A Final Look At Disability Studies

Collaboration on my group project seemed to go according to plan.  From the start, Emma, Rebecca, and I agreed to work together equally and all be involved with the project’s progress.  In class, we worked to put together our proposal and discussed proper interview questions to ask.  On Sunday, all three of us took about 4 hours out of our day to help pick up and drop off people, as well as conduct the interviews.  No one was left out of anything.  Tuesday night and in class, Rebecca worked on transcribing the interviews while Emma and I cut and pasted the video together.  Everyone spent an equal amount of time on the project, and we were all very satisfied with the final product.  As we discussed in class, there were a few issues concerning collaboration with our interviewees.  We had to partially select which buddies we invited due to ride accessibility.  With the time allowed to work on this project, individuals who lived far away or couldn’t get a ride to campus were not really an option, unfortunately.  Luckily, the 5 friends we did interview did an amazing job!

All three members of our group are on the Executive Board for Best Buddies, so the first thing that came to mind when answering the question of “what is disability studies” was how we could incorporate that experience into our project.  Throughout the semester, we realized all the information on disability studies that had been presented, though we read a number of amazing articles, came from the minds of individuals in academia.  We thought that it might be interesting to hear what people with disabilities outside of the academic realm thought about disabilities, and if the messages that had reached us reverberated in their lives.  We were also interested in what they would teach a class concerning disability studies, trying to incorporate the messages of a non-published author into our classroom.  They didn’t know who Linton, Garland-Thompson, or Siebers were, but their words carried heavy meaning that added to our understanding of disability studies, and also hopefully the rest of our class.

As far as individual reflection, I can honestly say I’ve learned to look at disabilities in a completely different way over the last few months.  Before this class, I never realized the size of the disability movement, or the implications my actions might have on others with disabilities.  I now notice myself being more conscious of my vocabulary, straying from medicalizing disabilities, and staying conscious of accessibility issues.  I’ve even been able to express my knowledge of the subject to others.  I participate in research at the VA hospital, and last Friday I gave a presentation on special needs patients to my fellow research assistants.  I was able to talk about the social model of disability, medicalization, and Garland-Thomson’s visual rhetorics.  As a pre-medical neuroscience major, I don’t usually get to participate in many classes involving social justice and culture studies, but I’m so thankful I was able to this semester. Overall this class has significantly changed how I look at disabilities, and will always be one of my favorite classes at the University of Michigan.

Gender, Sexuality, and Disabilty

A heated debate in multiple communities, sexuality and gender identity remain a pair of topics surrounded by questions and uncertainty.  Personally, growing up I was never confronted with some of the issues described in Jack’s essay “Gender Copia: Feminist Rhetorical Perspectives on an Autistic Concept of Sex/Gender.”  While they most likely existed and were just invisible, excluded from the brutal walls of an un-accepting high school community, this piece has really opened my eyes to how others view gender and sexuality.

I really appreciate the way Jack has textualized the ideas surrounding sexual identity in the Autistic community.  He does so in a way that allows neurotypical readers to comprehend the emotions and distress which come with particular preferences and identities.  Quoting Meyerowitz from How Sex Changed, the author describes the cultural impact of society and how “individuals articulate their sense of self with the language and forms available to them” (Jack, 2).  This particular ideology emphasizes how gender is a sort of socially absorbed idea.  One that not everyone recognizes.

Coming to Michigan, you experience a very diverse group of people.  Much more diverse than the small, conservative town I was born and raised in at least.  My ideals about gender and sexuality changed as I interacted and intellectually discussed certain topics with my peers.  I always liked how my housemate described it, as a sort of spectrum ranging from one extreme to the other.  However, Jack argues against a continuum, but for “something more like a copia, the rhetorical term Erasmus used to describe the practice of selecting ‘certain expressions and making as many variations of them as possible’” (Jack, 3).  This opens the reader to a journey through a cascade of rhetorical identifications, mostly with an emphasis on individuals with autism, but not solely isolating them.

I specifically found the performance identification exceptionally interesting.  For performance, the idea of almost “creating” an identity seems at first somewhat baffling.  However, further introspection led me to realize that everyone does this to some extent in their lives.  I know at least for myself, I will act differently depending on who I’m around.

Finally, I feel that disability has a unique interaction with nationality.  We’ve brushed up disability culture in other countries, and a lot of the times it is not pretty.  Where you come from will significantly influence how a person with a disability not only sees the world, but also sees themselves.  If your national looks down upon you for a particular characteristic, whether it be a disability, sexuality, obesity, etc. you will probably look at yourself differently than if your country had total acceptance.

Mental Disability Culture

The past three years, I’ve been an active member in Best Buddies.  I’ve served on the executive board for two of those three years, so I hold the organization very close to my heart and have strong opinions regarding those with developmental and learning disabilities..  I feel that the most important thing to take away from disability studies is the necessity for integration in society.

Those with learning disabilities are no different than those without.  They experience the same feelings, think the same thoughts, and enjoy the same activities.  As a buddy told me one time, “We’re just like you, excess we process things a little bit slower.”  I’ve always kept that message in the back of my head.  For example, last Friday we hosted our annual Halloween Best Buddies Dance.  My buddy introduced me to his girlfriend, another girl in best buddies, whom he’d been dating for a few weeks now.  They laughed, enjoyed the games, and danced together, just like I and my girlfriend (if I had one haha) would at a dance.  He told me about his new job at the office, what his plans for the weekend were, and asked me about my week. I think that’s the most important thing Best Buddies has taught me – to accept them as equal individuals, who are not characterized by their disability.  In fact, we never find out what types of disabilities our buddies have, or discuss it with them.  Not because they don’t want us to know, but because it just is not important.

A heavy aspect of disability studies weighs on the medicilzation of the disability as a disease, which “casts human variation as deviance from the norm, as pathological condition, as deficit, and, significantly, as an individual burden and personal tragedy” (Steibers, 11).  Developmental and learning disabilities add an extra variable to fighting medicilization, because they are technically degenerative “diseases” to the brain, where something like an extra chromosome may be present in your cells (down syndrome).  While individuals with such disabilities might process information slower than someone without a mental disability, this should not be looked upon as a burden or deficit.  Through my experiences, I’ve seen individuals with developmental disorders be some of the happiest and most life-loving people I’ve ever met.

Another powerful experience I’ve encountered with Best Buddies, which I talk more about in artifact offering, is the refuse to use the “R” word campaign.  Linton discusses the negative connotation of such ridiculing words in his essay, and I feel that awareness over the need to exclude such “nasty words,” as he calls them, from our vocabulary is incredibly important.  Like the medicalization topic, such words are demeaning to those with developmental and learning disabilities, and in no way characterizes them or who they are.

The final note I want to close on is I’ve never felt out of place at a Best Buddies event.  Whether I’m embarrassingly shake my butt in a dance off competition with George (and loosing terribly) or belting along to Taylor Swift at the top of my lungs, no one will judge me.  They are entirely accepting of me, and who I truly am.  So shouldn’t I give them the same respect?

A Blog Carnival – The Social Restraints and Misunderstandings over an Autistic Community

Many undesirable restraints in society are placed over individuals with autism based on false stigmas of the autistic community which lead to false accusations, inappropriate medicilization, unnecessary exclusion, and overall unfair treatment.

Breathtaking to Behold: Talking back to Dismissal; By Amanda

Amanda discusses how minority groups hold key answers to the stereotypical nonsense questions that are thrown around to offend and oppress.  However, the author confesses she thinks that the autistic community has not yet developed to this level, where they have quick responses to inappropriate comments such as “you’re not really autistic enough.”

Just as Siebers discusses in his essay about the incorporation of disability studies into the realm of culture wars, Amanda fights for a time when individuals with autism have their own snappy comebacks to the ridiculing comments they receive from their community.  These comments not only restrain and demoralize people with autism, creating inappropriate social assumptions about who they are, but are also incredibly insulting to those receiving the comments.

Are you Autistic?; By Bev

Bev’s blog post consists of two pictures, the first titled “You are not really autistic because…” with a pie graph consisting of excuses such as “you write a blog,” “Asperger Syndrome doesn’t count,” or the biggest part being “you have the wrong opinions.”  The second picture is a skewed Venn diagram showing “People who are REALLY autistic,” according to autism advocates, pointing out the ridiculous curriculum society places over being autistic.

These pictures hold a more literal confrontation with my topic, because they depict the specific restraints society has placed on individuals with autism.  The first picture is showing the ridiculous reasons why some autistics are considered “not autistic” by autistic advocators, which not only insults them personally, but excludes them from their social cohort.  The second picture pokes fun at the outrageous, un-written criteria one must fit to be considered autistic, and shows again how society is putting restraints on who is and who is not autistic, as well as what they are able to do.

Assurant Health Denies Coverage Because Young Man is Autistic; By Doug Boude

Doug confides in his audience about the trouble he encountered trying to find health care for his entire family, and how Assurant Health immediately denied coverage over his non-verbal autistic son Joshua, despite the fact that there is no correlation between autism and physical health.

A more concrete example of the effects of societal stigmas over autistics, Doug’s situation with Assurant Health is sadly not an uncommon one.  While his son is a non-verbal autistic, this label does nothing in defining who Joshua is, what he is capable of, or the extent of his medical health.  The moderator on the phone doesn’t even take the time to ask Doug about Joshua and his disability, rather he just states Assurant Health does not cover autistic children, and asks Doug about his other children.  These types of restraints, such as being denied health care, deter those with autism from integrating fully into the community.

In the Autism Community, We’re Fond of Drawing Lines; By Emily Willingham

Emily blogs about the lines which members of the autistic community draw when it comes to societal abuse.  The author lays out specific comments or actions where enough becomes enough, and also provides her list of “lines” to advocate for a more accepting community, such as “Remember that disability does not mean ‘no ability’ and that different does not mean less.”

These lines which Emily describes in her blog post, both hers and the common lines she encounters, are often overstepped by people every day.  They symbolize and recreate the social stigmas which not only restrain those with autism in society, but also categorize them into disabled groups by medicalizing the condition.  This in turn “casts human variation as deviance from the norm, as pathological condition, as deficit, and, significantly, as an individual burden and personal tragedy” (Linton, 11).  The lines create separation between those with and those without autism, and limits those with it through society.

Neurotypical Privilege: A Working Document; By Bev

A list of privileges received solely for being neurotypical, which satirically attacks the ridiculousness of some social norms pertaining to autistic and non-neurotypical individuals.

In a sort of reverse way, Bev is pointing out the privileges which do not come with being non-neurotypical, such as having autism.  While some of these are synonymous with other posts in which society offends and groups together negatively those with autism as incapable and incompetent, other privileges point out the benefits neurotypical people receive, such as availability of health care.  Together, this lack of privileges negatively medicalizes autism and places restraints on their incorporation into society, solely based on these social stigmas and not at all on their actual abilities and characteristics.

Why “Autistics” Isn’t a Bad Word; By Emily Willingham

Another insightful post from Emily, this time she talks about the social stigma of the word “autistics,” and it’s the reason behind its acceptance while words like “retard” are considered offensive.

Drawing again on the medicalization Linton discusses in his book, Emily expresses how society has medicalized Autism “to the point that autistic people can read and hear words used to describe them that include ‘tragic,’ ‘stolen’ ‘monster,’ and ‘afflicted.’”  This obviously places a negative connotation to those with the disability, but they have fought back.  By attaching themselves to the word and using it as a representation in a positive light, the community aims to de-medicalize the term Autistics.  To create a sort of individualization as Autistics, “who have strengths and weaknesses like everyone else and a right both for their voices and words to be heard…and to choose those words themselves” (Willingham).

Autistic People: Insensitive to social reputation, sure, but what about empathy?; By Emily Willingham

Another post by Emily (Sorry, I love her writing!), revolving around a scientific study conducted claiming that individuals with autism are insensitive to social stipulations, and therefore are unable to feel empathy.  However, the author’s biased views from society create a conclusion incredibly disreputable.

First off, the entire experiment has so many holes that I’m baffled as to how it was published.  In summary, 10 “high-functioning” Autistics and 11 NT individuals bid on charity items for UNICEF, first in seclusion and later with random people watching.  The NTs bid significantly more when others were around to judge their “charitable status,” supposedly displaying the importance of their social reputation.   Those with Autism, however, showed no difference and bid the same whether others were watching or not.  The researchers claims that this neglect towards an observer stems from a lack of empathy for others, stating “it has been well established that ASD features reduced empathy.”  Personally, that’s a bunch of bull shit.  The study simply shows that the autistic participants simply donated what they felt was an appropriate sum, whether an observer was present or not.  It was the NTs who correlated their monetary amounts to what others thought of them, not their empathy towards others (UNICEF).  Most importantly, the researcher was biased on his opinions of individuals with autism, going into the study assuming they have reduced feelings of empathy because that is what society has taught him.  This caused him to specifically look for such a trend, when really none existed, and in the end he looks like a fool.

I Stand With Henry; By Amy Sequenzia

Amy offers her opinion on the “I Stand with Henry” movement, which revolves around a young boy, Henry, whose admittance into public school has been rejected, solely because he is Autistic.  The author describes the barriers to education she herself had to overcome, and is appalled that the situation hasn’t gotten any better.

Similar to the health care situation Doug encountered with his son Joshua, the public school system is refusing to allow Henry to integrate himself into the community, just because he is Autistic.  Henry has proven himself through other schoolwork and knows he has what it takes to succeed.  He even points out that, in school, he learned the Civil Rights Act of 1964 granted equal rights to all people, and he is a person, so why shouldn’t he get equal rights to public school?  As Amy points out in her discussion, these types of regulations have been around for a significant amount of time, and only create another social restraint on the Autistic Community.

(Above is a word cloud, highlighting the most common and important words used throughout my blog carnival.  The larger the word, the more often it appears throughout my writing.  Big and bold in the center of the word cloud are the words autistic, autism, society, and social, which all pertain to the theme of this blog carnival – about the social restraints and accusations placed on individuals with autism.  Other words which stand out include individuals, empathy, privileges, and stigmas.)

Refuse To Use the “R” Word

(The picture above is of an enormous white banner with a large “R” in black print in the middle of it, surrounded by a thick red circle and a diagonal line through the circle, much like a “no smoking” sign. On the rest of the white banner, inside and outside of the circle, there are countless signatures of names – hundreds, possibly thousands – written in multiple colors of ink that cover the entire banner.)

 

“Retard – to make slow; delay the development or progress of (an action, process, etc); hinder or impede” (Dictionary.com).

Does any part of that definition allure to a noun or adjective?  Absolutely not.  A verb synonymous with ‘to slow down,’ the word may be used in the sense “Joe used his brakes to retard the motion of his car.”  Nowhere in the definition does it refer to a characteristic or group of individuals, but the negative connotation society has placed on the word retard has affected and hurt not only many people in the disabled community, but the community itself.

The artifact I’ve chosen to share with the class, shown in the picture above, looks merely like a banner with names and miscellaneous scribbles on it.  However, each signature is actually a pledge to yourself and the community to not use the “R” word in a derogatory sense.  The organization I’m a part of, Best Buddies, started this campaign to “Refuse to use the ‘R’ Word.”  As part of Disabilities Awareness week last March, the executive board for Best Buddies posted up mid-Diag with an empty banner, some candy, and a mission to spread our message.  My buddy Justin, along with a few other members’ buddies, joined the cause and volunteered their time to stand outside and yell at strangers passing by to take five minutes out of their day to help make a difference.  As you can see, we were more than successful.

Language is a strong weapon.  It’s a double edged sword because not only does it hurt the individual, but it also affects a group’s identity in society.  Using the term “retard” to describe those with intellectual and developmental disorders places them into an ideological group of deficiency and shortcomings; something every member of Best Buddies can prove is not true.  Linton comments on this idea in his section on ‘Nasty Words,’ talking about how cripple “inadequately and inaccurately describes the group,” and that words like this are “understood to be offensive and hurtful, (yet) they are still used in jokes and in informal conversation” (Linton, 16-17).

In our readings, we’ve discussed the lack of knowledge pertaining to disabilities awareness and the ignorance many people demonstrate over this topic of discussion.  However, people with disabilities are often left out in the rain, rejected from the social justice umbrella striving to defend the rights of everyone else.  For example, today I was talking to my friend and she referred to someone as “looking at me like I was retarded.”  I was a bit surprised, hearing this out of a social activist’s mouth.  This same girl fights for women’s equal rights, scolds people for using “gay” derogatorily, and I have even seen her slap someone for muttering the word “faggot,” yet retard flew out of her mouth so easily.  Siebers discusses in his essay the parallelism between disability studies and the culture wars, and argues that it should be “a significiant register in the many and various disputes that have come to be known as the ‘culture wars’ (Siebers, 1).  Just as the equal rights movements of minorities, gays, transsexuals, and many other groups have forced their way into the spotlight for change, the disabled community also deserves this same attention and consciousness.

Caption Fail

Over 114 million people have enjoyed the crazy antics of David after his dentist appointment, still feeling the effects of knock-out gas.  The young 7-year old entertains viewers for about 2 minutes with funny sayings, random outbursts, and other insightful thoughts.  Unfortunately, those hard of hearing have not had the same experience.

Six seconds into the video, the subtitles are already wrong.  So someone only watching the video and reading the subtitles starts off already confused, and it only gets worse from there.  Plain, white, and small text, the entire appearance of the words draws away from the comedic, absurd atmosphere typically provided between the voices of David and his father.  It fails to capture the obvious “highness” of his voice and keeps the audience at a distance from the characters.

The picture below depicts David releasing a tantrum scream, commonly agreed on as the most comedic part of the video.  The youngster begins moving around, to which his dad says “stay in your seat,” as seen in the subtitles present.  However David ignores his father’s wishes, grips his booster seat with all his might, and launches himself up with a blood-curdling scream that persists for about five seconds.  He then falls back down in his chair, seemingly passed out.  With sound, the sudden outburst is quite hilarious, and definitely takes the audience by surprise.  However, there is no indication of any scream in the subtitles, and besides the estranged look on David’s face, the whole sequence of events just looks like he’s stretching, yawning, and collapsing back to sleep in his chair.  The subtitles fail to capture the raw absurdity of the moment, and definitely leave no comedic essence to the fifteen second interval.  Had I not known what was going on, watching with just subtitles I would probably just be confused and wonder why David was making such a silly face.

David After Dentists is not some silly home video that received 300 views and no one has heard of.  This particular Youtube video has been featured all over the media, on TV shows, and seen on over 100 million computer screens.  Yet no one has made a successful attempt at captioning either the correct words or correct atmosphere of the video so that people hard of hearing can enjoy the same experience.  This is incredibly troubling, and I feel intervention from someone is necessary.

(The picture above is a screenshot of Youtube video titled “David After Dentist” at 0:57/1:59, with 114,119,311 views. The scene is the backseat  of a car, where only a little boy sits, strapped in by a seat belt. He is clenching the seat with his hands, outstretching his arms, and lifting himself off the seat while protruding his face in a distinguishable scream. The caption on the Youtube video reads “stay in your seat.”)

 

Becoming Visible

                Brueggeman’s article struck me as not only an incredible woman’s life story, but also a very eye opening experience.  The fact that so many individuals hide their disability from the public eye never actually crossed my mind.  This idea forced me to re-look at the people in my life, wondering who might be just like Brueggeman and experiencing a similar situation.  In all honestly, the piece made me feel ashamed that I’ve always just assumed my peers to be completely able persons.  The fact that the kid I sit next to in Biochemistry might be hiding an auditory or visual disability and struggling just to take notes is quite humbling, and makes me feel bad for all the distractions my friends and I cause during lecture.

                The discussion over “coming out” was very powerful to me as well.  One of my good friends is homosexual, and had a similar experience with his “coming out” freshman year.  The similarities were striking and thought provoking because I never made such a powerful connection between the two.  I witnessed some of the difficulties he had to go through, and can only imagine Brueggeman must have struggled through similar difficulties.  I also found similarities between his “passing” in the heterosexual community prior to the coming out and Brueggeman’s “passing” as a non-disabled person.

                Based on the readings provided, I feel that the meaning of “to pass” implies a person with a disability shielding his or her disability from the public eye, integrating into a non-disabled culture.  As Montgomery comments, it’s when you look at someone with a disability and say “’I can’t see what barriers she faces’” (Montgomery).  The author also comments about how this means their disability is their problem to deal with and overcome, because no one else can notice it.  I agree that this is unfair, and that even the “invisibly disabled” deserve the same rights and accessibility that others in the disabled community have.  Finally, by encouraging others, whether they’re friends, peers, or a complete stranger, to pick between passing or overcoming their disability, I feel that you are taking away their freedom as an individual to cope with it not only how they want, but in the way best fit for them.   

Introductions and Defining Disability

                Hello! I’m Josh Gatz, a junior here at the University of Michigan studying Neuroscience with future aspirations of medical school and becoming a psychiatrist or emergency room doctor.  My interests in disability studies stem a lot from my involvement on the executive board in the campus group Best Buddies.  This is an organization where each member is paired with a peer from the surrounding community with learning or developmental disabilities and focuses on forming one on one friendships through weekly communication and monthly activities.  The group also focuses on raising disability awareness in the community here on campus.  Besides Best Buddies, I’m also involved in the University of Michigan Tae-Kwon-Do team, a sport I’ve done since I was 8 years old, and the triathlon team.  My goals for this class include developing a better understanding of what disability studies really is, and learning how I can do my part as an advocate of the disabled community.

                I felt the reading for today focused a lot on overcoming the social construct restricting individuals with disabilities.  I especially appreciated the Barbie Doll Model, which gives a strong overview of how different aspects of the society we live in have created their own definition or idea about disabilities – and more importantly how these labels discriminate against those with disabilities.  On page 11, Linton brushes on this topic and how the term disability should not be used as identification.  I feel that this idea is critical in overcoming discrimination, because this sort of labeling limits someone with a disability to a single role and fixates on solving the problem of their disability rather than integration into society.

                Linton puts a lot of emphasis on the importance of vocabulary and the power word choice has on the social implications of what you say.  She warns of simplifying the group down to a single name, and the connotation certain words like “cripple” and “overcoming a disability” have.  Shakespeare’s description of the social model provides a more practical version of defining disability, one that is actually in existence.  He fails to elaborate much on the “normalcy” discussion, but Linton talks about how this dichotomy where one depends on the other creates absolute categories that place people with disabilities in a separate group, furthering the discrimination between those with and without disabilities.

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