Blog Post #5

“My name is Anna and I’m 9. My best friend is my sister, Natalie, even though we fight almost every single day. My other best friend is Sammy, my iguana. Sammy and me never fight, but mom says a sister is a forever friend, so I guess that means Natalie is more my best friend than Sammy. Natalie is almost a teenager. She always yells at me for leaving my bug collection in her room because she hates bugs. Natalie thinks it’s dumb that I want to be an entomologist, which is a scientist who studies bugs, which is what I want to be when I grow up. Mom says don’t feel bad because teenagers think everything is dumb. Mom also said don’t feel bad when we picked out Sammy at the pet shop. A tall guy there with a beard was yelling when I let some of the lizards out of their cages. I really just wanted to see what kind of bugs they were eating but I didn’t get a chance to tell him that because he already kicked me and mom out of the store. Natalie just rolled her eyes when we told her what happened. I think Natalie is secretly jealous of me and mom sometimes, but mom says teenagers always get jealous. I think Natalie is lucky to have me as a sister because even though she gets jealous and hates my bugs, I still let her be my best friend because we are sisters and sisters are forever friends.”

This assignment was honestly pretty challenging. The only thing I knew for sure was that I wanted to make a female character, just because they’re so underrepresented in the autism community. I tried to follow Bard’s suggestion of not making it so obvious right away that my character is autistic, or different from any “normal” 9-year-old. I also wanted to encompass what I think might happen in a family who has a sibling with autism, and how that autistic sibling might view the situation as opposed to thinking that he or she is the “problem”. A mother or father overcompensating to make their autistic child feel better, such as not yelling at them for letting lizards out of a cage at a pet shop, is something that I think parents of autistic children might often struggle with. I also liked the idea of having a pet as a loyal companion, similar to Christopher’s “Toby,” which is why I created Sammy for Anna. If I had more time or space to develop the character of Anna, I might elaborate more on her social situations outside of home – at school, on the playground, etc. Overall, I wanted to create a character who is fairly happy regardless of the situation (like Christopher), because even though autism certainly presents challenges at times, I don’t think that it prevents happiness entirely if one can learn to live with it.

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Blog Carnival: The “R-Word”

This blog carnival features various opinions and perspectives about the increasing misuses of the word “retard”, especially in the autism community.

“The R-word. I get it now.” written by a mother of an autistic son: http://autismandoughtisms.wordpress.com/2011/06/02/the-r-word-i-get-it-now/

“Please lose the word ‘retard’ from your vocabulary” written by a father of three autistic sons: http://lostandtired.com/2011/04/28/please-lose-the-word-retard-from-your-vocabulary/

“Why ‘Retard’ is a Hate Crime” written by a physically disabled blogger: http://nostereotypeshere.blogspot.com/

“Mental Retardation” written by a mother of a son who is autistic and mentally retarded: http://www.joysautismblog.com/?p=82

“Is ‘Autistic’ the New ‘Retard’?” written by a blogger on the autism spectrum: http://www.autisable.com/719975060/is-autistic-the-new-retard/

“Take it from Glee’s Sue Sylvester: ‘Retard’ is Not Acceptable” written by a mother of a son with autism: http://www.squidalicious.com/2011/05/take-it-from-glees-sue-sylvester-retard.html

“Autism: Not the ‘R’ word again…” written by a mother of three sons, one of whom is autistic: http://blog.friendshipcircle.org/2010/08/23/autism-not-the-r-word-again/

“The R-Word is not acceptable” written by a father of two boys, one with autism and one without: http://www.stuartduncan.name/special-needs/the-r-word-is-not-acceptable/

“Retard” written by the mother of a daughter with a neuro-genetic disorder called Angelman Syndrome: http://ourhummingbird.blogspot.com/search/label/the%20r-word

“Retarded” written by a mother of a son with autism: http://www.autismwonderland.com/2011/09/retarded.html

“Retard” is a word that is becoming more prominent in everyday language, spoken and written by people of all ages, sexes, professions, and social statuses. Technically, the term is supposed to mean “a person with delayed development,” however, it has become so much more than that. A woman whose son had been diagnosed with both mental retardation and autism writes about how she did not want him to have the diagnosis of mental retardation because she “didn’t want that label on him,” even though it would give her son eligibility for extra financial benefits. However, she notes that mental retardation’s synonym “developmentally delayed” does not bother her at all. So what’s up with this “R-word”?

One blogger features a PSA video saying that the R-word is just like any other minority slur word, such as “nigger,” “fag,” and “spick,” which are heard much less in public because they are so frowned upon. But the R-word, on the otherhand, is often used very freely as an insult, sometimes as a joke and other times not. Another parent of a special needs child was worried that she might be being hypersensitive about the R-word, especially because people use it so light-heartedly. However, she decides that the problem is that when it’s used as an insult, it is being aimed at “all aimed at able-minded and able-bodied people, comparing their idiocy to those who are not.” Basically, it’d be like making fun of someone who can’t walk, while you can walk. It’s an unfair comparison.

Another issue with the R-word is when people use it to identify or characterize a person with autism, when technically, not all autistics are mentally retarded. Often, people with autism actually have very high I.Q.s, so to say they are retarded just doesn’t make any sense. A father of three autistic boys feels that calling an autistic child “special” or referred to as having autism isn’t a big deal, but that the word “retard” is degrading, ignorant, and dehumanizing. It’s also inaccurate. The R-word not only negatively affects people who are disabled  but also those indirectly affected by disability.  Another parent had to pick up her crying son early from elementary school one day after his friends were calling his autistic brother “a retard.” In another blog the upset sister of a boy with autism holds up note cards with all the awful ways in which people have actually defined “retarded” on the popular site, Urbandictionary.com.

Other than emotionally damaging children and families affected by autism (or other disabilities),  there are even greater effects of the R-word in society. A blogger on the autism spectrum says that the word “autistic” is becoming the new “retard.” She says that perhaps because autism awareness has increased so much, it has become mainstream enough that people are turning the word “autistic” as means of insulting one another, usually as a joke. Further, the R-word has caused a negative stigma about any person in society who has special needs, whether they are autistic, actually mentally retarded, or have some other disability. One blogger posts about how robbery, sexual assaults, physical assaults, and even murders are occurring because people have come to think so badly of the disabled and specifically target them. The R-word is also spreading dramatically, even into other cultures. Living in a bilingual city in which French is the most widely spoken language, a blogger explains how our slang and derogatory terms often become a regular part of the French’s vocabulary. He compares it to teens in high school who throw around the “latest trendy verbiage or insults.” Sadly, “retard” has become one of these trendy words.

Although I wish it were otherwise, I can’t say I’m not guilty of using the R-word as a slang term while talking with my friends. But like the solution that most of these blogs have suggested, I am actively trying to stop using it, and also correct others when they say it. I’ve found that every time I hear someone say something like “I’m so retarded” or “Stop being a retard,” it stands out to me like a sore thumb, whereas in the past it would have just blended with the other words around it. All in all, everyone needs to realize just how much the R-word can seriously affect others, whether they are disabled or not. Just because you declare something a joke doesn’t suddenly make a cruel word or remark magically acceptable. And as the mother of an autistic child puts it, it certainly “doesn’t give you the authority to decide whether the person your “joke” is making fun of should be offended or not.”

I created this image to represent how the words “autism” and “retard” have become so connected with one another. All of the colored words are different feelings, descriptions, and results of the misuse of the R-word. On the left, the only word going in the same direction and in the same color as “autism” and “retard” is the word “why?” The point I’m hoping to make is that there is absolutely no reason that someone has to use the R-word, and that all of these colored thoughts, feelings, and negative results can be avoided if we simply stop using it. If this will save the hurt and possibly even lives of other people, why not?

Blog Post #4 – Autistic Adults & Representation

Robertson’s article focuses on how autism is depicted as a deficit rather than a form of human diversity. He calls looking through the lens of human diversity the “neurodiversity perspective,” which is influenced by societal diversity in other areas such as religion, gender, sexual orientation, and ethnicity. This perspective also supports the emphasis of the strengths and talents of autistic individuals rather than the things that they tend to have trouble with. Robertson discusses eight “Core Domains of Quality of Life” and what we can do to enhance these for people with autism, seeing that we live in a society designed for non-autistic individuals that very well “contributes to, and exacerbates, many of the daily living challenges that autistic people experience.”

I agree with Robertson that a collaborative approach is necessary in order to do this, in which there are partnerships formed with autistic people who have directly experienced these situations and the best ways to navigate them. Who better to explain and promote change than those who have put up with these challenges? And as sad as it is, many autistic adults no longer have their parents fighting for them, and in society parents are often the fuel for the fire when it comes to innovation. The same goes for media and literature about autism. I think the absence of autistic adults in media and literature also often results from the focus on stories and issues involving children simply in order to generate a bigger and broader audience: parents, families, teachers, health professionals, and so on. Let’s be honest – who doesn’t care about the well-being of innocent children? Adults, on the other hand, become invisible, unless they are those “high-functioning” and/or “Aspergian” autistic adults, such as Amanda Baggs, who can also attract an audience.

I found this commerical about Autism Awareness, ignoring autistic adults: http://www.youtube.com/watch?v=y7t3daKTQMg

This commercial introduces autism as a complex neurological disorder that affects a child for the rest of his or her life. That is the closest it comes to addressing adulthood – the rest of the commercial shows groups of cute children in black and white, and rambles off facts and numbers about autistic children. It ends by saying that we need to “do something” about autism, and having each child say individually, “for me!” – “for me!” – “for me!” and so on.  The message here seems to be that we need to “do everything we can” about autism for these autistic children, leaving out the sake of adults who are affected by the same exact “disorder.” There are no facts or numbers mentioned about adults, or how autism can affect these children once they reach adulthood.

All in all, I think Robertson is right – there needs to be a shift of focus by research and professional communities, starting with the study of the quality of life for autistic adults in order to create resources that would ultimately give adults with autism more respect, support, interaction, and hopefully, happiness.

Blog Post #3

To me, one of the most interesting points that Bard’s video makes is how in Goldilock Rhetoric, language and communication have such a heavy influence on determining the ways in which NTs view and categorize individuals. Usually, if a person is non-verbal, people assume that the lack of activity in their speech corresponds directly to the amount of activity in their minds. Bard points out that while a non-verbal autistic person cannot speak in our language, they can still be quite intelligent (i.e. Amanda Baggs) and very well might be able to do things that verbal autistic individuals and NT’s cannot. Bard is right in saying that many non-verbal autists probably have intelligence comparable to Amanda Baggs’s, even though their intelligence is not accounted for just because they cannot communicate the same way as the rest of us. Further, a verbal autistic individual may have trouble doing certain simple tasks, such as laundry or using a pencil, that may not be so visible to the public eye as speech. I can see why Bard feels upset about NTs trying to compare the two, just as a result of NTs’ tendency to correlate spoken language and intelligence so directly with one another.

Honestly, Bard’s list of 9 things NTs shouldn’t do kind of intimidated me at first. After reading each, I immediately asked myself if I had ever done any of these things when communicating with a special needs person. But, I will say the list really made me switch my perspective when thinking about how a person with any sort of special needs might feel when interacting with an NT. No person wants to feel pitied, corrected, inadequate, or ignored. Savarese’s article reminded me of the importance of trying to put yourself in the other person’s shoes when communicating with them; it would be so awful to feel such entrapment by your physical responses just from the anxiousness or nervousness of having someone speak to you. It was especially thought-provoking that Savarese had to deliberately greet children indirectly, just to keep from getting too excited and energetic. Usually, being excited and energetic is a good thing — it’s hard to imagine purposely holding these responses back.

All in all, no matter what an NT does, they won’t fully understand what the world looks or feels like to a person on any part of the autism spectrum. Nor does a person on the autism spectrum know what it’s like to be an NT, or what it’s like to be in the shoes of any other autistic individual. Life is not a “who has it worse” or “who understands it better” competition. We’ve all been given unique perspectives, and when interacting, we should do our best to be patient, genuine, and show respect to one another.