obese Siamese cat. Yes, I have autism, but it's more than that. Being a "person with autism" isn't like being an autistic person. As a person with autism, I'm not acknowledging that autism makes me who I am. That my brain is an autism sundae, all wrapped up in autism with autism on top. A "person with autism" has forgotten that you can take the autistic out of the sentence, but you can't take the autism out of the person. As an autistic person, I'm putting it out there right away. "Why yes, I am autistic, thank you." As an autistic person, I wear my autistic brain like a mushy grey badge of honor. I'm proud of that autistic blob of nerves, and I refuse to smother it under piles of political correctness.

Let's not make this all about autism, now. Autistic culture has exploded in the last decade or so, and at this point we're pretty much crawling out of the woodwork. Aspies are cropping up on television shows everywhere. Autism is now a buzz word. But we're not the only subculture within the disability community. You can probably guess what's next: Deaf Culture. Deaf Pride is one of the largest and strongest movements in the disability community. And within that movement, people-first language has for years been rejected and replaced with Deaf-first language. Deaf, when used in a Deaf Pride context, is spelled with a capital D. In ASL, this is termed "big D deaf." Because being Deaf is an indicator of one's culture and a source of pride, a Deaf person who uses the big D deaf label will be averse to the use of people-first language to describe them. (disclaimer - not all deaf people are involved in Deaf Culture, and so they don't all feel this way. This only applies to Deaf people with Pride.) Regardless of your disability, rejecting people-first language and using disability-first language can be a source of pride and enhance the sense of community experienced by those involved in disability culture.

In closing: I'm not just a pale, sorry vagabond carrying my disability wrapped in a kerchief on a stick. I'm a disabled superhero, with the power to speak out (and to be a weirdo.) Autism is my red cape- I wouldn't be me without it. Up, up and Autistic!


Friday, April 20, 2012

Capability and contribution

People with CP who are assumed to be "retarded" but who are then discovered to be able to communicate with their eyes and write dissertations. People who are "severely retarded" but who could make progress if somebody reached them early enough and with enough wholehearted dedication.

If you do not look for a possibility, all you will find is a disability. 

Everyone has hope if you pursue it. Our problem is not enough treatments, not enough early assistance and not enough confidence in the human mind's ability to expand. You know what part of the schools get the most budget cuts in many states? You guessed it, the group of us who need the most assistance.

Temple Grandin: she smeared poop, she didn't talk, she screamed. But she was helped. She is the leading person in her career.

Carly Fleischmann: She hit herself, she had frequent meltdowns, they talked about her like she wasn't even there. Now she speaks with a computer, takes advanced placement classes, and wants to go to UCLA and become a journalist. She doesn't even talk with her mouth.

Stephen Hawking: because of his ALS, he can only move his head to type. He is one of the world's most renowned physicists.

Helen Keller: she flew into rages and was violent, she had no speech... her parents didn't know what to do with her. She went on to become a writer, a public speaker, and a legend.

I believe that capability is not stressed enough and that is why there are not jobs for some, because we don't make them available. Can you only communicate by twitching? Be a public speaker, a writer, a physicist, something that lets you use what you have in your head: words and brainpower. Plenty of people make plenty of money just because they can use their brains. Are you really a very intellectually challenged person? First, someone should have helped you better. You could have made at least some progress if you had intense help from a thoroughly dedicated person. But you can still be an artist or work with animals or with human beings who need love. Just think of the amazing therapies we could have if we let people with severe challenges spend time with people who needed compassion. That's what many therapists get paid for. My counselor mostly just had to listen to me and be kind. At this point my problem is pretty much with the whole world's view of the matter. I believe that if we were more integrated, people would see what we are capable of.

An anecdote from my dear uncle Pat: 

"A wonderful experience; some time back I was at a neighbor’s house along with some other folks; six all together. This one lady there; (not to sound harsh) is somewhat slow; some may say she has a very low IQ. That being painfully said, no one was talking to her; she was cut off a few times when trying to speak.

I started to talk with her and found out her interest were the local animals in the woods. She feeds them and observes them. She told me more about the animals than I may have ever known. She knew how many cubbies of quail are around here. She has named many of the animals and knows their habits and even some of their individual personalities. Want to know when the humming birds will show up, just ask.

I had a question for her because It seems like every day I would have a new gofer hole spring up in my back yard and I mentioned it; she said their gone now so no more new holes will show up and she was very correct, no more have.

It was fascinating and soon the others listened in and before long the entire group was almost mesmerized by what they were hearing. Everyone learned a great deal about whom our animal neighbors are and it made me feel like the animals are family; they are family to this lady and that’s for certain.

It goes to show that a little respect can go a long way and no matter whom it is they have a gift for you. It seems that offerings don’t hide from us; we hide them.
That lady made some friends during this gathering; friends she should have already had. Everyone has a deserving place on our little blue planet, everyone."

Great thanks to Kao for starting up my brain and making me make sense!


Wednesday, January 18, 2012

Theory of mind is not all bad

I am going to respond -- in the gentle and understanding fashion befitting someone claiming to have overcome many Theory of Mind difficulties -- to an article written by an autist trying to reexplain Theory of Mind. The author believes that Theory of Mind is not an accurate explanation of autism. Read the article here first:

I only partly agree with this rewriting of that passage, but maybe that has to do with subconsciously still having some difficulty grasping that not all experiences with autism are the same. I have struggled with theory of mind, and I have never seen someone as a clone of myself. I simply have had difficulty understanding that it was possible for someone to feel a certain way. As my experience grows, so does my understanding of other people. It doesn't mean that I never knew other people existed or that I did not have a unique sense of self. It simply means that I struggled to understand exactly what it meant to be not me. I fully understood the spatial limits of being an individual. Furthermore, I claimed to have an understanding of individuality, but that understanding was shallow. Many typically functioning Americans have the same challenge. It is simply a struggle to understand someone else's point of view. This could have to do with my having AS/HFA rather than Kanner's autism, which I believe differ only in presentation. What I struggle to understand with this passage is the author's thesis--or apparent thesis--that it should be called Theory of Self rather than Theory of Mind. I fail to see the difference. I'd like that explained. I also do not understand the concern about the conclusions drawn from Theory of Mind. Are they not the same conclusions drawn from Theory of Self, but subtly reworded? I'd like that explained as well. Is Theory of Self also considered to be a malignant theory?

I don't feel that Theory of mind is inaccurate. I simply believe that it needs to be examined more closely, as do any methods or theories pertaining to autism. It is a tool that can be expanded on in any way, and is useful in understanding the autistic mind. Anything that attempts to promote understanding of the autistic mind is worth looking at. I also don't believe that we are incapable of compassion. Since my theory of mind has developed, I have developed great empathy (for an autie) to complement my great compassion. It is much easier to express compassion when you have empathy, a product of Theory of Mind, to boost your understanding of another's situation. Developing theory of Mind has helped me to become a better human being and to better demonstrate my good intentions. Good intentions are difficult to demonstrate, though obviously not possible to demonstrate, when you don't fully understand all aspects of the situation. The whole point of Theory of Mind treatment is in helping the autist to understand Theory of Mind so that we can understand why we should do certain things for other people. rather than simply that we need to do them. This not only helps the autist to treat others kindly but, in fact, to be treated kindly in return. Autism is much more than simply Theory of Mind difficulties, but when we develop Theory of Mind, we are better able to see what else we struggle with. It's like taking your blinders off. Certainly an intriguing article.

Tuesday, January 10, 2012

Using our nice words

Taking a deep breath and swallowing a perspective pill. Standing up for your rights and defending yourself does not mean being militant. Make that the mantra of the day: "assertive, not militant. Assertive, not militant."

John Elder Robison's comment about twisting words hit me in the gut. It's time to disagree with tact. Ah-heh-hem:

I only felt upset because I am what is considered a high functioning autistic person and I felt like Mr. Robinson was making generalisations about 'my kind' that did not at all match who we really are.

I agree with Vicky's comment, "Well, if I came off as mean-spirited, I sincerely apologise. I guess I'm just sick of the constant drumbeat of criticism surrounding self-advocates (not from everyone, but enough people) and what our motivations/goals may or may not be. "

I felt unfairly judged and lashed out. It's something I'm working on.

Let's try this again. *humbles self*

 I believe that everyone needs to be given a voice and that everyone's choices need to be respected no matter how they are communicated. I grow nauseatingly weary of the NT/high functioning/whatever else community assuming that there is 'nothing going on in there' when someone is nonverbal, and therefore choosing not to offer alternative communication options of any form. I have a friend who blows kisses for to communicate 'yes' or 'I like that'. Not everybody wants to 'listen' to him. I kind of took it out on Mr. Robison. I stand by my views, but I won't bite anymore. No more Miss Mean Kitt. Sorry for being so... grrr.