Mackenzie King

ENGL 384: Section 01

Dr. Foss

28 April 2020

The Autistic Voice

Defining autism causes much debate among self-advocates and medical professionals. The Oxford English Dictionary defines autism as “a condition which has its onset in childhood and is marked by severely limited responsiveness to other persons, restricted behaviour patterns, difficulty with abstract concepts, and usually abnormal speech development” (Rodas 9). The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) gives an even more unclear definition of what it labels as “Autism Spectrum Disorder” as it gives medical professionals diagnostic criteria in the form of rigid categories. The problem with these diagnostic criteria is that autism presents itself differently among individuals. Some people with autism will show very little or no verbal communication while others may have perfect verbal skills. Many of the definitions or attempts to label autism come from sources who do not fully understand the autistic experience. Ari Ne’eman’s “Dueling Narratives: Neurotypical and Autistic Perspectives About the Autism Spectrum” and Julia Miele Rodas’ Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe demonstrate how damaging labels are continuously promoted as people with autism are placed in the background of these discussions.

Autistic writers will typically describe autism by feelings, experiences, and practices instead of through rigid categories. Then, autism is “what it feels, does, experiences, and says” (Rodas 10). This puts the autistic person at the center of the definition, not just categories of diagnostic criteria. Rodas notes that autism scholars will usually resist strict definitions of autism because no one truly knows what autism is. While autism is likely physically located in the body, there is no blood test or specific genetic marker that signifies autism. In this respect, the autistic body cannot be separated from the autistic voice. In “Dueling Narratives: Neurotypical and Autistic Perspectives About the Autism Spectrum” Ari Ne’eman states that “in a society that values equality as a means of social justice, the idea of each individual created equal is often misinterpreted as each individual created the same” (Ne’eman). Self-advocates continue to strive for support and acceptance for people with autism in society. Disability is thought of as a social construct. According to this social model of disability, the label of disability then reflects how an individual is able to function in a specific environment and is then not related to any intrinsic characteristics related to the individual. This means thant people labeled as having a disability are being defined by their relation to the rest of society, taking the ability to form an identity away from these individuals.

When it comes to discussions about autism, people with autism are generally not in the center of the discussion. Films like Autism Every Day (2006) furthers the idea that autism happens only to people surrounding the person with autism. This places all of the power for form identity in the hands of non-autistic hands and not in the individual. Lauren Thierry, the producer of this film, criticized President Bush for taking a photograph with a young man with autism who scored repeatedly during a high school football game and received a lot of media attention because of his talent. Theirry stated that this sent a message that people with autism will be okay as long as they can find a certain skill in which they can excel; however, she had also told the parents depicted in her film not to provide any type of therapy for their children or maintain their homes in the few days leading up to filming. This then promoted the idea that autistic children can be seen more as tradegies, further encouraging the notion that autistic children will fall into one of two categories: tragedies or prodigies. This is not an accurate representation of the reality of most people with autism, but films such as Thierry’s Autism Every Day are motivated by fundraising instead of accurate portrayals of living with autism (Ne’eman).

Jenny McCarthy further promoted the idea of autism as pathological with her memoir Louder Than Words (2007). In her book she portrays autism as a tragedy when her son receives his autism diagnosis. Actions she previously thought were cute soon became signs of autism and represented something she now views as tragic. Because of her high profile she became popular in autism discourse, furthering the idea of autism as pathology. The describes learning about her son’s autism by saying that all of the “things I’d thought were personality traits were in fact autism characteristics, and that was all I had. Where was my son, and how the hell did I get him out?” (McCarthy 66 qtd. Rodas 16). Again, this reaction illustates the inability to look at the individual. Jenny McCarthy’s entire view of her child is altered by his diagnosis. Her son is not trapped by his diagnosis, it is a part of his identity. When the people around someone with autism try to create a label or define who that person is based on the diagnosis, it takes that person’s voice and individuality. Autistic people, just like people who do not have autism, are able to express themselves in a variety of ways and through a variety of identities (Rodas).

The diagnostic criteria present austism as something that is categorical and easily defined, but that is not the reality for many people with autism. Autism affects people differently. These categorizations make it easier to try and place people within the label of autism, but this then takes the voice away from those individuals. Organizations, such as Autism Speaks, or films such as Lauren Thierry’s Autism Every Day continue to set the tone that autism is a condition that needs to be treated. These are not accurate representations of life for many autistic individuals and futher promote the labels given to autistic individuals from non-autistic sources who do not truly understand the autistic experience. Self-advocates are correct in their pushing to be at the center of discussions on autism, not merely placed into the background while non-autistic people place labels and make assumptions about what it means to be autistic.

Word count: 1004

I hereby declare upon my word of honor that I have neither given nor received unauthorized help on this work

Mary Lennox’s Mother:

Disappointment

How can she be mine?

I don’t see myself in her eyes.

My beauty, my spirit, my status, it

becomes lost in her dull expression.

It wasn’t supposed to be like this

for mother and her daughter.

She’s sad, she’s difficult, she’s ill,

and I can’t hide my disappointment.

I wasn’t meant for a life like this.

I was expecting a life of ease.

She requires so much attention,

And I just don’t have the patience.

I’ll find somone capable, of course,

to watch her as she grows.

She’ll have eveything a child could want

I’m sure she’ll be just fine.

George:

Protection

I had you and you had me,

we had our futures set.

But it was a dream, just a fantasy,

I’m not sure where you fit.

I love you I really do,

we’ve been partners this whole time.

But I know what’s best for you,

and you don’t know where to draw the line.

It couldn’t be like this forever,

maybe it’s better me than them.

Close your eyes and look ahead,

and I’ll relieve you from this pain.

Eva Peace:

Liberation

To my shadow of a son,

It’s time for you to go.

If you can’t live like a man,

Then you’ll die like one.

That is my last act of love.

You wouldn’t leave and

you wouldn’t grow.

My womb has no more space,

so, this is where I say goodbye.

I’ll hold you and I’ll rock you here,

I’ll let you be my child.

But then I’ll keep my tears away,

And I’ll do what must be done.

Mr. Radley:

Self-preservation

The community whispers

outside our door.

Please just stay inside

where you can’t cause us more pain.

Joanne Madsen:

Concern

Who cares for you?

Who makes sure your safe?

Who listens to your worries?

Who asks what you want?

Who will be your advocate,

when you can’t speak for yourself?

Who knows what makes you happy?

Who tells you that it’s okay to be you?

Ricky Hernandez:

Sympathy

He looks at me with those sad eyes as I hold him in this room.

Just a driver, now in charge of discipline.

I want to show them kindness, respect, consistency.

These kids don’t see that often,

But my job is to to show up when I get the call,

to constrain and remove.

One day, probably soon, I’ll leave this place,

but I find myself hesitant.

I didn’t think it would be so hard.

I didn’t expect to love them so much…

Jimmie Kenrick:

Acceptance

Just can just call me Jimmie.

You don’t have to call me mom,

you don’t have to call me anything.

We have our own rhythm,

we have a special click,

we have an understanding.

You don’t have to call me mom,

you don’t have to call me anything.

You can just call me Jimmie.

I have created poems based on the point of view of various characters from novels we have read throughout the semester. These are characters that have found themselves in some sort of caregiver position. These characters include Eva Peace from Toni Morrison’s Sula, Ricky Hernandez, Jimmie Kenrick and Joanne Madsen from Susan Nussbaum’s Good Kings, Bad Kings, Mr. Radley in Harper Lee’s To Kill a Mockingbird, Mary Lennox’s mother in Frances Hodgson Burnett’s The Secret Garden, and George from John Steinbeck’s Of Mice and Men. These characters, whether parents, paid professionals, or friends, are put into the role of having to take care of someone with a perceived disability. All of these characters were chosen to represent a range of different types of caregivers and how successful they are in fulfilling their role. The first-person narratives allow for the exploration of the motivations behind these characters’ actions and the corresponding pieces reflect the character’s motivating emotion. Eva Peace was overwhelmed as her role of a mother of a child with a mental disability. Her son did not fit the expectations she had for him and that ultimately led her to orchestrate his death. This could be comapred to George killing Lennie in the end of Of Mice and Men. George was a friend but also a protector to Lennie. Throughout the novel they say they look out for each other, but it is never truly an equal partnership. George often acts according to what he feels is best for Lennie, but perhaps sometimes his actions are for selfish reasons. This raises the question of whether or not his killing of Lennie was really to protect his friend or to relieve himself from the stress of a caregiver position. Either way, he makes the decisions about what happens in Lennie’s life. Other caregivers, such as Mr. Radley and Mary Lennox’s mother, will keep their children at a distance. Maybe they can never accept their child’s differences or maybe they are unwilling to make the necessary adjustments to their own lifestyles in order to care for their children, either keeping them locked away in the house, as Mr. Radley does, or giving the responsibility to a paid worker, as Mary Lennox’s mother does.

There are positive examples of caregivers, too. Joanne Madsen, Ricky Hernandez, and Jimmie Kendrick from Good Kings, Bad Kings all behave more appropriately in their interactions with those they care for. Joanne, while not specifically a paid caregiver in the nursing home, offers the children guidence in accepting their identities as people with disabilities. She also looks after the best interest of all of the residence of the home. She treats the children as individuals and gives them room to grow and express themselves. Ricky, while he struggles with the ethics of his job, also tries to treat the children as individuals. He cares for them on a more emotional and personal level than many of the other paid professionals in the home. Lastly, Jimmie’s personal connection with Yessenia Lopez influences her decision to become her foster parent. All of these positive representations are similar in the way that they allow the other person to be an individual, not defined solely by disability. In cases where caregivers are unsucccessful in their roles, it is because they cannot accept the individual, whether that takes the form of making decisions about what happens to that person or releasing themselves from the caregiver role altogether.

I have neither given nor received unauthorized help on this work

Word count: 564

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Mackenzie’s Final Paper

Mackenzie’s MMP. Poetry: The Motivations of a Caregiver