‘Crip Camp’ Could Be a Class Success!

(Author’s Note: None of the 62 chapters from Keywords are titled “Law”, so I chose Chapter 52, “Rights”, by Maya Sabatello, because I’m guessing that’s what the professor meant. It’s the closest, anyway.)

Hey You, Teacher,

If it were implemented in your Social Studies II class curriculum this semester, I think Crip Camp (2020)—yes, that Oscar-nominated, Sundance premiere documentary that was produced by the Obamas—would be of substantial educational value in teaching the full history of the American civil rights movement to your classroom. 

First, let me offer that the disabled position in America remains largely unacknowledged in our humanities classrooms. The significant piece of American history covered in Crip Camp is retold colorfully by the leading rights activists for Disabled in Action, including Jim LeBrecht, Judith Heumann, Corbett O’Toole, Ann Cupolo Freeman, and Denise Sherer-Jacobsen, ALL of whom are accomplished authors in the field of disability studies as well—which is something to provide extra material for your potential unit on disability rights. It’s a fast-paced documentary about the fight for American civil rights, filmed from the ground floor of the sit-ins and the sidewalks of the protests.

The documentary follows the above cast during their youth at the disability-centered “Woodstock” (Ann Freeman) which brought them together and shaped their confidence—straight on through their fight to get Act 504 signed, a critical piece of civil rights legislation which was first vetoed by Nixon (quote: “it would be just impossible in terms of cost”), but later weakened and delayed under Secretary Joseph Califano, with all attempts to enforce the act abandoned by Reagan in a horrendously bigotted effort to deprive the largest minority group in the country of their rights to protection from discrimination in federally funded public spaces (and in organizations and businesses nationwide). Because the fight still continues, your classrooms, were they to include Crip Camp in their curriculums, might notice one term continually appearing—rights. But the fight for disability justice does not only include these adoptions into law, like Act 504. Rights is more complicated than that; which is almost exactly the message of Crip Camp going into today’s world. Perhaps it would allow your students to expand their perspectives on discrimination, society’s attitudes, and law.

Maya Sabatello’s chapter “Rights” from Keywords for Disability Studies offers that “basing disability claims for justice merely in terms of legal rights, without a concept of moral rights, is inadequate”, because if the legal rights were boiled down to their core, it would be exposed how “Traditional Western liberal theory assumes that rights are private, individualized, and autonomous”. Contrary to this, the interest of disability activists, including those in Crip Camp, has always been on “group rights”, which “focus on collectives that have shared interests and aim at protecting cultures, ways of life and practices that are presumably not sufficiently protected by the assertion of individual interests” (page 159). So, as Crip Camp’s core activists (along with machinist unions, Black Panthers and supporters) persist through three weeks of hunger striking, months of government sit-ins, and a generation of “really serious, radical action” (Jimmy LeBrecht), they fight for their rights in the law, but also for their rights to exist together as an identity without friction or hardship. Sometimes this can be as plain as the right to not be “sidelined” (Judy Heumann) in a public space with your presence, but other times these rights are less obvious to the nondisabled, like the right to privacy. As one Camp Jened camper, Nick, put it: “I think what Nancy is talking about is that everyone in their life sometimes wants to be alone. I think that’s one of the major rights.” The story really only begins with Act 504, but Crip Camp teaches students to fight for the full extent of their rights, the way Sabatello describes.

 So, Sabatello’s understanding of legal rights and group rights, together, helps encapsulate Disability in Action’s goals and expectations for the implementation of Act 504. And although the world has come a long way from the incomprehensible atrocity of the institution-era, you may still be tempted to avoid showcasing this film to your classroom because of its graphic depictions of abuse in institutions like Willowbrook—I urge you not to. Though uncomfortable for students, that scene provides additional understanding of the stakes of this fight for civil rights by the disabled in America. It was not very long ago.

Of the above reasoning, might I add—aren’t these EXACTLY the kinds of topics you’d want to use to stimulate class discussion? What does Social Studies in American classrooms concern at its heart, if not the rights and freedoms of the country? As the famous clause “all men are created equal” has taken nearly 250 years to prove effected, much of that catch-up is contained already in your Social Studies curricula—and here is one more opportunity for learning. The relevance in humanities classrooms is abundant, across the board, but this is magnified by the under-evaluation of the disabled position in history as a minority group. As Corbett O’Toole said in Crip Camp, “There are moments when history shifts”. This film is an artful reliving of one of the most important ones of the last century. I hope that your Social Studies curriculum this year does not overlook a highly educational piece of American literature which could be supplemental to your classroom’s emergent concept of rights and freedoms.

Sincerely, 

Clover

A Future High-School Teacher

Clover’s Major Project Proposal for ENG401

“Text to Speech: An Annotated Selection of Autistic Poetry”

My aim for this project is to explore the poetic work of autistic poets, synthesize and catalogue their texts by larger themes and concepts, and provide some biography for each author in the context of my selections. I will include my own bookbinding, illustrations and print for the final anthology, though it may be published digitally as well. I will also include a foreword/afterword in which I break down some of the larger literary themes (e.g. the inner world, communication, etc.) I have observed in autistic poetry, explain why I chose each poem as representative of its category, and perhaps tie back to some of our earlier readings on disability studies. The current title I chose because one of my largest themes thus far in researching autistic poetry is ‘translation’, but that may change.

2) Central Question 

What are the rhetorical and literary parameters of an “autistic” genre of poetry? What themes occur often? What are the common style elements (e.g.  free verse, first person), and where is most poetry being produced (at an academic or personal level)? What effect does this have on the literature, and why is that important? I’ll also be looking for the rhetorical boundaries of autistic poetry that I’ve noticed in my research.

3) Product Design

Product: A hand-bound, hand-curated and illustrated annotated anthology of autistic poetry.

Design: Poems will be categorized into sections by observed thematic elements, ranked by frequency (perhaps this could manifest as section headers, i.e. ‘Communication’). Each section will have an introduction with the results of my research in it. Each poem will have an artwork to the left of it, and a rhetorical analysis and biography on the back of the right page where it sits. All my images will be drawn without reference from the imagery of the poem I am working on. This will be a variety of media; fabric arts, collage, painting, etc. So, the final product will be very multimedia. I plan to do between 20-50 poems.

4) Production Plan

How will you go about creating this product? What are the steps you have in mind? The big dates to keep in mind:

  • From November 1st to November 8th, I will be gathering poems, observing trends, categorizing poetry I find and making my selections for the anthology.
  • I’ll share what I find with Andrew so he can give me some pointers during conferencing between November 8th and 19th, and in this time I will begin to bind my blank book and afterwards I will begin to block sections and draft thumbnails of my art ideas for each poem.
  • Between November 19th and 29th, I will be drawing, painting, printing, etc. I will show Andrew my biographies, artwork, and analyses to see what he thinks. I’m a poetry student so this is very familiar to me by now, though; I’m mostly looking to streamline and do my final curations of the project’s material.
  • From December 1st through 8th, I will finish my introduction, conclusion, and section headers to paste in the book.
  • I will present the product before December 8th.

5) Consultation

  • I would prefer to meet with Andrew early on in the process, around November 5th or so, so I can get his opinion on my identification of genre parameters, and what I’m observing across gross categories.
  • I would also like to meet with Andrew midway through, for some help with rhetorical analysis of the poetry and including relevant biographical detail. Perhaps I can give some details of my introductory and concluding portions here to make sure that I’m staying on track.
  • Besides that, I feel as prepared as I could be at this point!

6) Citations

  1. https://the-art-of-autism.com/the-art-of-autisms-third-annual-art-poems-for-peace-initiative/ 

“The Art of Autism”’s annual Poems for Peace, a selection of art and poetry by autistic youth and adults. This is an excellent source to draw from.

  1. https://www.autism.org.uk/advice-and-guidance/the-spectrum/poems

The “National Autistic Society”’s autstic poets’ digital library. Again, very impressive library, most of what I need to begin my search is here.

  1. https://www.goodreads.com/en/book/show/44776034-stim

The GoodReads page for Lizzie-Huxley Jones’ Stim: An Autism Anthology, which I have ordered. Not sure exactly what will be in the book, but it can’t hurt.

Major Project Proposal: The Beauty of Disabled Gods

  1. Title:
    Disabled Gods of the Modern Age
    Why aren’t there more disabled gods in mythologies around the globe? Why are many of the ones who do exist disabled because of violence committed against them? I propose a series of paintings featuring possible new disabled gods fit to be worshipped by the modern person who values the disabled community and the power of the people within it.

  2. Central Question:
    Through this series of paintings, I want to explore how disabled people are represented in various religious traditions by features some well known ones including Greek god Hephaestus, Egyptian god Bes, and the Hindu god Aruna. However to supplement these existing gods, I will make up gods of all races, sexualities, genders, sizes, ages, and disabilities. Through working on this project I hope to better understand how media representation influences our culture’s view on disabled people, taking care to make their godly domains and powers influenced by their relationships with their disabilities in ways that highlight the beauty of their disability. My aim is to be respectful of existing polytheistic religions while simultaneously recognizing a lack of deities in world religions that have disabilities, due to the widespread levels of hostility towards disabled people throughout the world.

  3. Production Design:
    My collection of paintings will be in a quasi-zine format in the sense that they will all be bound together in a booklet. I’m not sure about the sizes of the paintings but my projection is that they will be around 6 inches by 9 inches each. When the booklet is opened, on the left side there will be an in depth description of the god as well as quotes and analyses taken from some of the readings we’ve consumed in this class. On the right side will be the painting so the viewer can reference the information on the left as they view the image. Ideally, I will make ten different paintings, some being real gods from world religions, and others being the ones I have invented. The beginning few pages I will introduce the concept of the piece, how it is influenced by disability studies, and what I hope to achieve with its creation.

  4. Production Plan:
    My first course of action will be deciding which disabilities these gods will have, how best to represent them in a respectful manner as well their other intersecting identities after researching their specific disability. I will decide how to represent any prosthetics or tools they use such as wheelchairs, canes, and other equipment. Next I will decide upon their names and domains of power. I will collect images off of the internet for inspiration concerning the aesthetics of each god as well as how to visually represent their disability based on the real people with the disability. I may take inspiration from some of the stories featured in the book Disability Visibility while making sure to give those writers credit.

    -By November 13th, I will have the general information on each god solidified and a general structure for the presentation of my research.
    -By November 20th, I will have done at least one rough draft of each of the paintings.
    -By December 4th, I will have all of the final drafts of the paintings completed as well as my writing done.
    -By December 8th, I will have the booklet put together and the finishing touches done.

  5. Consultation:
    My biggest concern with this project is the possibility of accidentally representing any of the disabilities I choose to feature poorly, and so I would love to check in with you on my ideas for each one once I have them, to make sure I’m being respectful. My goal and intent will be to use person/god first language as well as with the way they are depicted because the last thing I want is for them to look like a fantasy-world versions of medical images. I worry that the premise of this project might be skewed by my perspective as a non-physically disabled person, and so if you have any concerns with any part of this project I would love to go over them. My proposed project is very art-based, and less research-based focused mainly to inform my choices in the production of the pieces, so if the level of research I plan to do at any point seem subpar, I want to supplement it to the best of my ability using the readings we’ve gone over in class as well as outside readings I’ve found on my own. I can also have a conclusion section at the end of the booklet where I go into more depth on the research that informed the project if you think that would be beneficial.

  6. Citations:
    A few possible readings that may influence my project:

https://www.greekmythology.com/Myths/Figures/Teiresias/teiresias.html

Disabled Gods: A Critical Disability Studies Analysis of Ancient Greek Myths (umsl.edu)

What is Metis? | Dolmage | Disability Studies Quarterly (dsq-sds.org)

Adding a personal touch to the Disability Rights Movement,”Crip Camp: A Disability Revolution

To begin “Crip Camp”, the viewers are introduced to a cast of colorful people all who attended or worked at Camp Jened. The cast is comprised mostly of people with disabilities so they offer a rarely seen view on the 1960s and 1970s. Each cast member gives their accounts of their time at the camp, not at camp and how it impacted their views on life. The film transitions to focus on the campers’ life after the camp, in particular the community they had become for each other. Many of the campers were in the frontlines the Disability rights movements allowing the viewer to get a more in-depth view of the protests for the enforcement of the Architectural Barriers Act.  A while providing examples of why it was necessary. The film provides context and details for a not necessarily informed audience well, making it a good introduction to the disability rights movement. The use of personal narratives allows more complex issues for the disabled community, such as access, independence, and sexuality, to be shown in way that person with no background knowledge in disability studies can digest. “Crip Camp” is a great guiding piece when introducing the fight for Disability rights to a new audience. It hooks the viewer with personal details, sometimes employing nostalgia to invest the viewer but the film does not rely too heavily on this tactic. It remains relatable to both a younger and older demographic, making perfect to introduce disability studies to older teenagers.

The films central message discusses how inclusion and exclusion affect the lives of disabled people. The start of the film is sets up view of the campers’ lives in a place where they felt included, where they had access to live life. One camper is makes a remark about never being sidelined at Camp Jened, relating to a broader aspect of access,” linked to a more inclusive society with greater opportunities for social and political participation (pp.15),” as put by Bess Williamson in Keywords for Disability Studies. Williamson asserts that the issue of access has two distinct facets that occasionally limit each other, one the access to be a citizen, to be a person and the other to have the ability to enter and move about a space(pg.14-15). The films central conflict the occupation of the San Francisco federal offices, Highlights the fact that physical access allows people to access their citizenship and personhood, but first they need to be seen as person by those limiting their access. The film overcomes this barrier easily by displaying the person first then calling for better access.

The film is most suited for an audience who has passed their late teen or is actively in their late teens. There are a couple points in the film that would need to be skipped due to graphic language, but for the most part they are not central scenes to main conflict of the film, they are just a couple of many scenes humanizing the campers. Due to nature of film’s topic a certain level of maturity and care is needed in the audience to get the full extent of the film’s message. That being said, for people to grow into this film’s ideal audience, showing them “Crip Camp” and discussing it with them is great step to take. I do urge any teachers thinking of showing “Crip Camp” to consider their classes and what type of discussion would be the most productive for their class. “Crip Camp” is a film with layers and certain groups may attach to one layer over the others, so any discussion or viewing should not be structured like a one size fits all.  Also some background information on the ADA, ABA and early disability rights movements may be necessary to contextualize parts of the film. 4/5

referenced sources:

Willianson,Beth, “Access” ,Keywords for Disability Studies.  Edited by Adams, R.Serlin, D., & Serlin, D. H. (2015). NYU Press. pp.14-17

Camp and Politics

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

  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

  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

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

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

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.