Tuesday, December 1, 2009
Hateful Resources
But when it comes to Autism Speaks shirts, I have to play devil's advocate on this issue. Autism Speaks spends millions of dollars in advertising to gain recognition. On their commercials and videos, the Autism Speaks logo and name are shown so that people will know where it came from and gain more revenue through its fundraiser walks. The same thing is done every time a person chooses to wear an Autism Speaks shirt.
As the person goes about his or her everyday life, the name of Autism Speaks is displayed on his or her torso for everyone who looks upon him or her to see. As Rachel goes around at work in the shirt that her mother bought at an Autism Speaks walk that says "Walk Now for Autism," her co-workers will see her in the shirt. Their eyes scan the short and catchy phrase. Later, some other details are noticed, such as the presence of a Toys R' Us logo on the sleeve or the name Autism Speaks somewhere else on the shirt. On the back, there are the names of recognizable sponsors. If the people didn't support Autism Speaks before, they are more likely to after seeing that shirt and seeing the name of the organization on the body of their co-worker.
Really, the only difference between those shirts and the commercials shown on television comparing the odds of being autistic to the odds of being struck by lightning is that in the case of the commercials, Autism Speaks has to pay millions of dollars to get them out. In contrast, people are paying to obtain the T-shirts at the fundraisers to support their cause. In effect, they are paying to be walking advertisements.
Even if you get them for free, it is not good to wear them at all. Every time a person wears an Autism Speaks shirt, they are walking advertisements for them. They advertise their message of comparisons of autism to death, of hate, of disrespect, even of endorsing racists. Why quibble about wasting resources when there's the issue of promotion of hate involved? This isn't even about environmentalism in the first place. It's about affirming the right of autistics to exist on their own terms, and not on the terms of people who have little respect for us.
Wednesday, November 4, 2009
Outcries for Acceptance, Perverted
The article quoted Temple Grandin, who said that "P.D.D.-N.O.S., I’d throw in the garbage can, but I’d keep Asperger’s. " If you're only looking at that one article, you might assume that Grandin is saying that P.D.D.-N.O.S. should be removed from the DSM because it has less establishment. However, she has said other things that raise the question of whether she's also saying that the autistic people should be treated the way she would dictate their diagnoses of P.D.D.-N.O.S. and Asperger's syndrome.
For example, when asked what she thought of curing autism in an interview with Wrong Planet, she said that "in an ideal world, you don’t want to have people who can't talk, but on the other hand, you definitely don’t want to get rid of all of the autism genetics because if you did that, there’d be no scientists" (Edited slightly for grammar and spelling). She even goes so far to say in her book Thinking in Pictures that "There is concern among people with Asperger’s that genetic testing could eliminate them. This would be a terrible price to pay. Many gifted and talented people could be wiped out. A little bit of autism genetics may provide an advantage though too much creates a low-functioning, non-verbal individual" (Quote copied and pasted from this excellent post by Ballastexistenz).
So in other words, it would be a shame to eliminate all the "gifted and talented people" but the "low-functioning" are just a calamity to be wiped out. In other words, "It should be our aim to exterminate the undesirables."
There is also the case of autistic kids who have experience in mainstream environments. In that environment, all the special education kids may be grouped together on the "special ed bus" or one classroom and they may also be the targets of bullies who call them "retards" and other such insults. In addition to all this, it is considered acceptable to portray autistic people as objects of pity because they are disabled in television commercials and probably in some school assemblies.
An elementary-age schoolchild in this situation would probably feel great anguish over being insulted and looked at differently than most other kids. However, he most likely wouldn't be able to wrap his or her brain around the concept that he is being segregated and discriminated against by the environment he lives in. He also may have absorbed some bigotry from the environment that he lives in, growing up believing that it is acceptable to look at disabled people as less than people and separate them from "normal folks." However, this is incongruous with his feelings that he is treated in an unjust manner.
Ergo, he may blame his situation on the fact that he's lumped in with "those kids" and cast his lot with the favored "normal kids," maybe even going so far as to join in bullying his special education peers along with them. This doesn't happen all the time, but unfortunately, it does happen. I was that kid at one point in my life. My younger brother has said of his situation, "My classes suck. No offense, but they treat you like you're autistic. They only give you easy work to do and they treat you like you're stupid. I don't deserve that."
The urge to cry out for acceptance is there, but in some cases, especially if the disabled person is relatively closer to the norm than his or her disabled peers, it is perverted into a sense of elitism. In other words, all us high functioning people shouldn't be treated that way, but those retards don't deserve to be treated better. I shouldn't be treated like they are.
Another quote from the article was from Ari Ne'eman. He said that “My identity is attached to being on the autism spectrum, not some superior Asperger’s identity.” And that sums up what societal attitudes should be. We are all part of the autism spectrum, with disabilities in different areas in varying degrees. The division of disabled people into two groups, one seen as more valuable and fighting for justice and another seen as worthy only of "cure," is not the way to solve the problem. In fact, it is merely another version of the problem that fits this description perfectly: "[The High] are then overthrown by the Middle, who enlist the Low on their side by pretending to them that they are fighting for liberty and justice....[and] thrust the Low back into their old position of servitude" (Quoted from 1984 by George Orwell).
Until acceptance is recognized as something belonging to everyone and not just a privileged group on top, until exclusion is eliminated, we will make no progress.
Sunday, November 1, 2009
To Pass, or Not to Pass?
On one hand, an autistic who chooses to pass has to keep it hidden, all of his or her autistic behaviors and constantly be careful not to betray himself. If people start spouting out bigoted hate speeches that reduce the neurotype that he shares with about 50 million other people into a calamity that must be researched and "cured," why protest? If he dares to protest all the bigotry, he endangers his position as an accepted person in the society of people who don't know that he is autistic that he has worked hard to maintain. Maybe he is pro-cure himself and either doesn't want to lose his reputation and/or wants to distance himself from "those people."
If a person chooses to be "out," she feels less the need to hide due to having already made the decision not to. However, making the choice to be "out" has also gambled her social reputation, friendships, relationships, and job prospects due to employers' widespread bigotry. Even if all of those are still safe after coming out, there are more dangers to encounter. People may say things like, "You're not really autistic" and "I would never have guessed!" She may become a social pariah who faces the consequences of being pitied everywhere, not taken seriously, and socially excluded. Maybe there are people who throw throw bombs of all kinds at her, from actual projectiles of paper and food to epithets such as "retard" and "weirdo." And whether this person supports or is against neurodiversity, supporters in the neuromajority mostly only accept him or her as the "token autistic" who is on their side.
No one should have to make this choice. No one should have to face the societal bigotry that leads to the necessity of this choice. But unfortunately, autistic people do face this kind of bigotry. If an autistic person is judged to be "low functioning" and unable to meet society's standards, he or she is warehoused into an institution and/or written off. Then they are decided as being good for nothing but the purposes of "advocates" who either say things like "Oh, he's got autism really bad and I wish he could be cured," as if only their judgements matter or put words into their mouths such as "She has low functioning autism and she is obviously unhappy with it. Let's cure her autism!" If a person is able to meet society's narrow standards, then he or she is faced with the choice to pass or not to pass. Either way involves the facing of bigotry, whether it's in silence or coming right out with opposing opinions.
In today's society, autistics are judged by how close to the norm they are, or how well they meet society's standards.
On top: "The Hidden Horde"
They are the autistics who remain in the closet and are accepted as normal members of society, but who have to work hard to maintain this position by suppressing their autistic behaviors and even then may be excluded by people who suspect that they're autistic. They don't even have to be pro-neurodiversity. All that is required to be part of this group is staying hidden by any means necessary.
"The Token Autistics"
They are just a step below the hidden horde who choose to pass. They have made it public that they are autistic and also that they support "finding a cure" for autism. They don't even have to be "high functioning." They just have to be autistic and in support of a cure and they have society's support. They also live without fear of anyone saying that they're not really autistic. Why? Because the curebies need token autistics on their side.
"The NDs"
This caste is made up of neurodiversity supporters. They are talked of as "wanting to deny a cure to those poor people who are more afflicted than they are" on the Internet. Neurodiversity proponents are often the victim of the strawman that they "have little to no symptoms and so their only problem is acceptance." Never mind the fact that some have been institutionalized, been denied jobs, faced segregation in the school system, and were forced to undergo "modification programs." A person promoting neurodiversity right in the middle of peers who have mostly never heard of autism apart from the medical model and dehumanizing language of curebie organizations seeking to eliminate our neurotype is often not taken seriously. He or she may be told that "there are people who really suffer from their autism" or that they're saying that "we shouldn't be trying to cure diseases like cancer!" Very rarely do they find anyone who listens to them. Even then, their listeners may turn out to be pseudo-allies who try to lead discussions of autism and neurodiversity and often miss the point. Oftentimes, both on and off the Internet, they may be told that they're "not really autistic."
"The Silenced"
These autistics can't meet society's standards and so society just treats them whatever the heck it likes and gives them no say. They are sometimes warehoused in institutions and group homes so that all the normal folks don't have to bother with them. They are often used as propaganda tools by organizations like Autism Speaks in their "Meet [Insert Kid's Name Here]" where they show autistic chidren and talk about what they need and what they're learning in a pitying way. For example, they'll show a young autistic girl learning how to tie her shoes and say that it's a miracle that she learned how. Or else people who know them will say, "Oh, Bob has autism really bad. I wish he could be cured." They are silenced and not allowed any say whatsoever in their lives. The closest thing that comes to actually giving a damn what they think is when "advocates" put words in their mouths and say, "Oh, they really want a cure. Why wouldn't they?"
Of course, it has not been unusual to judge member of a minority group based on how close they were to being a member of the majority and to put pressure on them to emulate members of the majority group. In the Middle Ages and the Renaissance, Jews were deprived of some of their basic rights unless they converted to Christianity. Entrepreneurs made money by selling products to bleach the skin and black people readily bought these. In the 1960s, it was considered medical procedure to try to convert homosexual people into heterosexuals and anyone who remained in the closet was judged by how well he was able to pass for heterosexual.
Albert Einstein defined insanity as "doing the same thing over and over again and expecting different results." There are no better words to describe this pattern. The system of favoring one group over another has led to discrimination and denial of rights to the less favored group again and again. It is not until we scrap the idea that everyone has to fit one ideal that only a privileged few can meet in favor of accepting and giving everyone equal rights that we can move forward. And yes, I said everyone.
Saturday, October 10, 2009
Ability and Disability III: Double Standards
Alicia found plenty of ways to cut herself; some were obvious, like razor
blades, safety pins and scissors. Other methods took some creativity, like using
broken CDs and even ordinary buttons. All were acts of a desperate and hurting
girl.
She was healed by working with a combination of medication and talk therapy. The cause of her pain was made obvious: her surroundings and she was helped to get through it.
Nate Tseglin was tested for Asperger's syndrome and was met with discrimination in school. Even though he had been successful in honors and AP classes in his previous years of school and took a college course over the summer of 2006, he was prevented from going into higher levels of high school classes and put into special ed classes and was treated as being incapable despite all the evidence otherwise. As a result, Nate Tseglin started injuring himself. He was picking and scratching at his arms. Both his teachers and parents noticed and psychiatric help was sought, but things turned ugly.
Nate Tseglin was forcibly medicated despite protests from his parents that he was physically unable to take them. After that, he was placed in a group home where he was abused by staff there. Nate Tseglin ran away back to his parents and was then placed in a mental hospital, where he was kept in an isolation room and fed only small amounts of food. The ordeal went on for more than a year until Nate Tseglin was finally freed in May of 2008.
In both situations, there was a teenager who was obviously frustrated with his or her surroundings and responded with self-injury. One was helped to get through the causes of her pain and was helped to gain control over it. The other one was given no oppurtunity for control and had his human rights denied. The only difference between the two teenagers other than gender and location was that Alicia Moore was in the privileged, "normal" circle and Nate Tseglin had the scarlet letter "A" of autism on him.
For people who have no diagnostic labels and have self-injurious behaviors, the culture and their surroundings are blamed. In talk therapy, work is done to address the causes, get through them, and develop healthier coping mechanisms. There are several websites on the topic of getting through self-injury using these steps and there are several pieces of literature on this topic.
When a person is autistic or has any other stigmatizing psychiatric label, however, things change. The self-injury is seen as a co-morbidity or "symptom" and they are given no oppurtunities for self-control. It is justified to do all sorts of things to the self-injuring person. Disabled people who injure themselves are often institutionalized, put in restraints, forcibly medicated, isolated, and shocked, and it's all right because after all, they're not "normal," are they?
And accounts of their self-injurious behaviors, even if it is mentioned that surroundings have something to do with them, are not treated as they would be if shown in someone who was otherwise "normal." They are sensationalized, set up as a symptom of "their tragic disorder," and the autistic people injuring themselves are turned into objects of pity. Inevitably, the listeners to these stories shake their heads in pity and donate a few more dollars towards "curing anything along the autism spectrum."
Why the double standard? It's all part of the attitude that the "normal" neuromajority is better than the "disordered" neurominority. When a person belonging to the neuromajority and has no label self-injures, the behavior is looked into. The intention is to find out why the person is injuring him- or herself and to fix it. Work is done to identify the triggers and healthier coping mechanisms are developed. If an autistic person is self-injuring, however, people around him or her see it as being caused by his or her autism, even though there are autistics who don't self-injure and there are non-autistics who do self-injure. Even if an outside cause is identified, the self-injury is still sensationalized and the greedy curebie organizations seize upon it like a piece of meat and display it as a reason to "cure autism now!"
If only that double standard could be eliminated. (And yes, ABFH, I know you did a post on this topic. :) )
Tuesday, October 6, 2009
Autism Speaks' Song!
What's the club that's great
For spreading hate with great finesse?
A-U-T-I-S-M-S-P-E-A-K-S!
Hey! there, Hi! there, Ho! there
We'll listen to your distress
A-U-T-I-S-M-S-P-E-A-K-S!
Autism Speaks!
Autism Speaks!
Forever let us hold our pieces
High! High! High! High!
Come, you're great for spreading hate
To whining, we say yes!
A-U-T-I-S-M-S-P-E-A-K-S!
Join our hate club
We'll have fun
We love new faces
High! High! High! High!
We'll spread hate and
We'll go places
All around the world
We'll go walking
What's the club that's great
For spreading hate with great finesse?
A-U-T-I-S-M-S-P-E-A-K-S!
Hey! there, Hi! there, Ho! there
We'll listen to your distress
A-U-T-I-S-M-S-P-E-A-K-S!
Autism Speaks!
Autism Speaks!
Forever let us hold our pieces
High! High! High! High!
Come, you're great for spreading hate
To whining, we say yes!
A-U-T-I-S-M-S-P-E-A-K-S!
Saturday, October 3, 2009
Ability and Disability II: Diversity of Communication
In case you're wondering, this isn't a description of how autistic people are treated nowadays. This is a description of how deaf people were treated in the 19th century. Doctors assumed that deafness was a tragic disability that left deaf children mentally impaired and hearing parents were told to teach their children how to speak and read other people's lips as clearly as possible so that their children would look normal and so that society barely had to accomodate them as they grew up. Sign language was only used as an absolute last resort.
But the similarity is rather scary, isn't it? Nowadays, the measure of an autistic person's success is considered to be how well he or she can fake being non-autistic. For this reason, parents of autistic children turn to intensive speech training first and persist at it until their autistic child learns how to speak properly. If an autistic person has a need to use a keyboard, communication board, writing, or sign language rather than speech, that need usually goes unrecognized until someone wises up and realizes that one of those approaches might be better.
Even if an autistic person can communicate using one of those alternative approaches, if they can't speak "like a normal person," they are usually pitied and set up as a reason to donate money to find a cure for autism. My school district is big on "autism awareness" campaigns and the main piece of scare-mongering that is encouraged is this: "Most children with autism will never learn how to speak." It is never mentioned that many autistic people are able to get by with other means of communication. Both of my sisters use sign language. I can speak, but I have a speech impediment and feel that I can articulate myself better through writing and typing.
I don't mean any disrespect for parents who are trying to teach their autistic children speech. Speech is the most widely recognized form of communication and it's natural to turn to it first. I'm saying that it shouldn't be taught in exclusion of other forms of communication. If an autistic person can learn to speak and it works for him or her, that's good for that person. But that doesn't mean that they have any "higher level of functioning." It just means that speech has worked out well for that person.
In a gem from the autistics.org Information Library, Conversation on Institutions, the interviewee describes an incident in an institution where she worked. A man who was in the institution where she worked was deaf and couldn't learn speech or sign language and was therefore considered to be "'way too retarded to understand how to communicate.'" However, he could communicate by writing things down. But because it wasn't recognized as communication, he was written off (no pun intended) as being mentally defective. This happened to deaf people in the 19th century and it often happens to autistic people now. This shouldn't happen to anyone.
In a scene of season two episode "The Trial" of My Name is Earl, the interpreter for a deaf lawyer named Ruby Whitlow gets his tongue cut and a new interpreter is needed because Ruby Whitlow communicates via sign language. The only interpreter that can be found speaks Mandarin Chinese, so an interpreter is needed for her so that the English-speaking audience can understand her. This is played up for comic effect, but the scenario that plays out shows how valid sign language for deaf people is considered today. Sign language is considered just as valid as Mandarin Chinese in the trial scene and interpreters are provided for the speakers of those languages for easy communication.
Ideally, alternative methods of communication would be considered just as valid for autistic people.
Ability and Disablity I: Socio-Medical Constructs
Sadderbutwisergirl,
"Autism is not a Berlin Wall to be broken down. It is a socio-medical construct that describes the way a minority group of people think and feel."
Okay, not to be one of "those" parents, but...I agree that autism isn't a wall and I definitely dislike her choice of words and the sentiment behind them, but...
How is autism a "socio-medical construct that describes the way a minority group of people think and feel?" More particularly, how is the inability to communicate consistently and effectively at the age of ten without any discernible muscular impairment or deformity a "socio-medical construct that describes the way a minority group of people think and feel?" How is getting so frustrated with your surroundings that you bite yourself so as to form a thick callus on your wrist a "socio-medical construct that describes the way a minority group of people think and feel?"
To clarify, I do realize you're cognizant of these possible aspects of autism and I also recognize that you're not denying them. I'm not trying to be snotty, I'm not a troll, nor are my questions rhetorical. I'm interested in your logic/explanation.
I've seen trolls make blasts in reference to that choice of words and would like an explanation as to what you mean by them.
First of all, yes, I am not denying that autistic people can be disabled in those ways. What I mean by saying that it's a socio-medical construct is that autistic people are disabled in comparison to their society, which was made for a neuromajority that they are not part of. I once read the story Cultural Evaluation, in which the Nientese, a race that lives in a society that sounds perfectly suited for those who would be given the label of autism in our society from how the society is described. Children don't normally learn how to speak until the age of six and do best learning in a solitary situation on computers, often able to use computers as toddlers. For children who are considered precocious in the area of speech, but can't learn the way a "normal" Nientese can from a computer until the age of six, however, they would be considered "normal" in today's society. A parent with a child like that in today's society would be happy that their child is speaking and wouldn't really care about their inability to tolerate being alone and use computers. In Nientese society, however, they are diagnosed with Oversocialization Spectrum Disorder (OSD), considered an embarrassment and often medicated because of their chattiness, and in general are considered to be mentally impaired. This is because the people with OSD are considered to be abnormal in comparison to the neuromajority of Nientese who focus on intellectuality, despite their great abilities to speak and interact socially with other people like themselves.
Another example is autobiographical. When I was a baby, my mother, who stayed at home with me while my father worked, was in great distress because I wasn't looking at her and wasn't speaking as much as her aunts' children, who were around my age were. In addition, I would often throw tantrums over things she couldn't understand, like someone singing a song or a visitor coming over. My relatives on my father's side, however, were marveling over my lining up my toys and my studiously looking at objects such as leaves when they saw me at visits. My grandmother on my father's side tells stories of how I was reading at the age of one.
I am not saying that either my mother or my paternal relatives were inherently good or bad. I am not pitting them against each other. My mother came from a family where autism and autistic traits weren't so prevalent. All of her siblings (all younger than she was) grew up "normally," speaking as toddlers and being socially well-adjusted in school and almost all of her cousins grew up in a similar way. Growing up in this situation, she accepted the way her younger siblings and cousins grew as "normal." In fact, the only member of the family on her side that has been given an autism diagnosis is one of my first cousins, once removed.
In contrast, a lot of relatives on my father's side have more autistic traits than the average population. They don't really consider it abnormal for young children to start speaking after other children do, nor do they consider it to be abnormal for for babies and todddlers to show an interest in reading or lining up their toys, nor do they consider it unusual for them to focus intensely on one subject matter or have socially atypical behaviors when they're older. This is because that's the way it normally is in their family history. They're also quite wealthy, so they were able to afford nannies and private schools for their children to accomodate their childrens' needs and also to accomodate their own needs. They have also adapted to having children with autistic traits in different ways. They normally have children later in life, when they have gained a great amount of financial resources, enabling them to cope with disabling aspects of autism and autistic traits in both themselves and their children by hiring nannies and giving them more options as to schools that are suited to their childrens' needs. They also developed a practice of having smaller families, enabling them to focus more attention on one child.
My family members reacted in different ways to me and my autistic traits based on their experiences. My mother was reacting to the ways in which the experience of raising me differed from her experiences of caring for her younger relatives who were closer to the norm. Naturally, she panicked and doctors telling her that I had a "developmental/behavioral disorder" did not help much. My relatives on my father's side saw me as developing pretty well in comparison to their experience of younger relatives and children. The divergence in reaction was caused by what my mother and my paternal relatives were used to.
In today's society, the skills that are considered essential are speech, ability to obey a teacher, and social skills. Intellectual pursuits such as reading, writing, and mathematics are considered to be merely "extra skills." They are considered to be important, but social skills and speech come first. In Roald Dahl's novel Matilda, the protagonist, a young girl named Matilda, is a child prodigy who is intellectually ahead of her kindergarten peers, but isn't allowed to be in an older form by her Headmistress, the Trunchbull, because of her strict belief that the children should be sorted by age.
However, she could not be considered autistic by any means. She is described as knowing as much speech as a grown-up at the age of one year old and gets along quite well with people socially. The only difference between Matilda and the average five-year-old is that Matilda just happens to be ahead intellectually. In contrast, an autistic child may get along quite well in the world of academia at a higher level than his or her peers in one or more areas, but the autistic child will still be considered defective due to his or her developmental, social, and speech delays, as well as needing accomodations in an academic environment in some cases.
This is not an aspie supremacist rant about the placing of social and speech skills above intellectuality in the skill hierarchy. I do feel that social and speech skills are given an unfair amount of emphasis, but I also believe that judging superiority based on intellect is just as restrictive as judging superiority based on social and speech development. In fact, prizing one set of skills above another just leaves those who lack or only have rudimentary skills in the favored area and greater skills in a less favored area winnowed out and oppressed.
Non-autistic children usually have a great need for socialization and talking. Today's educational system is well suited to the needs of the non-autistic neuromajority. Teachers talk about the subject that they are talking about and invite students to share their thoughts vocally in class. It is also common for teachers to split up students into study groups to talk to each other about the subject matter. Textbooks are only turned to occasionally and writing is only done for homework. This suits a non-autistic's needs very well and integrates them into the learning process.
However, for an autistic person who only has rudimentary skills in social and speech skills and is great with reading and writing, that might not work out so well. The class style may not be suited to his or her needs due to its emphasis on socialization and talking, thus making it harder for the facts-oriented autistic student to learn. And due to a combination of homework being made out to be a waste of time and a thing to be avoided when possible among young children and a high stress level after a day of school that does not meed the student's needs, the student usually doesn't learn well from the homework, especially because it is supposed to be a refresher for what was learned that day rather than a replacement for what couldn't be learned that day.
Autistic people are disabled due to a combination of us living in an environment that was made for a neuromajority to which we don't belong and to the administrators in charge being unwilling to accomodate our needs according to individual assessment of learning styles. In today's society, it is assumed that if you can't thrive in the environment that is supposed to be good enough for everybody, then you need things to be "easier" and so students with learning/developmental disabilities are relegated to segregated "special ed" classes in school, where the only divergences from regular classes are that the work is less challenging, the class is smaller, and they are given lower expectations. They are assumed to have less ability than "normal" students and that becomes often becomes true after years of being barred from being educated according to his or her needs, having less expected of him or her, and having lower self-esteem from years of being in a minority group in a society where it is considered politically correct to refer to them as "train wrecks" and other such epithets.
The only way things will be different will be if society decides to throw out the attitude that only one type of neurology and set of skills should be favored over another. Instead, people would have easy access to the accomodations that they need without being given labels and being stigmatized, nor would they need a mass of financial resources to have this easy access. However, there is more on this coming up soon, so don't unbuckle your seat belts just yet.