Anyway, on the issue of internalized ableism, I am reminded of the case of Rie Sasamori (nee Henmi), a Japanese woman with ADHD and Asperger syndrome who went undiagnosed for 32 years. She was early in writing hiragana and Chinese characters, but spoke unclearly, pronouncing for example kuruma (car) as kununa or nezumi (mouse/rat) as nenuni, which pronunciation tendency became known as Rei-chan-go (Rie-chan language), but she eventually got over that. In youchien (essentially Japanese kindergarten), she isolated herself from the other students in the room; on a class outing to pick out vegetables, she refused to step onto the mud, having problems with ground that was not stable. While shopping with her mother, she would suddenly disappear, to be found playing something of interest.
In elementary school, she did really well in the classes that she was good at and interested in, like Chinese characters class. She was very enthusiastic in class and when the teacher called on the class, she raised her hand, and said the word hai over and over against repeatedly for at least 10 times, causing the rest of the class to look upon her in wonder. She artfully discriminated homophones. In classes she wasn't interested in, however, particularly classes where she had to just listen, she would not pay attention, and would either look out the window or, when she was sitting by the hall to move her away from the window, the notes of another class (because she had difficulty discriminating between different sounds). She would suddenly talk to a classmate about a favorite interest, like stegosauruses, but her teacher would scold her for it; she would do other things like leaning back and forth on her desk until she fell over.
She was poor at math (and possibly had dyscalculia), and during math class she would read the material of another class, like geography. When her teacher got on her about that, she, in little professor style, would explain how the lakes of Japan have changed in size over the years, leaving her teacher dumbfounded. She did not know how to clean her room, and often did not realize it was even a mess; she also had the autoimmune disease alopecia areata, which caused bald spots in her hair. She was very forgetful, and her mother would often have to bring her stuff in, but her mother and father changed their tone and became much more strict. She had difficulty keeping up with her stuff, so she tried doing things like stuffing her randoseru (Japanese elementary school students' leather backpack) and then just cramming everything in her desk, which she would subsequently forget. One morning, her teacher had inspected her students' desks and emptied out the contents of the messy desks and put them on the top of the desks; she then called out the students who had messy desks. Rie was the only girl who had a messy desk, which included even moldy bread, highly stigmatizing for a girl in Japan.
Like other children with ADHD, she was bursting with energy and in class often had the urge to simply get up and move about. Unlike other children with ADHD, though, she would immediately comply with direct orders given her. Whenever she got up, her teacher would tell her in no uncertain terms to sit immediately back down, which she did--she still burst with energy, however. The reason was she had yet another developmental disorder, which became apparent in a party in which the kids would each bring a present and start passing it around in a circle, until the teacher said stop, which meant that the present you had in your hands when stop was called was yours. (This game is very popular among Japanese children.) She received a girlish drawing book, which had been made by another girl in the class whose name was in the book, but she did not want it. Now, the teacher gave the students the opportunity to say they did not want the present, but the unspoken assumption behind that statement was for boys who received a girl's toy or girls who received a boy's toy to trade for the sex role-appropriate toy. Rie, oblivious to that unspoken assumption, simply raised her hand saying she didn't want it, shocking the class. The girl who created the book then cried, and another girl called Rie out for being mean, but Rie could not figure out what the problem was. This was her Asperger syndrome manifested.
With her Asperger syndrome, she had various sensory sensitivities as well as motor deficits. She would eat one food at a time (never thought this was abnormal until recently), which her dad chewed her out for. She would sneak a particular type of food whose taste she would seek. She could not stand to come into contact with water, or to hear it running. Her mother in the morning would ask if she washed her face, Rie would lie saying she did, but then her mother would catch her in the lie with evidence of food around her mouth, forcing her to wash her face. She had trouble with buttons and would often mismatch them when buttoning up her shirt. She had difficulty discriminating left and right and which shoe to put on. She had trouble fitting her name in the space for her name on tests, and she had difficulty using rulers and compasses and any task that would require her hands to be doing different things simultaneously (like cutting a piece of paper), which was very frustrating for her. Here, she acquired the nickname Hen-chan (literally, "strange-chan"), a play on her last name Henmi and the fact that her peers thought she was very strange.
In middle school, many of her problems continued. She could not clean her room, and would get distracted if she tried. When Rie's grandmother said a relative was staying with her, Rie wanted to meet with that relative, so out of the blue without telling anyone she took the 2+ hour train ride from her hometown of Kobe to Takamatsu where her grandmother lived. Her motor and organizational deficits continued, as her school painting supplies were such a mess, highly stigmatizing for a Japanese girl. She would read very advanced books on her favorite subjects, and other girls, still calling her Hen-chan, would ask her what she was reading and why she was reading it. Rie went into little professor mode, discussing the pancreas, specifically the Langerhans cells which produced insulin to control blood sugar, explaining that she found the way the human body was put together fascinating. Her special interests included human anatomy, fossils, dinosaurs, and history, all very unusual for a girl in middle school. In high school, she was at the top of her class in English and moved on to college where she graduated also. She chose a college close to home, however, to minimize the time she had to spend in the noisy train station.
She tried getting a job in her topic, but it was a struggle for her. She met with a potential employer in a cafe, but she kept being distracted by everything else going on in the cafe. She could not enter the workforce. She did like the sound of motorcycles, however, and that's how she met her husband-to-be. One time, at a motorcycle shop, the employee told them to wait while he checked if an item was in stock; her boyfriend would move around looking at different items, but she would stay rooted to the spot, telling her boyfriend that he shouldn't move from the spot while they were waiting. Either way, they would get married and move to Tokyo in an apartment together. He would work and she would assume the role of housewife, but her inability to clean became a problem. As she unpacked the boxes, she created a huge mess, which was stressful for her husband. Her husband would eventually direct her cleaning. Even with the issues, they still enjoyed time together.
One night, her husband told her to check on the bathtub he was filling up and come back and say how it was. She came back and said it was full. He then asked if she had stopped it, to which she answered in the negative. He had never told her to stop it if it was full. The couple would go on to have 3 sons, and problems would start when the eldest son Kuon started to exhibit signs of the issues Rie had dealt with. By age 3, Kuon could not say his own name and was delayed in talking, but Rie's husband assured her that he was slow speaking, too, and that Kuon would end up catching up. Later, in youchien Kuon, just like hsi mother Rie at his age, would stay apart from the group, lost in his own world. He had trouble with motor skills, and could not do origami. Rie was very troubled by this development and would talk to her mother and some of the other women about it. Her mother said she had been slow in speech, too, and that she needed to be especially strict with Kuon. The other women Rie spoke with agreed, saying if the husband was going to be a softy, she needed to properly scold her child for his failings.
She took those statements to heart, becoming a tyrannical mother, to the point where Kuon was afraid of her. Kuon continued to struggle with motor skills, and her mother was right there, yelling at him over and over again until he would get the motor skills right. Rie's husband warned her about this, saying she need to believe in their children, but the statement simply confused Rie. Rie then tried working at a retirement home, but she was quickly overwhelmed. She often could remember only the first instruction given, when told she needed to move to the next instruction she immediately stopped what she was doing (which involved the risk of an old man falling off his ball), and she struggled to act according to the situation (rinki-ouhen). Rie's supervisor chewed her out, saying as none of her tasks were completed despite not being difficult, she could not pay Rie. Rie then became depressed and went to a neurologist for help, but was diagnosed only with depression.
While out and about, she came across a book titled Women who cannot clean, which she expected to make fun of women like her, but instead she found that it captured her experiences perfectly. She brought all her old records to a doctor who diagnosed her with ADHD and Asperger syndrome. The doctor wondered how, with these developmental disorders being so bad, she could have been missed for 32 years. She then brought Kuon in to be tested, and he was diagnosed with high-functioning autism. The doctor assured Rie, saying she should not blame herself and her son for these issues.
There was a major change in Rie's attitude and she worked closely with her son Kuon to help him succeed, probably understanding him better than anyone else. She began to seek support and accommodation, rather than the super-strict disciplinarian model which resulted in little other than misery for her and her son. 8 years after diagnosis, both she and her son were doing quite well.
This is the kinda ableism which I think is poisonous, that you need to be extra super duper hard on yourself, you need to tear into yourself, you need to think of yourself as crud until you can act just like a neurotypical person could: the further from a neurotypical person you are the more abominable you are, goes the belief. Part of overcoming internalized ableism is to finally explore not only your impairments, but how these impairments could be better accommodated so you can succeed and to advocate for them and to make sure to discuss and debate these issues.
EDIT: BTW, the source for this was a documentary on Nihon Television.
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"You have a responsibility to consider all sides of a problem and a responsibility to make a judgment and a responsibility to care for all involved." --Ian Danskin
15 Feb 2014, 1:16 am
