Month: October 2021

Camp and Politics

turtleLeave a comment

Crip Camp is a very insightful and informational documentary. I think this movie should be seen by students for multiple reasons, a large one being the understanding of activism. Activism is the taking of action, specifically in a political or social setting. The film highlights the ins and outs of a disability activist group and how they went about advocating and fighting for their rights and the changes they wanted to see in the world. I think this is important because all of their actions as a group were nonviolent. They relied on sit-ins, hunger strikes, and information to change the minds of politicians and citizens in America. Not only that, but the film also shows how different groups of people come together for common causes. To support and learn from each other, an example of this is the Black Panthers group providing meals for the disabled who were protesting inside a political building for over twenty days, “A broad array of nondisabled ally groups supported the twenty-five-day occupation by disability activists of the HEW regional headquarters in San Francisco.” (23).

I think this is important for students to learn because it not only gives them the inspiration to fight for what they believe is right in a nonviolent way but how to advocate and help the community around them in order to improve the lives of others. The film shows a sense of community and comradery throughout the film that is a valuable thing for a child to learn and understand, find happiness in a community, relate to others, and be able to learn from them. I think this documentary will also teach high school students about disability and what it is to be disabled. It’s an accurate representation of the experience of those with disabilities and widens children’s minds to how to incorporate them into their lives, to look at their peers and the people in their community as people first, not defined by their disability the way society often phrases it.

A Major Proposal Monster

DellFrog2 Comments
  1. Title: The “Monster” Within: An Analysis of Disability as “Monstrous” in Literature
  2. Central Question: In early literature, monsters or monstrous figures were often caricatures of disability. These caricatures led to generalizations of disability that when replicated led to widespread misunderstandings of how disability is experienced and perceived. How did early literature characterize disability and what are the modern repercussions?
  3. Product Design: I will be creating the beginnings of a thesis essay, estimating 15-20 pages of research and analysis of literary works and modern interpretations. Many of the literary works will come as a result of the analysis portions, provided by the Disability Studies Quarterly journal and academic essays published by universities.
  4. Production Plan: This product will be a result of hours of research and culminating analysis which will have to be done over a long stretch of time. I plan to meet with the professor on either the 10th or the 17th to present initial findings and the general structure of the essay. The work-in-progress will hopefully be the second or third draft of the thesis, with only minor adjustments and citations to be added.

Proposed Schedule:

November Week 1: Outline and First Draft of Sources

November Week 2: First Draft of Content -perfect citations

November Week 3: Second Draft of Content: After meeting with professor and finalizing Chicago Style sources at the RWS

November Week 4: Third Draft and Final Edits

  1. Consultation: I will hopefully be in contact during several points of the essay, but mostly using the professor as a touchstone of major ideas. I tend to get carried away with either too much research or too much analysis, so getting feedback on whether I am finding a good balance will be helpful. This will likely come after the first draft of the essay.

Special Questions: Thinking of formatting of research and analysis, I think that it is best to go via topic vs. via source (ie: multiple sources on the topic of mobile disability vs. analyzing Shakespeare, then Hugo, then Wordsworth, etc.) Would this be preferable for an academic paper? Is it considered too “passe” if my “modern perceptions of disability” look at how Disney has taken literary stereotypes and morphed them further? Or should I just be looking at how the stereotypes are repeated in modern literature?

  1. Citations: I have about 20 gathered right now, not that I will use all of them. But these are some I have come across.

Mary Shelley’s Frankenstein, Disability, and the Injustice of Misrecognition https://dsq-sds.org/article/view/7109

Aesthetic Traces in Unlikely Places: Re-visioning the Freak in 19th-Century American Photography https://dsq-sds.org/article/view/613 

Disabling Imagery and the Media: An Exploration of the Principles for Media Representations of Disabled People https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/Barnes-disabling-imagery.pdf 

Disabled Literature—Disabled Individuals in American Literature: Reflecting Culture(s) https://scholarspace.manoa.hawaii.edu/bitstream/10125/58432/1/574.pdf 

Project Proposal

turtleLeave a comment
  1. Title
    1. My central question Is what is the effect of becoming disabled as a child as a result of war and what that does to their mental state. The proposed product is a creative piece about these children’s lives and experiences.
  2. Central Question
    1. I’m trying to understand and put my feet into the shoes of the people my age in my country that have become disabled due to standing up for their rights and independence. I want to understand what this does to their mentality.
  3. Product Design
    1. This project is going to look like a creative non-fiction piece that forces readers to connect and learn about what it is like to be a child with a disability due to war. It will be influenced by my experience as a Palestinian woman and the research I have done for this project.
    2. I think the structure will come to me as I research, it is going to have a lot of my personal thoughts and feelings influencing the piece and so I think I’m just going to write and see what comes out and go from there.
    3. I really want to explore the mentality here. I want to know how exactly it feels to be a disabled child as a victim of war, and then to be targeted because of that disability. I want to know what it does to know the medical attention that you need, you’ll never get. I want to see what it does to know you can be permanently scarred for standing up for your right to survive.
  4. Production Plan
    1. I’m going to start by researching, then write everything I feel and want to say out before editing and organizing it into a coherent creative piece. (I know this isn’t super planned out but my creative pieces work best when they aren’t.
  5. Consultation
    1. I think it would be the most helpful to meet with Andrew towards the end of my project when I have the working pieces and I am trying to sort my thoughts out. I want input and perspective on my writing and its effectiveness for the reader.
  6. Citations
    1. http://humanityjournal.org/issue11-3/a-deep-and-ongoing-dive-into-the-brutal-humanism-that-undergirds-liberalism-an-interview-with-jasbir-k-puar/
    2. https://www.unicef.org/mena/press-releases/no-end-sight-seven-years-war-syria-children-disabilities-risk-exclusion
    3. https://www.middleeasteye.net/news/gaza-palestine-israel-war-disability-children-school

Major Project Proposal

Tuesday1 Comment

Tentative title:

“Wardrobe of Masks”– a visual for the interaction of passing and masquerading in relation to identity and society

Central Issue:

How do different societal interactions affect one’s expression of identity? My Exploration will mainly focus on the impact outside perspectives have on personal expression when it comes to disability intersecting another minority status. In particular, I plan to investigate potential reasons for changes and hierarchy in performances.

Product Design:

Drawing inspiration from Tobin Seibers’ “Disability as Masquerade”, the product will be a literal mask. This is partially to evoke the idea of masking, a term referring to passing in the Nuerodivergent spheres, and to directly reference what Seibers refers to as ‘Masquerade’. The mask will have three to four layers, each layer representing a different community and the fictional mask wearer’s performance of identity in that community. Underneath all the masks, though still in the works, the mask wearer’s actual face will be represented by sculpted creature. I am reserving the right to change how the core person is represented. To help enrich the different masks, I plan to reference quite a few chapters from Visibility Disability in each layer. At the moment, I am still deciding on my other major sources for the overall final product. These sources will probably impact how I display the masks. They also might impact the dialog which I plan to write to represent interactions between the masks.

I also think it will be fun to play with an idea that people change up their performance like clothes depending on the situation. This may result in the masks being stored in a box made to look like a wardrobe or closet. This will probably be where the dialogs will be displayed.

Production Plan:

Week 1(11/1-11/7): Gather materials, finalize main sources.

Week 2(11/8-11/14): Start constructing the masks, and draft the thematic dialog, meet with Andrew to review project so far.

Week 3(11/15-11/21): Finish constructing the bases of the masks, have completed drafts of all dialog.

Week 4(11/22-11/28): review dialog drafts (other people besides myself), start adding the finishing touches to each mask.

Week 5(11/29-12/5): add final details, complete any last minute changes.

Consultation:

Ideally, the meeting would be in the earlier stages of the project, before a structure has been fully committed to. The Masks will take some effort to make and there will point where I cannot make any changes to a layer without remaking the whole layer. Ideally I would like to meet on November 10th as I will probably have not started making the masks, but will have completed the bulk of my research. I would like to know if there are any other sources on passing or similar to the readings we have done by Dolmage. I think readings more focused on general themes rhetoric surrounding disability would work well in informing the dialogs’ structure and content.

Citations:

Kuppers, Petra. “performance”, Keywords for Disability Studies.  Edited by Adams, R., Serlin, D., & Serlin, D. H. (2015). NYU Press.

O’Toole, Corbett Joan. “Celebrating Crip Bodyminds” Fading Scars: My Queer Disability History, 1st ed., Autonomous Press, June 9th, 2015, pp.13-53

Dolmage, Jay. Disability Rhetoric. First edition., Syracuse University Press, 2014(. Pp.93-125)

Disability Visibility: First-Person Stories From The Twenty-First Century, edited by Alice Wong, Vintage, June30th, 2020.

Don’t Mourn For Us – Jim Sinclair – RAB Response

Djellibeybi2 Comments

Summary:

“Don’t Mourn For Us” by Jim Sinclair, was an article that was published in the Autism Network International Newsletter, Our Voice, Volume 1, Number 3, 1993. The article was original presented as a speech at the 1993 International Conference on Autism in Toronto. The primary audience for the article are the parents of those with Autism, particularly, those parents who have just found out their child or children have autism. The points Sinclair makes in the article are as follows: 1. Autism is not an appendage – it is not something that the child can shrug off like a piece of clothing, but an essential part of their character. Removing the autism from the child would fundamentally change who that child is. 2. Autism is not an impenetrable wall – children with autism have difficulty connecting to people without autism, and visa versa, but if you give a concerted effort to understand your child with autism, they may let you in, in time. 3. Autism is not death – the autistic child is what the parent’s got. They can grieve for “their dreams” of a child just like them, and except that they will have to connect with the child they have, someone who – in sinclair’s words – is an alien in a strange land, and the parents’ job is to represent the child to the normal world.

Notable Quotes:

“This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.” Pg. 1

“Some amount of grief is natural as parents adjust to the fact that an even and a relationship they’ve been looking forward to isn’t going to materialize. But this grief over a fantasized normal child needs to be separated from the parents’ perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity.” Pg. 1

“Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings.” Pg. 2

“You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence.” Pg. 3

Reflections:

I can understand the feeling of these parents and what the author, Jim Sinclair, is trying to communicate. I have a brother with high-functioning autism. Though he can talk and communicate and is physically capable, he has the mental aptitude of a young child, so he needs constant surveillance and care to ensure he doesn’t get into trouble. I have had those feelings where I wished he wasn’t autistic and that I didn’t have to worry about what he would get into or where he’d run off to when I’m not looking. But I do love my brother and I have to admit that my brother would not be the same without that part of his character, even though I may find it annoying or troublesome, I can’t think of him in any other way.

Don’t Mourn for Them, Learn for Them

unsureunderwaterobot5 Comments

Don’t Mourn for Us // Jim Sinclair

Summary:

Don’t Mourn for Us is an essay written by Jim Sinclair about the complexities of birthing and raising an autistic child. The author explores the processing period for parents who have autistic children; they break down the misconceptions and reframe thinking from mourning, to learning. Autism is described as foreign-ing. By this, I mean that autism is not a dismissible characteristic, but rather a way of being outside of our preconceived notion of “normal”. Sinclair gives tips as to how to refashion perspectives in a way that honors autism.

Quotes/Analysis: 

“I urge parents to make radical changes in their perceptions of what autism means” (Sinclair pg. 2).

I believe this quote gets to the heart of the essay. This is what the author is requesting. 

“Autism isn’t something a person has, or a “shell” that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, very aspect of existence. It is not possible to separate the autism from the person, and if it were possible, the person you’d have left would not be the same person you started with” (Sinclair pg. 2). 

I believe this quote is why the author feels so strongly about training parents of autistic children. This quote explains the true meaning of autism, which is often misunderstood and then poorly approached. 

“Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you” (Sinclair pg. 4).

This quote is part of the authors recommendations for moving forward. 

Reflection: 

There are aspects of the language used that made me uncomfortable, but maybe that’t the reality of having an autistic child? I was surprised the way the author closed with a scenario of an alien child, referring to them as “it”. But overall I think this was a very insightful read. I think it would/will take so much unlearning to think in the way the author is recommending. The framework they are coming from is so foreign for so many people, but it is worth sharing. 

The Philosopher’s Dilemma: Why Different Bodyminds Deserve The Right To Live

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Summary: 

In the piece, “Unspeakable Conversations” author Harriet McBryde Johnson recounts her experience with meeting infamous philosopher and professor at Princeton University, Peter Singer. Johnson is a disabled rights activist a part of the organization Not Dead Yet and lives with a neuromuscular disease herself. Familiar with his ideologies relating to infanticide and mirroring beliefs in modern-day eugenics, Johnson was intrigued yet reluctant to meet Singer. Their first interaction is intriguing because Johnson sees some of her own peers chatting with Singer, the man that believes anyone with a disability should not be born/be able to live. They get introduced and suddenly start exchanging emails for a while until Johnson is invited to speak at his university to a group of students with a follow-up Q and A. Upon arrival Johnson notes the attentive audience nodding along to the illogical, quite frankly horrid arguments Singer presents to them. He is professional, respectful, and calm. When Johnson speaks, she adds more of a personal touch while keeping the same professionalism. Afterwards, the two end up going on a walk as they also say their goodbyes and it seems Johnson’s opinion of his character has changed a bit. The chapter closes with thoughts running through Johnson’s head about Singer, about how ignorant people can be when it comes to disability in general. She feels content with concluding that Singer is extremely misguided but truly believes he is doing something helpful. She cannot hate him or violently argue because the world is filled with Singer’s unfortunately, but she was able to make some important dialogue with him that could alter others’ minds.  

Quotes: 

“But I have trouble with basing life-and-death decisions on market considerations when the market is structured by prejudice” (Pg. 10) 

“Within the strange limits of this strange assignment, it seems Singer is doing all he can to make me comfortable” (Pg. 18) 

“If I define Singer’s kind of disability prejudice as an ultimate evil, and him as a monster, then I must so define all who believe disabled lives are inherently worse off or that a life without a certain kind of consciousness lacks value.” (Pg. 26) 

Reflection: 

This reading wasn’t one of my favorites, but I think the writing got away from me towards the end. The theme that stuck out to me the most and seemed one of the most important was the power of rhetoric here. Since Singer had a professional, calm tone about him he would/will always have an attentive audience. Not to mention his status as a professor and famous philosopher. Singer has the privilege of painting his atrocious beliefs as something admirable because not only does he believe he is coming up with a real solution, but his status and demeanor demand interest and respect. If Johnson or anyone with Not Dead Yet were to speak out against Singer in a “aggressive” way that would be completely rational, an audience would see it as irrational depleting the other sides view immediately. Johnson knew for that reason she must remain calm but still added her personal touches in and also was professional. As we are all aware, many people similar to Singer exist in our world and they exist through their usage of rhetoric.  

Sinclair, Jim. “Don’t Mourn for Us”

TuesdayLeave a comment

Summary:

Sinclair begins by addressing the way Autism is typically viewed, as a tragedy. This is how Sinclair sets up the scene for the rest of xyr message. Sinclair focuses upon the fact that many parents view and treat autism as an illness that is hindering their child from being ‘normal’.  This is not the case. Autism is part of their child and by mourning the child’s condition, the parents are alienating their child. Sinclair argues that it is the parents’ treatment of the child that prevents them from connecting and bonding with them. It is the parents inhibiting the relationship. Having a child is not something parents typically expect but it is something they need to be willing to work with. This is their child, still. Sinclair closes xyr letter by inviting the reader, parents of autistic children, to accept, support and join in their children’s life,

“I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.” Pp.1

“You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence.” Pp.3

“But I know it’s a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it.” Pp.4

Reflection:

This will be fairly short. I do not much to say about Sinclair’s writings, except xe is right. I think what was said in Don’t Mourn for Us goes for all parents. You should never enter parenthood expecting your child to be just like you. They are a person. They will have different opinions, likes, dislikes, and way of thinking, their own personality. They are all ‘alien’. Autistic children are not that different from non-autistic children, they all need to be supported and guided by parents who accept them for who they are. I think I would personally change the audience of this letter to include the autistic child’s peers, because at the end of the day we are not just raised by our parents.

Adults ruin a lot of things…this is one of them.

To Grieving Parents: “Don’t Mourn for Us”

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“Don’t Mourn for Us” by Jim Sinclair

Sinclair begins their letter to parents by calling out the “trauma” that parents feel upon receiving a diagnosis that their child is autistic. They define autism as a way of being, and wishing for your child to not be autistic is akin to wishing for a different child. Then they talk about parents learning a new way to communicate with their children that is often outside of their expectations. Sinclair then talks about the grieving process that parents go through upon diagnosis, relating the grieving not to the loss of their child to autism, but the loss of their dreams of a neurotypical child. They tell parents instead of being sad at their child’s condition, they should be sad about the world that fights against their existence. Sinclair ends the letter with telling parents to look at their children and assist them in the world around them, help them where they can and fight for better living conditions for people with autism.

Quotes:

“What it comes down to is that you expected something that was tremendously important to you, and you
looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it–
and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to
hasn’t happened. It isn’t going to happen. No matter how many other, normal children you have, nothing will
change the fact that this time, the child you waited and hoped and planned and dreamed for didn’t arrive” (4).

“This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t
know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents
of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it.
And because this alien child happened to drop into my life, that job is mine if I want it” (4-5)

Analysis:

Sinclair is clearly responding to the immense amount of parents who exaggerate the grief over their child with autism, the ones who champion for cures or attend autism support groups because their “lives were ruined by autism”. It seems to me that they drafted this letter as a response to those parents, and to new parents, to let them know that while their grief is real, autism is not a death sentence nor an impenetrable wall. Here they are speaking specifically to parents of children with autism, with the hopes of giving them insight to the autistic experience of their exaggerated grief. Sinclair is speaking within the realm of someone with autism, someone who has worked within the autism community, and someone who likely has been the recipient of this exaggerated grief.

Thinking about this article, I think that they do a great job at calling out parents for their traumatizing behavior, saying that the “trauma” that parents experience for their kids is valid, but they have to be careful not to re-traumatize their own children with their grief. Part of why I am so adamant that they are speaking to exaggerating parents is the heavy emphasis that they put on the idea that the “normal” child never arrived. In the following quote, Sinclair discusses that the parents have a loss of a dream child that they could relate to and that would understand them fully.

“What it comes down to is that you expected something that was tremendously important to you, and you
looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it–
and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to
hasn’t happened. It isn’t going to happen. No matter how many other, normal children you have, nothing will
change the fact that this time, the child you waited and hoped and planned and dreamed for didn’t arrive” (4).

Parents, with reasonable expectations of the birth of their child, should have a level of expecting their child to be different in some way. I know that in my family’s experience, my sister and her husband were fully of the mind that no matter what child resulted from the pregnancy, there would be happiness and joy at the life that they could provide for the child. We talked about the prospect for disability with my nephew, and are still watching as he grows to see what kind of child he will be. But regardless, he is their dream child because he is *theirs*.

That is to say that I do take issue with the following quote toward the end of the letter.

“This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t
know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents
of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it.
And because this alien child happened to drop into my life, that job is mine if I want it” (4-5).

I take issue with this quote because Sinclair is equating children with autism to aliens who just “land in (your) life by accident”. While yes, some pregnancies can be accidents, my nephew included, it is very clear that you are having a child. The child who is born to you is not an accident, regardless of however they experience life. I know that Sinclair was trying to make the point that for a parent, the way that their child will learn and experience the world will be foreign to them, but to me alien provides connotations of “unknowable”. And saying that you don’t know who the child *is*? They’re your child, plain and simple. Sure we don’t know what they will become, but that is true of every child. On top of this, I do not agree with calling a child, autistic or not, with the marker of “it”. Color me from flashbacks of reading “A Child Called It”, but if you must, at the very least name the child with “they/them” pronouns.

Perhaps I just have strong feelings towards parenting and the raising of children, but I definitely struggle to empathize with parents who see their own child as “other” or “alien”. Do you have to adapt to a whole new learning style on behalf of your child? Yes, but a similar notion can be said of every child.

Away from my parenting rant, I do think that this letter would be helpful to parents with children who are autistic. I think it is a validation of their feelings of loss, but also a call to action to not project their grief onto their child. It certainly sends a powerful message that doesn’t use flowery language to distort its purpose.

Philosophy and Ethics Debates are Once Again Disturbing Me

Isabelle S1 Comment

Harriet McBryde Johnson details in her story her meeting and eventual debate with Professor Peter Singer, who believes that disabled infants are not people and thus it should be legal for parents to kill their disabled child. Johnson, who is notably known for being a disability rights activist, who has congenital neuromuscular disease and occupies a motorized wheelchair, debated Singer and others with similar beliefs, and gave a full account of her meetings, emails and debate with Singer.  

One thing that I think captured my discomfort with this reading was when Johnson explained, “We should not make disabled lives subject of debate”(Johnson 11). I agree with her here, there is something sort of disturbing seeing in an academic setting the blatant disregard for empathy and emotion in some of these arguments. The urge for Singer’s perspective to become completely devoid of emotion and human contact – an impossible feat. As if distancing itself from compassion and delving solely into “facts” (which doesn’t equate to truth but that’s an entirely different discussion to be had) reveals an objective truth that defies the boundaries of morality altogether in its purity. YUCK! This seems to mostly come from nondisabled people in this story, where the distance between a person and “them” (being disabled people) is distinct, it seems to make the argument easier for them to have. The author here is much more patient here than I am, but I’m young and impressionable and quick to judge. It’s hard to appreciate the nuance that I know is there in these arguments when the topic of debate is — once again, like so many other seemingly pointless debates —  on who deserves to live and who deserves to die.

I must say however, that I am absolutely in love with this author’s voice. I can’t quite put my finger on why; maybe it’s because she’s a lawyer, maybe because she’s disabled, maybe because this is her story and she’s told it a hundred times over, but I really want to read more of her work after reading this! I love how she included so many details about the complexity of this situation, the people she’s aligned herself with and opposes, the debate and the trip she took to get there, every part of it is so captivating. I in particular love how she introduced Singer as, “The man who wants me dead”(Johnson 3). This sort of concise language is really refreshing, and her voice is so soothing and easy for me to read.