Disability in Fiction: An Analysis of Disabled Characters, Tropes, and the Impact They Have

So, I took a Disability and Society class in college and recently was going over some of my old papers. This is a modified version of my final paper (yes, I got an A!), and I felt like it was appropriate on this blog. The prompt was to analyze something related to our field of study through the lens of topics we’d covered in class, how it effects society, and how we intend to apply things we’ve learned to our fields when we graduate. So, as an English/Creative Writing major, I chose to write a paper about disability in fiction (mental and physical), the impact it has, and how it will influence my writing. Hope it’s still interesting!

Disability in Fiction: An Analysis of Disabled Characters, Tropes, and the Impact They Have

Fiction in novels is a mirror of our real-life world, reflected back at us for multiple reasons. Many times, it provides escapism via ‘perfect’ characters, or at least, characters with very few flaws. Main characters are almost always attractive, young, and often athletic enough to face down an ogre. In modern times, visibility has become a more prominent component of many genres of fiction. This means portraying all sorts of characters as main characters to provide people, ranging from children to adults, role-models who are like them: female, dark-skinned, of certain religions, LGBT, etc. The minority group that usually gets the least amount of visibility is the disabled. Even when there is some visibility, the manner in which it is written is often lacking. But why does the quality and style of a character matter in regards to visibility, and what role does it play in our society?

Being well-written is without a doubt the biggest key to the success of visibility. If a disabled person only ever sees themselves portrayed in novels as helpless, victimized, inspiration for a more important character, or (in a shocking number of cases) evil, they might have a harder time picturing themselves as being capable of success or strength of any kind. Similarly, if disability is treated a certain way in fiction and that is what society sees, then it can affect the way parents, caretakers, and people in general interact with disabled people. That is why it is vital to have fully developed, well, and accurately written disabled characters in fiction: to increase the chances of success, raise the quality of treatment, and elevate the self-esteem of the disabled community.

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Image is of different stick figures showing different forms of disability

Visibility, or rather, a lack-there-of has impacted me in a personal way that is relevant to this topic. For a long time, I copied in my own writing what I thought was simply the style that was required for writing fantasy to the best of my ability, and came out with a decently written novel. The remarks I received were that my world-building was interesting and my characters were generally well done… except for the main protagonist. There was something off about her, but no one could put their finger on what that something was.

After a psychologist realized I was likely on the autism spectrum, I finally decided to try writing a completely unrelated short story from my own perspective. The result was the difference between night and day. My writing was suddenly engaging, my character interesting, and I was told that no one in my class had ever read something with a voice like my character’s before.

The reason I had not written like that earlier was simply because I didn’t know I was allowed to. I had not realized that the way most books are written in actually represents most people’s thought processes, I had assumed it was a stylistic choice to cut down to the bare bones for the sake of story-telling. In a way, I did not know I existed. There is very little visibility for neurologically atypical/diverse main characters in novels. They are side characters – if they are there at all – who are there to teach the main character patience, understanding, responsibility, or some other desirable trait. For more on this subject, see my blog post about the “Manic Pixie Autistic Sidekick” here: https://somegirlwithabraid.wordpress.com/2017/09/02/the-manic-pixie-autistic-sidekick/.

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Image is of three women characters stereotyped as ‘Manic-Pixie Dream Girls’, with the cover of the movie Rain Man among them and is titled “The Manic-Pixie Autistic Sidekick”

The modern movie Rain Man starring Tom Cruise and Dustin Hoffman is a popular example. Raymond, the autistic brother, doesn’t exist for the sake of his own story; he exists so that Tom Cruise has an opportunity for character growth. In more troubling examples, sometimes mentally disabled characters are evil or misguided villains stereotyped as mad-scientists. This is the case commonly in comic books, but also in Gothic horror such as Dr. Jekyll and Mr. Hyde’s chemically created schizophrenia. Proper visibility would involve a main character accurately portrayed with their mental disability, not sensationalized, villainized, or marginalized. If I had seen accurate visibility of neurodiversity in fiction, I would have been able to see myself in a different way, understand myself better, and perhaps have found success sooner.

For this paper, I will focus on both the mentally and physically disabled characters in a select number of novels and address the strengths and the problems with each portrayal. These novels are The King’s Damosel by Vera Chapman, Eon: Dragoneye Reborn by Alison Goodman, and The Curious Incident of the Dog in the Nighttime by Mark Haddon – with some additional comments from the movie Quest for Camelot which is related to Chapman’s work as well as The Lost Years of Merlin by T. A. Barron. Afterwards, I will reflect on these novels from the perspective of my own work in progress manuscript, Castle of the Unwanted. In The King’s Damosel one of the main characters is a blind hermit man, in Eon the lead character is a girl with a disfigured leg, and in Curious Incident the main character is a boy allegedly with Aspergers. I will research each of these disabilities from the perspective of online activists, blogs, and interviews with and by people who live with these conditions and compare the real-life equivalent to their fantastical counterpart. Each case is unique, with some strengths, and with some serious flaws that need to be addressed if accurate visibility is to have a future in fiction.

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Image is of the cover of Vera Chapman’s “The King’s Damosel”

In The King’s Damosel by Vera Chapman, the disabled character is the second love interest of the main protagonist, a girl named Lynette. He is a blind man living in a cave named Lucius. Even his name is meant as almost a joke, or perhaps irony:

“‘I am called Lucius,’ he said.

‘Lucius? That means – of the light?’

‘Yes, although I have long lived here in the dark. My mother named me Lucius when we first came into the dark. She named me for the light she hoped we would both see…’” (Chapman 115)

Part of the reason that Lynette falls for him is that she’s glad he can’t see her, as she feels she is too plain and that those who can see her don’t like her.

“To have him see her! No, it would be unbearable. To see the disappointment in his look, to have him turn away from her when he knew the truth – oh no.” (Chapman 141)

This is an interesting comment for her to make, implying that part of what she likes about Lucius is the fact that he is disabled, because it means she can hide herself, yet she can also be more herself than with others around him. Their entire romance separates this particular novel from the other novels to be discussed, as romance is something not commonly found in connection with disabled characters, who are often portrayed as asexual beings. However, an exception seems to be made for the blind, and the idea of falling in love with someone regardless of their physical beauty is a trope that has become romanticized. This is not necessarily a bad thing in its influence on society, but it is a repetitive trope nonetheless.

The main thing to focus on with Lucius’s character is what happens at the very end of the novel. Lucius is sick and dying, and the only way to cure him is through the magic of the Holy Grail, which would essentially grant him a healing wish. Lynette goes on a quest to get him the grail and succeeds, bringing the life-saving grail back to him in order to heal him, so that they can live a long life together. Instead, Lucius gives up his life by wishing instead for his vision so that he can see her before he dies. And, inevitably, he does die as a result, after proclaiming over and over how beautiful she is now that he can see her.

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Image is of a representation of the legendary Holy Grail

This plays into the trope that one is better dead than disabled as Lucius literally chooses to be able-bodied over having a long healthy life with the woman he loves. The book portrays this as if it is supposed to be a romantic gesture of some sort, that he has given up life so that he can see his beloved’s face, but the impression given is that his life as a blind man is not worth anything, so he might as well give it up so that he can be able-bodied for a short while, even if he had someone who loved him and wished to live a long happy life with him:

“But if only he would choose life – just as he was, without sight! How gladly she would devote the years of her life, as many as might remain, to caring for him, nursing him, being his eyes. Perhaps – oh, perhaps there might be children.” (Chapman 168)

The situation also plays on the trope of magically healing a disabled protagonist in fantasy. An interesting note is about a mediocre children’s cartoon musical movie based very, very loosely on Chapman’s novel called Quest for Camelot. While almost all of the story is changed (the book handles very adult themes such as rape and torture which simply are not fit for a children’s cartoon), Lucius’s on-screen counterpart Garrett is also a blind hermit, living in a forest instead of a cave. At the end of the movie, there is a magical deus ex machina moment that heals and fixes everything that is wrong with all the characters in Camelot. This includes everything from healing a broken arm to reversing mutation inducing curses from a witch’s evil potion to killing the main villain of the story.

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Image is of the movie cover for Quest  for Camelot

Interestingly enough, even though this magical occurrence is shown to be capable of healing acquired injuries like a broken arm (Garrett was blinded in an accident, not born blind), Garrett is still blind after it occurs, and is show riding off into the sunset with Lynette’s on-screen counterpart named Kayley after they are both knighted. It is almost the exact opposite of The King’s Damosel’s ending, and frankly the better written ending – quite a surprise considering some of the other silliness in the movie. Quest for Camelot provides a role model for blindness, and one who is not rewarded by having his disability removed. Instead, it is simply a part of him, and he is perfectly capable of having a fulfilling, happy life with his acquired disability to the point that the magic decides not to heal him (said magic is shown in another instance to be sentient and aware of living creature’s preferences when it first separates then un-separates conjoined dragon twins). This is an interesting choice on the part of the movie’s writers because they easily could have returned Garrett’s eyes as an end-of-arch reward for his bravery through the movie, yet purposefully chose not to. Perhaps they, unlike Vera Chapman, were more aware of the need for representation in a positive light.

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Image is of the character Garrett from Quest for Camelot

There are many other tropes specific to blindness found in fantasy – the most popular being blind prophets or seers, playing into the idea that having one of the five senses dulled or lost completely leads to hyperawareness in other areas. In fantasy, that can lead to superpowers, almost always associated with being able to see something other characters cannot. This is the case in another fantasy book series called The Lost Years of Merlin by T. A. Barron. This book blinds the main character, the young version of Merlin named Emrys, early on in the first of the six book long series and yet soon afterwards he discovers a magical second sight that all but eliminates his blindness: another case of ‘if you are good, you are not disabled’. It also essentially negates his disability, in a similar way as the comic book character Daredevil: Emrys is a disabled man whose superpower/magical ability is that he is not disabled, making the inclusion of the disability essentially pointless.

While these specific books are slightly more obscure and therefore difficult to find commentary on, the blind community has had several things to say about blind characters in general, especially in regards to more popular characters such as Matthew Murdock in Daredevil and Geordi La Forge in Star Trek: The Next Generation – both TV show characters whose blindness is compensated for either by superpowers or technology. The concern about blind characters seems to be not that they aren’t interesting heroes, but that they aren’t ordinary enough.

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Image is a promotional picture of the show Daredevil, the character played by actor Charlie Cox

“My concern is that characters are portrayed in such a way that the only way they can be competent is if they are somehow exceptional, have some kind of superpower or had some kind of technology that enabled them to see.” – Dr. Betsy Zaborowski. “… What I would really like to see is a blind character in the movies and television just leading a normal life, where his blindness is not the whole center of attention. Holding a job, and having fun, living a full life.” (abcnews.go.com)

Another concern voiced by the same doctor refers to the way blind individuals are seen as having heightened senses: “One of the greatest misconceptions out there is that blind people’s other senses are somehow enhanced. That is not true. We tend to use our other sense more but there is no evidence our other senses are greater than a person with sight.” (abcnews.go.com)

Obviously, to this blind individual, realism is key, as is accurate representation. Garrett/Lucius would be the more likely of the characters to meet her approval in that manner, with the exception being that his senses are portrayed as heightened, and in the movie he is a skilled fighter, making him too ‘superhero-y’. The character of Emrys certainly falls into both those categories, providing both an inaccurate representation of a blind boy as well as relying on the ‘if you are a good person, you will be healed’ trope.

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Image is of the cover of T.A. Barron’s ‘The Lost Years of Merlin’

Magical healing is a much more prevalent theme than anything showing a disabled person having a happy life when it comes to fantasy novels. This is the case in Eon by Alison Goodman. The premise of the novel focuses much more on the main character’s gender and the role of gender in the society rather than the fact that she, a girl named Eona, has a hip that was crippled in an accident/attack. Because of this, she walks with a severe limp. Eona lives in a society that is highly patriarchal, disguised as a boy named Eon. In the beginning, she has been chosen to compete for the magic granted yearly by one of twelve dragons, and part of the ceremony to prove her worth involves a series of physical martial-art style stances, of which she is not capable of performing one of the more difficult ones. Fortunately for her, she finds a legal precedent to change the one stance she cannot do to a simpler one, and is allowed to take part in the challenge. The people around her view this accommodation as a sort of annoyance. This can easily be read as a reflection of the discomfort, distain, and stigma disabled people face in our own real society. People flat out insult her because of her disability:

“He studied me for a moment. It was like being staked out, naked and helpless, under the burn of the sun.

‘Brannon’s cripple,’ he finally said. ‘Be ashamed. You rob an able-bodied boy of his chance.’” (Goodman 76)

This moment is actually a valuable one, as the reader is meant to empathize with Eona rather than the man insulting her. In putting any able-bodied readers on the receiving end of vitriol like that, the reader will be less likely to spit it themselves in real-life.

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Image is of the cover of Eon by Alison Goodman

As the story progresses, Eona is chosen by a long lost thirteenth dragon to gain power, and she suddenly has much more respect than she ever did as a disabled individual. Her disability still gets in the way, as she has difficulty escaping a man who intended to rape her. However, in other instances, she performs admirably, and not ‘just for’ someone with a disability, as some might put it. She breaks into a secret vault to steal a much-needed object, uses her intelligence to solve the mystery of a code none of her peers could, copes with grueling studies, labor, and physical demands, and forms important relationships with all sorts of people, including the heir to the throne and a transgendered court lady. In short, Eona is a complex character defined by her struggles, the society around her, and her own determination and humanity.

But like the case with The King’s Damosel, the end of the book is where things become slightly problematic.

“Clutching together the remnants of the tunics, I started toward the gate. Even as I took the first step, I knew something fundamental had changed; my bad hip was flexing into a new stretch of muscle and sinew. No pain. No awkward gait. I stopped, disoriented, then stepped forward again. A longer stride that should have buckled into a limp. But it was straight and true. I yanked back the edge of the tunic and touched the pale skin over my hip. It was smooth. No scar. I was whole again. A laugh broke out of me; my dragon had healed me too.” (Goodman 522-23)

Through accepting herself as a female and saying her true name, Eona rather than Eon, the magic of the dragon she is bonded to heals her body. This is unnecessary. She had achieved so much and gotten so far with her disability, and yet her reward is to have it removed. As mentioned earlier, this is the trope of magical healing. This has the potential of being extremely damaging to society’s psyche as it not so subtlety indicates that Eona’s sort of physical disability is something good people do not have or, at least, do not have for long. When abled-body-ness is grouped together with goodness, the logical conclusion is that those who are not able-bodied are bad in some way, that they’re being punished or haven’t repented for something or other. In Eona’s case, she was a very self-hating, poor individual with few friends. By the time she reached the point where she was cured of her disability, she had accepted herself, gained friends, and had more money/luxury than she knew what to do with, in addition to performing good feats. It is as if the book is telling us that working towards goodness and self-acceptance will magically heal disabilities when in reality that is not the case.

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Image is of the cover of Eona by Alison Goodman, the sequel to Eon

The scary fact is that some people believe this, even though there is no empirical evidence for magic in the real world. People believe that having a disabled child is a god punishing them for making fun of a kid in a wheelchair when they were younger. People believe that those with certain mental illnesses are inherently bad people not to be around. They avoid looking at or talking with people who have visible disabilities as if they had a plague or something contagious. Books like Eon present an opportunity to show a disabled main protagonist as a full human being, with good traits and bad traits just like anyone else, and potentially unrelated to their disability.

Eon’s disability could have been a fantastic representation to a little girl with a physical disability, to show her that someone like her who maybe uses a walker can be the heroine of a fantasy story. Instead, it shows her that even if the heroine is disabled, the fact that she is a heroine means she will not remain disabled. If that little girl never learns to walk like an able-bodied person, the book tells her that she is simply not the heroine of her own story because she hasn’t been healed, or that she is not good enough to deserve healing.

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Image is the cover of ‘The Curious Incident of the Dog in the Night-Time’ by Mark Haddon

The last book to be discussed is The Curious Incident of the Dog in the Nighttime by Mark Haddon. While not fantasy like the other two novels, it is still a fiction piece – and one which has become infinitely more popular than either The King’s Damosel, The Lost Years of Merlin, or Eon. It has been hailed by some as textbook on Aspergers, and some people even claim that it helped teach them how to interact with people on the autism spectrum. This is terrifying. Part of the problem is that some of the problematic aspects of the book are subtle, and in being so are possibly more damaging than something blatantly offensive because the reader doesn’t realize what they may be internalizing by reading the novel until it’s too late, or perhaps even never.

The main character whose perspective the narrative is told from, is Christopher Boone, a teenage boy with an unspecified mental/social disability. His character comes across like someone googled ‘What are Asperger’s syndrome’s symptoms?’, took the first list they found off of the horrible organization Autism Speaks, and made a character based off of that. It reads like a neurotypical person trying to understand the thoughts of a neurodiverse person rather than the actual thoughts of someone on the autism spectrum. This is in fact similar to the reverse of the personal experience I had in my own writing – neurotypical people reading my work could tell something was off, that maybe I was not really one of them but rather was pretending. With Haddon’s work, neurodiverse people can tell something is off, that he is pretending. Instead of creating a real character, Haddon instead created another “Rain Man” – aka a stereotypical portrayal of a white male autistic savant mathematician.

You can read more about my thoughts on this particular book and the harmful impact it has here: https://somegirlwithabraid.wordpress.com/2018/07/07/the-curious-incident-of-the-curious-incident-of-the-dog-in-the-nighttime-a-literary-review/

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Image is of a picture used on an alternative cover of The Curious Incident of the Dog in the Night-Time by Mark Haddon

Complimenting my own thoughts on this book is a review I found online by Elizabeth Bartemess that hit the nail on the head in discussing this issue:

“Abuse, bullying, and casual insults are unfortunately common experiences for autistic people, and it isn’t inaccurate of Haddon to portray them. But the way he portrays them is terrible. By showing Christopher as not noticing or responding to insults and abuse, he suggests that being cruel to autistic people isn’t that bad. Readers who see an autistic person being mistreated are less likely to stand up for them if they believe they won’t even notice. By showing him being treated badly by multiple people he meets in public, Haddon sets the expectation that this kind of treatment is universal, inevitable, and normative. These interactions could have been used to show non-autistic characters modeling effective support skills, but were not.

[…] Summary – Curious Incident portrays the autistic protagonist as unsympathetic, elitist, violent, and lacking empathy. It portrays abuse, abandonment, and gaslighting as normal (or even justified) response[s]. The book normalizes abuse, presents the autistic protagonist as responsible for it, and suggests that he is not harmed much by it. This happens towards autistic people in real life, too, and it is very harmful.” (disabilityinkidlit.com)

Some interesting facts I uncovered while researching the author’s understanding of the condition he was writing about came to light in the form of direct quotes from Haddon himself. While he originally described Christopher as an Aspie, even putting “Asperger’s” on the cover of his book as a description, he has since retracted this and has had this to say about the subject of autism:

“I have to say honestly that I did more research about the London Underground and the inside of Swindon Railway Station, where some of the novel takes place, than I did about Asperger’s syndrome.”

“I know very little about the subject. I did no research for Curious Incident (other than photographing the interiors of Swindon and Paddington stations). I’d read Oliver Sack’s essay about Temple Grandin and a handful of newspaper and magazine articles about, or by, people with Asperger’s and Autism. I deliberately didn’t add to this list. Imagination always trumps research.”

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Image is of books in a library, indicating research

Except that imagination does not trump research when an author is addressing something so based in the real world, that affects so many real people. Certainly, imagination is key if creating a fantasy world where rivers float through the sky and mountains are inhabited by orcs, but not when describing a condition many people actually have. Such a work by its nature requires extensive research or personal experience, or it risks creating harmful work full of information that will harm people and society in real-life with its influence. Part of the harm taken from this book is that despite Mark Haddon’s admission that he knows very little on the subject, this book is being used as a teaching tool. One doctor, Dr. Alex McClimens, read Curious Incident and went so far as to say, “The magnificent essay in communication is compulsory reading for anyone with the slightest interest in autistic spectrum disorders.” Except that it should not be, for all the reasons listed above.

Part of the reason I chose this book to discuss is to show an example of inaccurate representation. While it is harder to inaccurately represent a blind person or a girl with a non-functional leg, because they can still be neurotypical people who have the same thoughts as any able-bodied person would in those situations, it is very easy to misrepresent mental illness/conditions of any sort. This is especially the case when the representation is also the point of view of the story being told by a neurotypical author. Accurate representation is vital to the visibility of the neurodiverse community. Without it, it is worse than erasure or absence. Just like it is good for a little girl who walks with a cane because of a birth defect to have a potential hero that mirrors her in Eon, it is good for autistics to have a hero that they can see themselves in as well, if only to know that their internal voice is one that exists in the world and is a valid voice.

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Image is of a little girl dressed as a superhero

This leads to the reason I chose each of these books. While I am interested in all the specific topics, two of these books were chosen in the interest of research for my own fantasy novel manuscript in progress of writing this paper: Eon and Curious Incident. As I stated in the beginning, my main character, a fifteen-year-old girl named Crimson, is a mirror of my own mind: an autistic mind. Curious Incident showed me how vital accuracy and avoidance of harmful stereotypes are when writing a neurodiverse character. My Crimson strives to be a complete human being: her father does the best that he can for her. People do not regularly abuse or insult her, and the ones that do are clearly shown as being in the wrong and affecting her. She has her differences, but I try to make them endearing or at the very least interesting and realistic. She develops friendships, and eventually even a romantic relationship. This is something I find lacking in many discussions about autistics, the idea of romantic and sexual relationships. In many cases, autistics are viewed as being incapable or uninterested in such things, but that is not the case at all as many get married and have children. I myself am married to a wonderful neurotypical and we plan for a family in the next five years or so: proof that this stereotype is false. I hope that Crimson can be an example to any who read her as to what a human, autistic mind is really about, and that autistics are not dangerous, cruel, or undeserving of love. I also want her to be a role model for autistic pre-teens and teens to look up to as their peer, to make them feel seen.

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Image is of a fantasy castle

As to Eon, I chose this novel because of Eona’s physical disability due to the fact that one of my secondary characters, a girl named Chulensa, has a similar disability. This is something I needed/need to research thoroughly and excessively as I have no personal experience with this sort of disability. The major difference between Eona and Chulensa is that Chulensa was born with her disability, while Eona acquired it. There are few examples of mobility-impaired main characters in fantasy, and what I took away from Eon (and The King’s Damosel) is that I should not under any circumstances magically cure her. I also took away that she needs to be a strong character in her own right, with a personality beyond simply being disabled. Like Crimson, I have striven to create personality traits that are relatable, relationships that are human, and a romantic relationship. She is not bitter over her disability quite to the extreme as Eona is, and her strongest personality trait is her love and devotion to traditions from her heritage, her desire to be a part of continuing them and learning all she can from her elders. She also becomes involved in a romantic/sexual relationship. Like autistic people and characters, sex and romance are not topics associated with physically disabled people. This is a hurtful presumption that needs shattering. While writing her, the most natural chemistry between her and another character ended up being with a supernaturally able-bodied female, adding several more layers of intrigue to her character which in turn add to her humanity as an individual beyond being simply ‘the disabled’ character. I feel after reading these novels that I am on the right track, but to ensure that I am I will continue to seek out fantasy which includes disabled characters of all sorts.

The world needs more positive representation of all sorts, and the most underrepresented minority of all is the entirety of all disabled communities: accurate visibility will promote their mental and social health and improve their lives by giving them fictional characters who speak with their voices. I hope to add to that growing library, and readers should strive to seek out and support other authors they find who are dedicated to accurate visibility, so that our own real-world society might continue to improve.

 

If you like what you’ve read, like, share, comment, and/or follow to show support! You can also find me on Facebook as Some Girl with a Braid, or on Twitter @A_F_Caldwell.

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Image is of a fantasy castle with a blue roof

Works Cited

Bartmess, Elizabeth. “Review: The Curious Incident of the Dog in the Night-Time by Mark Haddon.” Disability in Kidlit. N.p., 2015. Web. Oct.-Nov. 2016.

 

Barron, T. A. The Lost Years of Merlin. N.p.: Penguin Group, USA, 1996. Print.

 

Caldwell, Amalena. Castle of the Unwanted. Collection of Amalena Caldwell, FL. Unpublished manuscript.

 

Chapman, Vera. The King’s Damosel. London: Avon, 1978. Print.

 

Goddard, Drew. Daredevil. Prod. Stan Lee, Kris Henigman, Cindy Holland, Alan Fine, Joe Quesada, Dan Buckley, Jim Chory, Jeph Loeb, Drew Goddard, Steven S. DeKnight, Marco Ramirez, Doug Petrie, and Kati Johnston. Netflix. New York City, New York, 2015-2016. Netflix. 16 Apr. 2015. Web.

 

Goodman, Alison. Eon: Dragoneye Reborn. New York: Viking, 2008. Print.

 

Haddon, Mark. The Curious Incident of the Dog in the Nighttime. United Kingdom: Jonathan Cape, 2003. Print.

 

Haddon, Mark. “Asperger’s & Autism | Mark Haddon.” Asperger’s & Autism | Mark Haddon. N.p., 16 July 09. Web. 30 Nov. 2016.

 

Olear, Greg. “When Popular Novels Perpetuate Negative Stereotypes: Mark Haddon, Asperger’s and Irresponsible Fiction.” The Huffington Post. TheHuffingtonPost.com, 18 Nov. 2011. Web. 30 Nov. 2016.

 

Quest for Camelot. Dir. Frederik Du Chau. Prod. Andre Clavel, Dalisa Cohen, and Zahra Dowlatabadi. Screenplay by Kirk De Micco, William Schifrin, Jacqueline Feather, and David Seidler. Perf. Jessalyn Gilsig, Cary Elwes, Jane Seymmour, Pierce Brosnan, Gary Oldman, Eric Idle, Don Rickless, Bronson Pinchot, Jaleel White, Gabriel Byrne, and John Gielgud. Warner Bros. Animation, 1998. Videocassette.

 

Rain Man. Dir. Barry Levinson. Prod. Mark Johnson. Screenplay by Barry Morrow and Ronald Bass. Perf. Dustin Hoffman, Tom Cruise, and Valeria Golino. MGM/UA Communications Company, 1988. Videocassette.

 

Robinson, Bryan. “Daredevil Not Quite the Blind Man’s Hero.” ABC News. ABC News Network, n.d. Web. 23 Nov. 2016.

 

Roddenberry, Gene. Star Trek: The Next Generation. Prod. Gene Roddenberry, Maurice Hurley, Rick Berman, and Michael Piller. First-run Syndication. 1987-1994. Television.

 

Stevenson, Robert Louis. The Strange Case of Dr. Jekyll and Mr. Hyde. Lincoln: U of Nebraska, 1990. Print.

 

 

Anti-Depressants were my Crutch – Why that’s not Bad

Anti-depressants were my crutch.

Being autistic isn’t necessarily tied to depression and the like, but it is very commonly a co-occurring and difficult condition to manage. As such, I’d like to talk about medication. If you’ve been on anti-depressants, you know what I’m talking about when I call anti-depressants a crutch: all the people who suddenly come out of the woodwork to tell you that if you just try this diet, do yoga, and smile more, then everything will be better and you won’t need to give big pharma all your money. That you’re just using the pills because you’re too lazy to do things right, or the way they think you should do things. As if no one who goes on anti-depressants has ever thought of trying alternatives before getting a prescription.

Here’s the thing about crutches – picture someone who needs a physical crutch. Maybe they lost a leg due to an accident. Maybe they broke a bone and won’t need a crutch forever. Maybe they were born with a condition requiring that they use mobility assistance. The thing is that if you take a crutch away from someone who uses it to walk, they’ll lose their balance and fall flat on their face because they physically cannot walk without it, and taking away that crutch actively harms them rather than allowing them to function in the world. So why would anyone ever say “it’s just a crutch” as if that means it’s not necessary? As if it means it’s not vitally important?

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Image is of a woman on crutches working with a physical therapist to walk.

Really, that should be the end of the argument. But people don’t want to leave it there. They’ll argue that it’s just all in your head, and with enough willpower then you can fix yourself and “just be happy” or “just stop being anxious” – as if it were that simple.

Mental illnesses, disabilities, and conditions ranging from the severe and debilitating to the mildly annoying are real illnesses, disabilities, and conditions. Your brain is an organ. Just because you can’t physically see it doesn’t mean you can just think your way out of something –  though I will acknowledge that the brain is a powerful organ and it can help to try. That’s just not always enough.

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Image is of two brain scans, demonstrating the physical difference between a depressed brain (left) and a non-depressed brain (right).

No one would ever go up to a person with diabetes and tell them to stop taking insulin because big pharma just wants their money and is pumping them with poisons. You know what happens if you take away a diabetic’s insulin? They die.

Your brain is not that different from your heart – it just happens to be vastly more complex and difficult to understand. However, it is not difficult to understand that just like your heart, it is an organ. And sometimes organs get sick or have trouble. If that’s the case, then medicine is there to help. It might take time to figure out exactly which medicine, but you should never feel ashamed if you need medication for a mental condition of any kind. You are strong for getting help, for recognizing that there is something your brain isn’t doing right. Perhaps you don’t produce enough natural serotonin. In which case, store bought is just fine.

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Image is a meme that says: If your brain can’t produce its own serotonin and norepinehrine, store-bought is fine.

The Curious Incident of “The Curious Incident of the Dog in the Nighttime” – A Literary Review

Spoilers ahead.

The book The Curious Incident of the Dog in the Nighttime is an award winning book by Mark Haddon, famed for its depiction of an allegedly autistic protagonist.

It has been hailed by some as textbook on Aspergers, and some people even claim that it helped teach them how to interact with people on the autism spectrum. This is terrifying. Part of the problem is that some of the problematic aspects of the book are subtle, and in being so are possibly more damaging than something blatantly offensive because the reader doesn’t realize what they may be internalizing by reading the novel until it’s too late, or perhaps even never.

The main character is Christopher Boone, a teenage boy with an unspecified mental/social disability. His character reads as if someone googled ‘What are Asperger’s syndrome’s symptoms?’, took the first list they found off Autism Speaks’ website, and made a character based on that. It reads like a neurotypical person trying to understand the thoughts of a neurodiverse person rather than the actual thoughts of an autistic. This is in fact similar to the reverse of the personal experience I had in my own writing – most neurotypical people reading my work could tell something was off, that maybe I was not really one of them but rather was pretending. With Haddon’s work, most neurodiverse people can tell something is off, that he is pretending (as I noticed in reading reviews by other autistics). Instead of creating a real character, Haddon instead created another “Rain Man” – aka a stereotypical portrayal of a white male autistic savant mathematician.

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Image is of a blurred out white male behind a glass plane, writing mathematical equations on it.

Not all aspects of Christopher’s character are negative or inaccurate – a fact which helps cover up the insidiousness of other aspects of the book. He has a fixation with the color of cars indicating what his luck for the day would be, stimming, and a few other realistic things along those lines help to build realism and potential understanding of such behaviors in neurotypical readers. However, his main flaw is his lack of humanity. Many people don’t understand that autistics do indeed have the capacity for empathy – in fact, quite a few have too much empathy to the point of being overwhelmed and not able to handle it, as I’ve written before in my review of Netflix’s Atypical. Sometimes autistics do not identify situations that require empathy, or do not understand them – but that is completely different from not being capable of empathy at all.

Christopher does not care about anyone or anything other than himself. The catalyst for the beginning of the book is Christopher discovering a dead dog and deciding to try to solve the mystery of who killed it, but even that is not done out of a sense of empathy for the murdered animal. It is entirely out of his fandom for Sherlock Holmes and his desire to solve the mystery itself. He does not care for his mentor, his neighbors, or his father, and his only reason to care about his mother comes across as a sense of selfishness – which the book ties into some of the problematic issues with their relationship, and is in and of itself problematic.

Christopher is also a consistently violent character, and not just in a triggered out of control meltdown way (it should be noted that the description of his meltdowns in the book are pretty accurate, though obviously not universal). He thinks about wanting to stab someone in response to anxiety induced by an important math test, which is not at all a realistic response to anxiety over a test. Some autistics can be violent in response to overwhelming sensory input, or even in a self-defense sort of way to overwhelming social contact, but most are not naturally violent. The natural thought to being in an uncomfortable situation is want to avoid or escape the situation or to think about a place that makes them feel safe that they would prefer to be in – the natural reaction is not to wish to brutally murder someone. Christopher even has that ‘flight’ response towards another uncomfortable situation, when he learns that his father killed the dog from the beginning and had lied about his mother being dead.  Christopher’s response is to escape. Yet for the test, he casually wants to murder someone. One of his favorite fantasies is that everyone in the world has died, leaving him alone. He could have easily thought of simply being someplace alone, but wishing death on everyone on the planet seems to be overkill.

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Image is of a man standing alone on a rocky beach.

In presenting him like this, the book plays off of the stereotype that all Aspies are just a hair away from deciding to go on a shooting spree. It is a harmful stereotype because of the way it leads to neurotypical people sometimes treating ASD people. Their initial response in learning that someone is an Aspie can become one of fear and suspicion fueled by the paranoia this stereotype produces. It does not matter whether or not they know anything about the individual in front of them: automatically they assume that anyone with Asperger’s is dangerous, leading to more social problems for those who already have enough.

Another example of something a little more subtly horrifying in this book is the way that the people around Christopher interact with him and treat him. His father is abusive, his mother abandoned him, and the other people he encounters look down on him. The two that stand out the most are of course his mother and father. His father drinks and hits him hard enough to bruise him – and no one seems to care. It is almost as if, because he is autistic, it is alright. Christopher has a mentor/psychologist who even asks him about the bruises, but he does not feel like talking about it so she never investigates into the possibility of abuse even though that is her job. His father also threatens him and lies to him, telling him that his mother died a year and a half previously even though she was alive and writing to him. Christopher hardly reacts to the abuse, except for when he learns about his mom still being alive. It’s almost like background noise whenever someone insults him. By portraying an autistic character as not truly harmed by abuse, it makes it seem almost alright to abuse real autistic people. Because if someone doesn’t care or feel harmed by something, then why stop? Even now, violent electric shocks are being legally used in the USA as a way to punish autistics in institutions for doing harmless things like stimming. Because if autistics aren’t bothered by abuse, then where’s the harm? (Please note, that was sarcasm.)

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Image is of a teenage boy in a hoody sitting in a semi-fetal position.

The mother is barely any better. She blames Christopher for ruining her marriage despite the fact that she is the one who had an affair – sounding like an Autism Speaks promotional video using autism as a tool to scare couples. This is another trope/harmful stereotype about autism, that having a child who is on the spectrum means that a couple’s marriage is doomed. As if the trials that come with having a special needs child are the child’s fault if the marriage was unstable to begin with. And no one, not even Christopher himself, cares about any of this. The only things Christopher really cares about is that his father lied about his mother’s death, and that his father killed the dog in the beginning. But even these things – things that are very important – no one else in the book cares about. The fact that the father got drunk and literally murdered an animal in cold blood is never prosecuted or seen as indicative of violent tendencies. Perhaps the worst part is that the book itself doesn’t care. It pretends that because the father apologized at the end and bought Christopher a dog (because a man who gets drunk and murders dogs and hits his son should totally be allowed to buy a dog and keep custody of his son) that it’s all okay. Somehow, that’s supposed to be a satisfying conclusion to the whole novel. Overall it’s a terrible example of humanity.

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Image is of the cover of the book “The Curious Incident of the Dog in the Nighttime” by Mark Haddon

Some interesting facts I uncovered while researching the author’s understanding of the condition he was writing about came to light in the form of direct quotes from Haddon himself. While he originally described Christopher as an Aspie, even putting “Asperger’s” on the cover of his book as a description of his character and story, he has since retracted this and has had this to say about the subject of autism:

“I have to say honestly that I did more research about the London Underground and the inside of Swindon Railway Station, where some of the novel takes place, than I did about Asperger’s syndrome.”

“I know very little about the subject. I did no research for Curious Incident (other than photographing the interiors of Swindon and Paddington stations). I’d read Oliver Sack’s essay about Temple Grandin and a handful of newspaper and magazine articles about, or by, people with Asperger’s and Autism. I deliberately didn’t add to this list. Imagination always trumps research.”

Except that imagination does not trump research when an author is addressing something so based in the real world, that affects so many real people. Certainly imagination is key if creating a fantasy world where rivers float through the sky and mountains are inhabited by dwarves, but not when describing a condition many people actually have. Such a work by its nature requires extensive research or personal experience, or it risks creating harmful work full of information that will harm people and society in real life with its influence. If I were to ‘imagine’ that all gay people were obnoxious, promiscuous, sex-obsessed, riddled with STDs, and incapable of romantic love in the way heterosexual people are, then that would be inaccurate and extremely offensive and harmful to a lot of people. That’s essentially what Haddon has done.

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Image is of  the interior of Paddington station, referred to by Haddon

Part of the harm taken from this book is that, despite Mark Haddon’s admission that he knows very little on the subject, this book is being used as a teaching tool. One doctor, Dr. Alex McClimens, read Curious Incident and went so far as to say, “The magnificent essay in communication is compulsory reading for anyone with the slightest interest in autistic spectrum disorders.” Except that it should not be, for all the reasons listed above. Without accuracy and research, paper becomes poison.

Intentions matter when you write. Haddon did not intend to write an award winning, widely read book to be turned into a musical and used as a textbook on a subject he did little research on, yet he did. His intention seemed to be to write a semi-thriller/mystery using mental illness as a prop to draw in readers (as unfortunately many writers do). If he had considered the impact his work could have on various communities, perhaps he would have sharpened his intentions and decided that imagination is not better than research. Perhaps he would have written a novel whose character could help the autistic community in visibility and their treatment rather than creating an un-sympathetic, un-empathetic mathematically inclined stereotype.

 

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Image is a promotional picture for “The Curious Incident of the Dog in the Nighttime” musical

Autistic Moments – Bleeding Lips

CW for self-harm

For those of you who don’t know, stimming is something that often goes hand in hand with autism. It’s short for self-stimulation, which is a way of helping those with sensory issues that are often associated with autism cope. It can help some focus – as was the original purpose of things like fidget-spinners and fidget cubes. It can be almost anything, such as hand-flapping, spinning, rocking, verbal stims in the form of sounds or words, tapping your foot up and down, playing with a click pen, etc. Stims are helpful in some way, and most are quite harmless. If you see an autistic person stimming in a way that seems odd but is harmless, don’t stop them, just let them do what they need to do.

That said, not all stims are harmless.

Now, I’m not talking about full blown self-harm in the form of something like cutting or burning due to depression or other mental conditions. This is more about an instinctual, subconscious thing. Such as me sitting here biting my lip while I type this.

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Image is of three attractive girls biting their lip in a sexy way, and the fourth is of Marge Simpson biting her lip in a comical manner.

When I say that I bite my lip, I don’t mean something cute and coy, like a movie star being flirtatious in a romance film. I mean that I bite my lip until bits of skin start to peel off, and then I end up bleeding. Sometimes I end up bleeding rather heavily, because I’ll be absentmindedly picking or biting on my lip and not realize just how thick the piece of skin that I’ve begun to tear is, and end up with a gash.

As someone who does this harmful type of stim… I honestly don’t have an answer as to whether you should stop someone doing it. I know I should say, “Yes, try to provide alternatives for the person stimming. Try to stop them from doing this, they’re hurting themselves.” But at the same time… I really love biting my lip. It’s one of my favorite stims, and I do it a lot when I’m focusing on something or deep in thought. Whenever my mom sees me doing it, she tries to get me to stop, which just annoys me.  So… to be perfectly honest, I’m on the fence about what to do.

Another time I started stimming harmfully was in high school, when swine flu was scaring everyone and they were giving shots for it on campus. Shots terrify me. I’ve gotten a little better over the years: my current method to deal with medical needles is to read out-loud from a random Wikipedia entry. But back then, I hadn’t quite figured out how to deal with it. To make things worse, I’d gone into the situation believing that there was an alternative nasal spray available. It was there, but not for me (I believe it was there for a handful of students who medically couldn’t get the normal shot for whatever reason).  So, I instantly freaked out, and started biting my arm quite harshly as I sat down to distract me from the fact that they were about to stick me with a needle. They ended up having I believe two teachers physically holding me down and pulling my arm out of my mouth while I screamed before they could manage to get a shot in me. (And yet still no one considered I was autistic for another four or so years…)

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Image is of a shot with a tag saying “Get your flu shot.”

I think this is the easier stim for me to address, because I’ve moved on and learned better coping for it. For me, I needed a significant distraction with this stim. In that moment of panic, I couldn’t think of anything other than using pain to get through my fear of shots. Now, with the proper preparation, I can handle it. I need my brain distracted. For someone else who maybe bites themselves, it could be an oral fixation. There are some truly wonderful places around the internet where you can find necklaces and bracelets to cater to this need, and that might be a good alternative.

The truly dark side of self-harming stims is that you can cause health concerns. If you bite yourself too hard and end up breaking skin, there is a lot of bacteria in your mouth that could cause serious problems for the wound. Biting my lip could leave me at greater risk for contracting/unknowingly passing on something like cold sores. For me, something that helps curb my lip biting a little is chapstick or lipstick. I’ve found if I’m wearing it, I’m much less likely to pick on my lips. But, I don’t often wear it… simply because I like biting my lip. I should get better at it… and maybe I will in the future.

I have noticed that for me, it’s not the pain that is the reason for this stim. It’s the pealing action. I similarly have a fixation with pealing dead skin from the bottom of my foot (sorry if that’s gross, but that’s just how it is for me). So, a good alternative that I should try is something like pealing dried glue. But as long as I have dried lips, I’ll probably find myself picking on them.

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Image is of four differently flavored chapsticks.

Even if it’s hypocritical of me, I want to encourage those of you who have self-harming stims to search for alternatives, at least to ease up a little on the potential harm. Example: I do sometimes wear chapstick now, while five years ago I would have thrown it out and bitten myself more. If your fixation isn’t on the pain itself, focus on what the sensation you’re craving is when the pain is taken away, and find something that provides that sensation without causing harm.

If your fixation is the pain itself, then look for sources online that help with people who struggle with self-harming caused by depression and the like. They often provide suggestions for alternatives, such as wearing rubber bands and snapping them. I won’t tell you to not cause yourself pain because of some philosophy that pain itself is a ‘bad’ thing. Honestly… I don’t think so. People endure pain for tattoos and piercings, some people enjoy pain in ‘unconventional’ kinky settings, lots of people eat food so spicy that it causes them to cry just for fun; pain itself isn’t a problem in my eyes. Harm is, because harm carries health risks, and no stim should cause health risks. If your need is an oral stim, you wouldn’t chew on something with lead paint. The concept is the same. Take care of yourselves. You’re important.

For those of you who are neurotypical and reading this… please don’t judge me or others too harshly. There’s something soothing about my stims. Even the not-so-nice ones. I’m working on it in my own time.

If you like what you’ve read, show your support with likes, comments, and shares. If you like it so much you want more, follow me here on wordpress, on facebook at Some Girl with a Braid, and/or Twitter @AmalenaCaldwell.

Autistic Moments - Bleeding Lips

Image description: Some Girl with a Braid Presents: Autistic Moments – Bleeding Lips

First box: Some Girl with a Braid sits at her computer, reading absentmindedly.

Second box: Some Girl with a Braid continues to sit and read absentmindedly, with some blood beginning to come from her lip as she bites it.

Third box: Some Girl with a Braid’s lips are now bleeding rather heavily, while she continues to read absentmindedly.

Fourth box: Some Girl with a Braid’s lips continue to bleed, but she notices and says, “I really should stop doing this.” She continues to bite her lip.

My Experience with Braces and Retainers

A while back, I had an interesting conversation with a mom who was concerned about the possibility that her autistic child may need braces down the line. As someone who’s autistic and who had braces for several years, I volunteered to talk about my experience. Now, I think this might make for a good post for others to read. I don’t necessarily have great advice as to how to cope with braces, since I’m not sure how well I did coping myself. It was just something I knew I had to do, and at the time I thought of braces as teeth jewelry, so part of me liked the idea of them and was willing to put up with them because I thought they were beautiful. But that aside, almost everything about having braces was awful.

Braces definitely caused me serious sensitivity issues. That was the most memorable part of braces. I’ve always had very sensitive teeth, to the point that I don’t like drinks with ice in them because the cold hurts my teeth. When the braces were put on, it tasted awful in my mouth, and felt uncomfortable. I sat through it because I knew I had to and I’ve never had an issue with the dentist, but it was really awful. Every little adjustment that was made hurt, and the rubber bands that tugged at my teeth made it difficult to open my mouth.

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Image is of me at age sixteen with braces.

Eating was awful. For up to two weeks, even biting a blueberry after an adjustment was painful. I had a lot of soup, yogurt, mashed potatoes, ice cream, and other such mushy food I didn’t need to bite. I also have always had a bit of an unhealthy oral stim of biting my lip, and since I couldn’t do that well with my teeth encumbered by braces, I ended up rubbing the insides of my cheeks against the metal, where it would get caught and eventually scar. I honestly don’t remember what my mouth felt like without scars lining the insides of my cheeks. I’m also fairly certain that the slight indents I can feel on my lower lip are a result of braces and rubbing against them as well.

I didn’t know I was autistic at the time when I had braces, and I think that knowledge might have helped me figure out how to cope. There were some nights I went to sleep crying, but I did my best to hide that from everyone else because I didn’t want to be seen as being overly sensitive – I already was too sensitive, reacting to anything I had to bite too much, finding it all too uncomfortable. There was an object in the kit the orthodontist’s office gave that included a rubber bite piece that was meant to be bitten on to somehow help with the pain. I never quite understood this because biting down hurt, but it did have a soothing texture, so sometimes I’d just put it in my mouth as a distraction without biting. In retrospect, I suppose this was a type of stimming.

I’ve never had an issue with dentists, probably because I associated them with stickers for a long time, which were enjoyable. I also liked the sensation of the water and the suction tube that got rid of the water. It was interesting and kind of fun, so I never felt any anxiety about the dentist or orthodontist. As such, I didn’t really develop any coping mechanisms I can talk about. What I do want to talk about is retainers.

 

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Image is of me, likely around the age of fifteen, with braces on my teeth.

I think one of the important things to consider before either getting braces yourself or getting your child braces is retainers. No one told me at the start of the process that I would have to wear a retainer for the rest of my life to keep my teeth straight, or they’d go right back to being crooked. My teeth aren’t all that bad. I have a slight under-bite and the front of my lower teeth are a little crooked, but they’re really not all that bad. So, the prospect of wearing a severely uncomfortable piece of unforgiving plastic and metal in my mouth every night for the rest of my life to just keep my bottom front teeth from being a little off was unacceptable to me. It wasn’t worth it. When I asked how much longer I’d have to wear the retainer and they told me forever, I remember something in my head flipping and thinking, “Nope, I’m done.” I stopped wearing my retainer, and essentially made the whole experience a massive waste of money, pain, and time for everyone involved. That’s the most important thing to consider – will your child wear the retainer for the rest of their life on their own, or will they find the sensation too uncomfortable and abandon it when they get the chance?

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Image is a slightly creepy looking close up of my teeth as they are now, with my lower front teeth a little crooked.

I’m not an expert on teeth, so I won’t claim to know for certain if there’s something braces can fix that doesn’t require a retainer. In which case, if such an issue exists, maybe it’s worthwhile to have braces. All I can say for certain is that for me, that wasn’t the case. And, I definitely think that if braces are just there to fix something relatively minor, like the slight crookedness in my lower front teeth, then maybe consider that it’s just something that it’s okay to live with. I’m not going to have serious health problems because of the minor crookedness in my lower front teeth. It’s not severely out of place to the point of being a social hindrance. And so, I vote in favor of thinking critically about whether all that pain and money is really worth it for those considering braces, especially if you’re autistic and have sensitivities or anxieties about the dentist that non-autistics might not have.

If you have a real issue with your teeth, something more extreme than my slight crookedness, then it might be worthwhile to get braces. Talk to a dentist about the repercussion and make an informed decision. If you are making this decision for your autistic child, be as understanding as possible – the pain is something they might not know how to handle, and needing comfort objects or easy to eat food for a long while may be what they need to do to deal with it. I remember the pain lessening a little, but I was afraid of it still, so I still wanted soft foods. As long as the soft foods include healthy foods, there’s nothing wrong with that, and let your kid go at their own pace. Regardless of how crooked your teeth are or aren’t, remember to brush and floss!

 

If you like what you’ve read, show your support with likes, comments, and shares. If you like it so much you want more, follow me here on wordpress, on facebook at Some Girl with a Braid, and/or Twitter @AmalenaCaldwell.

Why I Don’t “Light Up Blue”

“Light it up Blue” is a campaign for autism awareness started by Autism Speaks, which most autistic adults consider a hate group. For those confused as to why autistics generally don’t like Autism Speaks, think of it like this:

Imagine there was a group called “Homosexuality Speaks” run almost entirely by straight people who put all but 4% of their donations towards advertising for themselves and funding research on how to identify the gay gene in utero so that parents could abort gay children and fight the gay epidemic, as well as finding a cure for homosexuality. As they do this, imagine that these straight people gain popularity as “the voice” of the gay community, all while they actively do their best to silence gays from being allowed to speak up on their own behalf. Pretty sure the LGBT community would not support them. So that’s why most autistics don’t like Autism Speaks – they do not speak for autistics.

Anyway, since it is now “Autism Awareness Month”, I wanted to discuss the specific color blue, the concept of awareness, and how it relates to autism.

The color blue was chosen to represent autism because the people choosing the color thought that autism was a ‘boy’s only’ club. They chose blue because it’s associated with the male gender, and they wanted to exclude all women and girls (and, it’s safe to assume, all others as well) from the autism spectrum. I don’t believe this was out of any sort of malice, but simply ignorance. Which, once you learn better, no longer excuses it. I cannot “just wear blue to support autistm awareness!” (as I have been told to ‘just do’) because I will not wear something meant to represent my condition but also meant to exclude me because of my gender.

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Image is of a blue mustache labeled “It’s a boy”

Which is a real shame, because I look good in blue – it’s one of my favorite colors – and I loathe that it was ruined in the month of April by this campaign.

Now, you might say, “Well, that’s what it used to represent. It doesn’t anymore, now it’s all autistics! It’s just a support thing for awareness!”

There’s several things wrong with that. The first is that blue has been chosen by a specific brand to represent their specific brand of autism awareness. That awareness includes telling autistics that they are a burden on society, that we destroy marriages, that we cost too much money, that we are tragedies, that we are an epidemic, and that we need to be cured because they see autism as some sort of antagonistic disease rather than a type of person. “Light it up Blue” is tainted by that message, and so if I were to wear blue, I would not be supporting autistic people. I would be supporting the organization that wants to prevent people like me from being born.

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Image is of two children, a boy and a girl, with the boy covering his ears to block out the sound of his parents, who are arguing behind him.

The second thing that’s wrong with that sentiment is the idea of ‘awareness’. People are aware autism exists. Acknowledgement of the condition’s existence isn’t what autistic people want – we want acceptance. You might think that these two are the same, or similar enough, but acceptance means understanding that some autistics might need special considerations, while awareness promotes fear based on stereotypes. In my experience, awareness shows off how strange, weird, and ‘other’ autistics are, with the underlying message of how autistics need to be changed to fit a more ‘normal’ box, or how we need to be cured/prevented from being born to wipe out this epidemic. Saying things like “one in every sixty-eight children is diagnosed with autism” sounds scary. It’s reminiscent of showing statistics like “In this year, this many people were diagnosed with cancer – here are things to avoid to lessen your chance of cancer.” It wants to create fear – that’s awareness.

Acceptance shows that autism doesn’t have to be scary. Acceptance says, “sometimes someone who’s autistic can be highly sensitive to loud noises, and may wear headphones to help cope. Please do not take them away, insult, belittle, or tease them, as they are simply trying to avoid something painful.” Acceptance means accepting that cutting the corners off of a square peg to fit into a round hole is painful for the peg, and maybe we just accept that it’s not necessary. That we should let people be different, and accept what supports/accommodations they may need rather than forcing them into a mold that doesn’t fit.

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Image is of a square peg, with its corners broken by a hammer, forced into a round hole.

So, what can you do to support autistic people on this most terrifying and overwhelming of months, April, aka ‘Autism month’?

Well, if you’d like to donate, find a good organization, one by autistics, for autistics, focusing on accommodations and assistance rather than promotional material and research. Two good organizations are the Autistic Self Advocacy Network (http://autisticadvocacy.org/) and Autism Women’s Network (https://autismwomensnetwork.org/).

As to colors, the acceptance campaign I am the biggest fan of is Red Instead. It’s exactly as it sounds, and I like the idea of red because it’s the ‘opposite’ of blue – though not pink so that it isn’t strictly a ‘girl’ thing the way blue was chosen. Tone it down Taupe and Light it up Gold are other alternatives, but I’m a fan of red.

Red instead
Image is of me with my husband, and I am dressed in my favorite red dress, with a necklace that has a red gem.

I would also like to give a short opinion on the puzzle piece symbol. I get that some people like it – it’s visible, kinda cute, and a well known ‘autism symbol’. However, I’m not a fan. For one, it’s usually in blue. If it’s not blue, it’s in bright primary colors. Aka, it’s a little childish. There’s enough of a problem with people infantalizing autistics and assuming we’re all children that I don’t think we need to have a symbol alluding to support of that notion. The original puzzle piece was meant to symbolize what a puzzle autistic people are, how mysterious autism is, and how autistic people are ‘missing a piece in the puzzle’ of our humanity. That sounds a little too close to “elevator doesn’t stop at all floors, not the sharpest tool in the shed”, etc. I don’t think I’m a puzzle if someone gets to know me. It takes some effort, but autistics aren’t mysteries. We’re people. Some people think it’s a cute symbol, and if they like it, that’s up to them – sorta similar to how if someone on the spectrum wants to be called ‘person with autism’ rather than ‘autistic’, it’s completely their call. Personally, it’s not for me. I like the neurodiversity symbols like a rainbow infinity symbol or a rainbow colored brain. I think it’s more representative of who we are. Our brains our different, and there is a spectrum of what autism is.

For those who are curious here is a picture of the original puzzle piece symbol relating to autism. I hope that it’s understandable why I don’t care for it:

NASlogo
Image is of the original logo by the National Autistic Society, depicting a child’s crying face on top of a green and black puzzle piece.

 

If you like what you’ve read, show your support with likes, comments, and shares. If you like it so much you want more, follow me here on wordpress, on facebook at Some Girl with a Braid, and/or Twitter @AmalenaCaldwell.

New Autism Magazine – Masking, Issue 1

Recently, I was in contact with the amazing Olivia Armstrong to do an interview for a new magazine, Masking. It’s all about showing autistic voices talking about issues that matter to the autistic community. This is great for everyone to read – whether you’re autistic yourself, have a family member or friend who is, or just want to be more informed. It’s well put together and well written, highly suggest a read!
Here’s my contribution, a section about gender bias in diagnosing autism:

“It took 19 years for someone to suggest that I might be on the spectrum, after years of therapy and obvious symptoms, such as meltdowns, growing up. These were labeled tantrums, and I was considered to have anger management problems. Girls are socialized differently, so if you’ve got a social disability and are being judged against criteria set up for a group of people who are trained from birth to socialize differently from you, there’s going to be a difference and people won’t pick up on it. You don’t fit their mold.”

“There’s theories out there that being autistic means I have a male brain. I don’t see how that’s possible, since I feel female and am very happy as a female. It feels kind of dismissive of my identity as a female to say that I must be male in some way to have the neurology I do.”

“For a while I was told I was possibly bipolar. This didn’t stick because I didn’t get the right sort of mood swings, but suffice to say it took a while and several bad theories before realizing that ASD fit me perfectly and explained everything.”

That’s just a small portion of the amazing autistic voices in this magazine, and I highly suggest giving it a read to support this emerging journalist! To show her you want an issue 2, show your support by voicing it on social media and liking her magazine’s twitter page (@MaskingMagazine)

issuu.com/maskingmagazine/docs/maskingmagazineissue1

 

 

If you like what you’ve read, show your support with likes, comments, and shares. If you like it so much you want more, follow me here on wordpress, on facebook at Some Girl with a Braid, and/or Twitter @AmalenaCaldwell.