nluciano

Nathalie Navia-Luciano’s Final Paper

Nathalie Navia-Luciano

Professor Foss

ENGL 384

May 4, 2021

Parents and Their Autistic Children: The Mourning Over A Perceived Normalness

When a parent is welcoming a child into the world, it is a moment of excitement and joy. There is no doubt that in the many month-long wait, time is filled with the parent imagining who and what the child would be like and what they will become. Their favorite colors, foods, dream jobs. When expecting children, a parent can imagine the life that child will have in the following years. In many cases, parents will be blessed with the delivery of a child that could be considered “normal” or neurotypical. While in others, parents will be blessed with a child that has a disability. Unfortunately, some parents may not consider a child with a disability as a blessing. They may not recognize the child as their own. They may mourn the “normal child” that they had felt they were supposed to have.The child that was supposed to go to school, learn to drive, and go off to college. Not that disabled children cannot grow up to do all these things, however there are some who are dependent on the care of others who may be unable to partake in much of the activities that can be perceived as typical to any lifestyle. An example of this challenge is a parent who is coming to the knowledge that their child is autistic. In Sinclair’s article the preconceived notions of burden that are placed on caring for a disabled child morphs the view that parents have toward their autistic child and in turn can affect the child and the support that they may receive from their parents in the long run. This occurs in both the misunderstanding that autism can be cured or removed from the child and that it would be impossible to speak and relate to them.

Previously, I noted that a challenge may present itself once a parent learns that their child is disabled, in this case autistic. With an ableist lens the challenge could be perceived as one that only belongs to the parent when it in fact also resides in the child themselves. Jim Sinclair discussed in their article, “Don’t Mourn for Us” the issues that lie in parents mourning their autistic child and how this belief is rooted in the preconceived notion of burden and loss. Sinclair uses solid statements that expose the heartlessness of a parent that puts how they feel over the child. Viewing this occurrence as a “great tragedy” in their family (Sinclair). Sinclair chastises parents in for their behavior toward their autistic children. Demanding that parents do not mourn for their children. One point that they brought out under their subheading “Autism is not an appendage” was that since autism is a way of being, there is no removing or separating it from an individual. In reference to the parent’s wish for a “normal child,” they revealed the true meaning behind the phrase, “I wish my child did not have autism (Sinclair)” that a parent may say toward their child. They brought out that this is in fact a way of expressing that the parents wished that their autistic child did not exist, and a normal child may take their place. This heartbreaking notion of being unable to love a child because of the difficulty that presents itself in learning and understanding an autistic child is a representation of how an unsupportive parent allows the illusion of burden to build a wall between themselves and their child. All of this over a shattered expectation of normal (Sinclair).

Parent’s may also perceive their children as an “impenetrable wall (Sinclair).” This is certainly not the case. The root of this belief is also found within the expectations that a parent may have already conceived with their child that the language that they would use with a normal child would also be understood as well with an autistic child. However, an autistic child is not going to respond in a manner that is recognized as being a part of that language system (Sinclair). Sinclair highlights that “it takes more work to communicate with someone whose native language isn’t the same as yours (Sinclair).” This illustration further emphasizes that autistic individuals are “foreigners” in every society that they live within (Sinclair). A real effort will need to be made if a parent wants to support their child and better get to know and understand them. They would have to become fluent in their language and translate and make sure that an understanding can be made. Even then Sinclair admonishes that even once this is accomplished there will be no normal parent-child relationship. A whole new construction of normal would be required in order to accept the different. If the new construction is not built Sinclair warns that frustration, resentment, and even hatred can stem from a parent toward their child.

The care of an autistic child is dependent on the parent understanding that any traditional, societal notions of “normal” do not apply. To mourn an autistic child is to not accept them for who they are. It is to wish and pray for a replacement child that is easier to swallow and handle in association. It is not impossible to communicate and get closer to an autistic child. It requires effort to learn and understand the language system that the child uses. The preconceived notions of burden that are placed on caring for a disabled child morphs the view that parents have toward their autistic children and in turn can affect the child and the support that they may receive from their parents in the long run. However, Sinclair advised that approaching “respectively, without preconceptions, and with openness to learning new things, and [the parent] will find a world [that] could never have imagined (Sinclair).” This remedycreates the opportunity. Don’t mourn an autistic child. Instead, explore who they are and what they will be (Sinclair).

Works Cited

Foust, Rebecca. “Apologies to my OB-GYN.” Margie (2007): Electronic Ed.

Sinclair, Jim. “Don’t Mourn for Us.” Our Voice (1993): Electronic Ed.

I pledge – Nathalie Navia Luciano

Word Count – 1034

Nathalie Navia-Luciano’s Major Paper/Project

Major-PaperProject-ENGL-384 Download

Have a good night everyone!

Breakout Room Discussion 4/15

Bryce, Alaina, Lily, Faith, Nathalie

Focusing on Ashkenazy

Alania- I did enjoy the beginning where she was talking about how her skin color allowed her to blend into different cultures which is not something that a lot of people are able to do.

Bryce- Yeah, she’s multi-racial so she has many features that allows her to blend in wherever she goes. Sor of being how she mentioned that that is when she feels the most accepted or welcomed into a group. She can just walk in anywhere and people would assume that that is where she is supposed to be. On the flipside of that being autistic there is a bit of a barrier for her. There’s a sort of dichogamy between the two

Alania- With autism and other disabilities you are immediately others but with being multicultural she is both and insider and an outsider

Bryce- I thought that the part where she was talking about the microaggressions where she mentioned – people would look at her and say why are you doing that and that makes it difficult but not really which is sort of pervasive or it spans into her disability. When people say “oh I have this” they use that and all their preconceived notions about it and say this is how you’re supposed to be this

Faith- Yeah, I really liked that part. I hate stereotypes that people may have toward others. I dislike that so much and it definitely doesn’t help that the media

It gets me confused when people claim to have something, and they get it from just one trait from the disorder

Alania- It’s like people take the simplest things from stereotypes to feel validated.

Bryce- It almost waters down peoples’ actually lived experiences. The people who actually have it aren’t being taken seriously since its lost its importance.

Faith- Yeah, I like that phrase since it represents the struggle-

Alania- One of the things that stood out to me is that people with autism and who are also people of color have to follow the strict roles that society has set out for them

Bryce- Yeah like in those communities having mental disabilities can be a source of shame for the person and for their family – I think she talked about how having to act a certain way and if your autistic and you’re not picking up on norms than you’re expected to pick up on the norms others pose you’re considered strange because you’re not understanding what people expect you to know

Alania- A lot of what gets me is that people who seek a diagnosis is not believed because they do not match the stereotypes – male dominated autism

Scribe: Nathalie L

Room (?) Discussion

Karlie, Alaina, Daniella, and Nathalie

Karlie: It’s a fast read for me, the chapters are short, and the characters are interesting for me.

Alania: I want to crawl through the book and protect Mia.

Karlie: I got so pissed at that chapter with Mia.

Alania: I understand some healthcare facilities are not the best but that is just not okay.

Karlie: I think he is going to get caught.

Alania: How old is Mia again?

Karlie: I think she is seventeen.

Alaina: Then she is still a minor – If he was an adult he could get into real trouble and get locked up.

Karlie: Well I mean Jerry is way older than what I thought.

Foss: Jerry is one of the workers.

Karlie: Yeah, that scene left a really bad taste in my mouth.

Alania: Yeah, and I feel bad for teddy since he has no clue what’s going on.

Karlie: It’s sad that she is going through something so traumatic, and she hasn’t told anyone so no one can help her.

Alaina: – (I missed it. I’m sorry!!!)

Karlie: that scene in the book when he takes the bungee cord and spins her around is so sweet and cute.

Alania: Yeah, it is.

-I missed a little-

Alania: And the way that they talked about the lawsuits really gives the impression that they don’t care.

Karlie: I think it’s interesting that the main guy tom is going away and having vacations while others are trying to figure out ways to solve problems and the financial issues with the center. It’s like the center is a blip on their spectrum which is a shame because they obviously need more help with things.

Karlie: I hope Mia gets her justice.

Alania: I know she’s a fictional character, but I hope this isn’t based on a real story. Either way they all have their own backstories. The trauma Mia is going through is definitely real.

Karlie: What are your thoughts on Michelle?

-cue silence-

Karlie: My thoughts alone I can’t tell if she’s a good person doing bad things or if she is just a bad person doing her job.

Alania: I think she might have moments where she is a good person but… she can have the right thoughts, but she just dopes them the wrong way.

Karlie: That is fair, but I don’t know. She’s a bit of a confusing character for me. She’s money hungry and her character is almost spiteful about things.

Alania: I see that. She just seems like such a flat character now. She neither good nor bad.

Karlie: She’s very one dimensional.

Alania: I did enjoy the moment when the title was mentioned in the dialog.

Karlie: Yeah, I love it when that happens in books and movies.

Nathalie was the scribe.

Nathalie Luciano’s Response to Tobin Siebers’ “Disability in Theory”

In Tobin Siebers’, “Disability in Theory” the concepts of social constructionism, the new realism of the body, and the presented challenge of representation are discussed. A struggle to understand or even accept the realities of the disabled body and how it should be represented is a present and ongoing issue in today’s society. Disabled bodies often change the process of representation due to the fact that different bodies require new modes of representation. Therefore, though there are many methods and theories in which to craft an image of the body, both social constructionism, the body theory of pain, and the idea of realism all present challenges in crafting an accurate representation of the disabled body.

Social constructionism attempts to define disability through environments that may be hostile to some bodies in comparison to others. Social constructionism can be broken into two ideas: weak and strong construction. The weak construction being that the society’s attitude influences the perception of bodies. Thus, advancing a “commonsense” approach that people may victimize those who are different from them. The strong construction, on the other hand, does not rely on merely the attitudes of society. Rather, it relies on a “linguistic model that describes representation itself as a primary ideological force (Siebers 174).” Therefore, the body itself doesn’t determine its own representation. Scholars insist though, that this social construction either fails to acknowledge the difficult physical realities faced by people with disabilities or it presents their bodies in ways that are conventional, conformist, and unrecognizable to them (Siebers 175).

Pain is a subjective phenomenon, thus making it a tempting way to see it as a way of describing individuality. This can be troublesome because individuality is a social object and because “both medical science and rehabilitation represent the pain of the disabled body as individual, which has also had dire consequences for the political struggles of people with disabilities (Siebers 176).” Pain in body theory is rarely physical pain. Rather it is pain that is created by society and based on guilt or social repression. The pain of disability is much less bearable in this sense because people with disabilities suffer intolerance and loneliness every day because the able-bodied refuse to accept them as part of the human community (Siebers 177). Therefore, the challenge of managing the body’s pain is faced on a regular basis.

The idea of realism is another difficult method to put together. Art works concerning disability or art that is created by artists with disabilities do not hesitate to represent “the rough edges and blunt angles” of the disabled body in a matter-of-fact way (Siebers 179). Their methods are deliberate, as if they are trying to get people to see what is right in front of them but is somehow still invisible to most. Siebers quotes Wade and how she brought out the reality of disability in her passage concerning those who need care, and risk paying for it with their independence and personal self-esteem. “Crudely put,” Siebers writes, “unless all adults have their ass wiped by someone else, unless the caregiver cannot wipe [their] own ass, the people who alone require this service will be represented as weak or inferior (Siebers 179).” Thus, emphasizing the struggle that the disabled may have to maintain a portion of equality with their caregivers.

Though these theories present different modes in which to understand the disabled body, an accurate representation of a disabled person is not cookie-cutter and is instead individual to that person alone.

I pledge… Nathalie Luciano

2/23/21 Breakout Room Notes NRNL

Group 2 – Arden, Nat, Alania, Daniella, and Faith

Faith– I like the whole thing with Amy Mollens. I thought that was neat since I haven’t seen much representation of people with disabilities in magazines. You think you would see more of those things, but I really haven’t. I’m not sure what the holdup is.

Arden– Yeah, I don’t know either. Because there are movements, but you don’t really hear about them

Faith– Yeah you only hear about them when they’re an Olympian or something.

Arden– Yeah you usually only hear something when someone has don’t something fantastic or horrible. I feel that only bad stuff is fed to the public in comparison.

Alania– I feel it’s the bad stuff in the media that creates a bad light on the disabled.

Arden– It was really interesting that disability and feminism was tied together. When you read about it, they do have similar problems

Alania– What did you think of the combination? There’s a quote from 260. What’s your opinion on that?

Faith– I’ve never really heard of feminist disability movement.

Arden– They’re two different things

Alania– Yeah, but they go hand in hand

Arden– Yeah that’s the whole thing with identity since there is not just one thing that you identify with. There’s more to a person.

Alaina– The way that I have thought about it is that they want the disability to be more visible but not all consuming. “It’s a part of me, but it’s not all that I am. I am my race, culture, and whatever gender I identify as.” Its can be dehumanizing when you focus on only one thing about a person and disregard the rest.

Faith– Its either all about the disability or its completely hidden.

Arden– It’s hard to find the grey area.

Faith– Disability has no link to a person’s sexuality.

Arden– There is a part of the article where those who are disabled are asexually objectified.

Notes taken by Nat.