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Karibu Kenya!

Welcome to Kenya! Mambo! Jambo! Habari! 

Finally, here it is. My Kenyan not-your-average-study-abroad blog. I have finally been able to access steady internet in my hostel, after a long fight with the IT people and the finance office, who’s sense of time is nothing that I am used to. 

NOTE ON KENYAN TIME: Sort of like Michigan time, but it can range anywhere from ten minutes to an hour, or even longer. Basically nobody really makes plans in advance–and when they do it is kosher to show up very very late, or even not at all. Professors sometimes don’t even come to class, and it is normal to see some students stroll into class about 10 minutes before the class is over. It’s “hakuna matata” attitude at its finest–everyone is pretty relaxed and at ease, and things will get done simply when they get done. So…that’s why this blog is coming a little late. But hey..it’s here right?

 

Last Post!

 Image

This is the cover of Us Weekly from a few years ago.

The first thing I noticed about this image was the diction used in order to describe autism. The words “saved” “beating autism” and “recovered” are three of the critical words we learned to stray from when describing the progress of the disorder. Modern science has not found a “cure” for autism, so the word carries a negative and surreal connotation–which is unhealthy for the autism community. By viewing images like these, parents may come into the wrong mindset–and rather than loving and accepting their child with autism, they will continue to see it as something wrong with them and look for a cure as Jenny McCarthy did.

 

The second thing I noticed in the image was the use of Jenny McCarthy as a spokesperson. After taking this class and doing research on her claims with autism, the image of her frustrates me. She has created and perpetuated a counterproductive argument in the autism fight by insisting that vaccines cause autism.

If I were to view this article cover before this class, I might have even looked up to her. Knowing nothing about autism, I might have thought that this woman was some kind of miracle worker who found the cure, finally, for autism. After taking the class, I know what a detriment she has become, and I hope to spread that message so that these images do not create more of a negative impact than they already have.

Authoring Autism

The books “The Curious Incident of the Dog in the Nighttime”, “The Speed of Darkness”, “Reasonable People”, and “Songs of the Gorilla Nation” all surround the topic of autism and use character representations to exemplify people with autism. However, each book does so in a different way– and follows a different set of stereotypes. I think that in reading one book alone, someone would have less benefit than our class did when we read them all together. I also think that, as a reader, I am able to recognize the sets of stereotypes because my reading was aided with intensive study and discussion about the matter in class. I feel that if I were not applying and discussing the different trends of stereotypes that I saw in the books, I might be more apt to believe them as true. I think that these books very well have the possibility to create and perpetuate certain stereotypes about people with autism. For example, someone who just reads “Reasonable People” might assume from the severe negativity  of DJ’s parental treatment was the cause of his autism, therefore leading to the belief of the “cold mother” idea as a form of causality for autism spectrum disorders.

I would recommend “The Curious Incident of the Dog in the Nighttime” is definitely a must-read. I believe it is important as a young-adult novel because it introduces autism spectrum disorders to a younger audience, which I believe is crucial to encourage acceptance to future generations.

The Cure

I believe that in terms of autism and autistic research, the term “cure” is unnecessary and misleading. Although it is understood within the community to carry a multitude of meanings and personalized outcomes, it also creates unrealistic and insensitive expectations for a return to “normalcy” rather than an acceptance and understanding of autism as an diversity in the human form. Using a word like “cure” automatically denotes the disorder as a detestable disease.

While there are several areas on the spectrum where an autist might fall, the movement along the spectrum is relatively rare. Even when an autist does improve in areas like speech or personal contact, it does not mean that they are fully “cured” in the sense that their brain has reverted to a neuro-typical pattern. Those who fight for a cure may be fighting an impossible battle, and in fighting, they are simultaneously hurting the people they are trying to help. Pushing to cure someone with autism immediately makes them think that there is something horribly wrong with them–which could mentally harm them more than the actual neurological disorder.

I disagree with the idea of a “cure” in an autism debate. Perhaps the idea of a cure is what needs to be changed.

A letter from me to my daughter

Dear Ryanne,

You’re only 5 years old, and you have been to the doctors more than most children ever have to go. And I can tell you why. Me.

I have failed you, I would not listen to the doctors the first, second, or third time around. I cried in their offices–I begged them to look for something more. To give a new word to your “strange” behavior. To tell me it would get better, YOU would get better. But see that is the problem here…better implies that there is something wrong in the first place. So here it is out on the table, for you to read when you are older and so that you see how much I resent myself so that maybe you won’t resent me.

Ryanne, there is nothing wrong with you. Forget what people tell you, what you might read, what you might hear. You are perfect, you are wonderful. You are my playful, beautiful, 5 year old girl. And we can make it through your episodes, and we will cross every bridge together. I will always hold your hand through the hard times, or even just hold your finger like you let me do. My goal is to make you happy with who you are, and if that means fighting for my whole life, so be it.

I love you,

Mom

 

This was much much harder to write than the self-representation post. I am not sure why, but I was more nervous to portray someone who is neuro-typical with a son or daughter that is on the spectrum. I feel like it is easier to offend people when trying to portray an experience which could likely be you and an experience that could indefinitely not be you (parent of autist vs. autist)

 

 

This I believe. An Autism Credo.

I believe in voice in the midst of silence.
I believe in today.

I believe in music, healing, and passion.
I believe in Christy Diachenco, who embodies all three.

I believe in the underdog.
I believe in courage, in acceptance, and in incorporation.
I believe in discussion beyond awareness, understanding beyond stereotypes, education beyond books.
I believe in opportunity for autism, in the strength of families and parents of autists.
I believe in the potential for the children, teens, and adults affected by autism today, tomorrow, and always.

I believe in neurodiversity.

Meet Abbey

“ABBEY. ABBEY. ABBEY.” Mom is screaming at me. I am hiding. I am sure she does not know where I am. I am thinking about screaming back.
“AAAAHHHHBEEEEEEEEYYY.” I am thinking about answering.

“AHHHHHHHHHH WHAT”
“I SAID COME HERE”
“WHAAAAAAT?”
I can hear her, but I pretend that I can’t. Mom is mad. She is scary and mean and I am hiding. She will not find me. 5 more minutes on the computer.

“Abbey, is there a reason why you’re not answering me? Stop covering your ears with your hands.” Mom is mad.

“Stop” I tell her. “I want to watch a video on Youtube. Two more minutes mom.”
“It’s time to go, Abbey, no more videos today. I have an appointment in 15 minutes. Stop covering your ears, please.”

I am not going to the appointment with her. I don’t want to go.
“One more minute.” I point at the computer to show her the little cats on the screen. “They are cute. The kitties.”
Mom pulls on my arm.
“NOOOOOOO. NO NO NO.”

“Calm down, Abbey.”
I am calm. She is mad and I am calm. I want to look at the kitties and not at her and her face and I am not going to the appointment.
Mom walks out of the computer lab. click, click, click. Bye, mom.

The concern that I have with writing this brief introduction is that I am not sure what level of the spectrum my character is. When I started writing about her, I had my best friend’s little sister in mind, Sarina. When I was at their house, it was always a constant battle between her and her mom, and I felt as though there was no escape from constant screaming. My character, Abbey, is slightly younger than Sarina–I decided to make her about 9. Abbey is stuck in her head a little bit, and if I were to develop the story more, it would include less dialogue and more mental processes.

“Infantilizing Autism”- what’s it all about

in·fan·til·ize: to reduce to an infantile state or position. So what does it mean to infantilize something like autism?

The face of autism is a child’s face. Adults who have autism are strangely underrepresented in the media, and therefore seem to be left in the shadows.

No grown adult likes to be treated like a child. So what comes of these hidden adult faces of autism? In the article “Infantilizing Autism”, by  Stevenson et al., she explores the representation of autism by looking at four domains: the chapters of The Autism Society of America, charitable organizations, popular media (books/movies), and news articles. In all four domains, the researchers found that discourse on autism was child centered, which contributes to a popular understanding of Autism with a infantilized identity.  The research also found that the only adults represented on the websites (less than 5%), were parent perspectives rather than autistic perspectives.

It was interesting to look at the research and information that supported the underrepresentation of adult autists in the media and public sphere. It made me aware of the possible effects that the media, news, and websites have on my perception of different issues beyond autism, and what types of things can be twisted and warped through seemingly harmless images that takes prevalence with an issue. It is something that I will definitly keep in mind.

Response to Bard

Bard’s v-blog was not exactly what I had expected. I read the “How to be an Ally Not a Jerk” post before watching it, and I realized that I already made a pre-conceived judgement just from the text. Immediately after reading the post, I felt as though I had done many things wrong, not only in cases with autistic people. but with all disabled people in general. I felt that the writing was accusatory and angry, and did not give a clear suggestion on how to improve behavior, rather than to not do certain things. It seemed like it was asking people to just leave autistic people alone.

However, after watching his video post, I feel almost like I could connect with him. He reminds me of my good friend (which I’m sure he would not be happy to hear me say-since he expressed he does not like to be compared) but I mean it as a genuine compliment. Something that struck me was when he was describing how his boyfriend treats him, and how much he appreciates when people admit that they do not understand him but simply have a desire to help. I am going to post on his comments: “What do you suggest is the most humble and least intrusive way to help?” He gives a lot of advice on what not to do, but I would like advice on what action is possible to take. He really is quite poetic.

“If you want to be an ally, be aware of your privilege be ware of the gaps, don’t ignore them. Encourage our voices, and make them stand out in the chorus of opposition and hate.” -Bard 

Blog Carnival Notes

My blog carnival topic is Autism in Poetry and Creative Writing

The blogosphere is important to autism communities because it allows them to express themselves anonymously and establish an identity separate from their diagnosis. It also promotes a conversation about issues instead of giving just a one sided argument. The web has revolutionized these discussions and allowed for readers to get access more information about autism from sources from real, average people like themselves.

I have come to the conclusion that my particular topic, poetry, is particularly important in the conversation about autism. The poems that I found were by and about autistic people, and covered a variety of topics from parenting to romantic love. The important lesson to learn about autism in poetry is that it can not only be a topic of art but the people who are diagnosed with autism can express their feelings about it freely and artistically. There isn’t a specified conversation topic that recurs in the poetry, but rather makes an underlying statement that whether or not someone has autism does not make a difference in art, and can add a whole new perspective.

If I were to make this carnival public, I would want the outside world to see what I saw as I was exploring the different blogs.

“One way I like to define myself living with autism is that I’m closed on the outside, and open on the inside. I may come across as not listening or paying attention, but trust me, I am.” -Russell Lehmann