Every change begins with a single step. Every smile is a memory for life.
Come make the world a more inclusive and welcoming place with me.
EDUC-Y 650
This is the landing page for Ross Edelstein's EDUC-Y 650 coursework
01
Response 1
As a museum professional, and a recent graduate of a Museum Studies master’s program, this set of readings resonated heavily with me. One major topic in disability is representation; not only the need to get Disabled people in roles about Disabled people and to positions of power, but also how disability is represented. Take autism for example; the perception that a look for resources would give you is that every Autistic person is a young white male child. The reality is that it’s very different, and this is a perception imposed by those seeking to push a narrative. In particular the pieces on found photos and the crying child photo really connect heavily with this thread, as well as other experiences I have had.
Beyond this, from the lens of a museum professional, this work affirmed the horror that I felt during my master’s at a number of what are considered “best practices,” as well as my relief in knowing that I have had the opportunity to work with folks who are working to right those wrongs, at least in some aspects of these injustices. Beyond that, it affirmed that what I learned about actually taking the time to engage with those whose culture and work you are planning to engage with, as well as prioritizing the voices of those who live an experience every day, is at least a starting point in working to try to make things better.
While I can never truly understand having the entirety of my culture tokenized, twisted, and then used to dehumanize me personally, I hope to at least work to correct that injustice that so many have faced.
02
Response 2
What most resonated with me of the readings this week was the video Caine’s Arcade. This is, in part, because of my own experiences working in museums, as well as my own past experiences creating in cardboard, in several ways.
The more formal of these experiences came during my time at the Indiana State Museum. In fact, it was one of the first experiences I had that put me on the path I had now. Near the start of my time at the museum, as an “engagement specialist” doing gallery interpretation, one of the temporary exhibits was one named Cardboard Engineering. Essentially, donated boxes were put in the museum, with tape, crayon, and scissors to work with, and children of all ages were given free reign to create. Seeing what people could imagine through this exhibit was amazing, and it also introduced the idea of cardboard as a serious medium. In fact, the first reference to work for Autistic people in museums was related to this; there had been a life-sized cardboard mastodon in the museum which needed to move, and I was tasked with helping move it. I was within the ribcage of the creature, and as we were moving it, my boss’s boss asked if it would “make a good autism quiet space.” Of course, I hadn’t “come out” as Autistic at that point, so I smiled and nodded, but this subtle bit of ableism got me thinking, and planted a seed in my mind.
However, I also have some informal experiences creating in cardboard. In undergrad, I had a lofted bed, which made it somewhat difficult to have things to work with. My second year, I took an old shoebox, the kind that you get from Nike with the lid as an integral part, and converted it into a sort of nightstand in the air, held to the bed with duct tape and it’s lid wrapped around the rail. Over the years, I added to it – stickers, different colors of tape, tape to repair cracks, and so on, and it took on a life of it’s own. So too, did my use of cardboard to create an incubator for a science fair project – a space with a light bulb to house petri dishes, and allowed me to create a place where I could creatively solve the problem.
The value of being creative and playful in creation, whether it’s something more purely fun as in Caine’s Arcade or Cardboard Engineering, or something where a more serious task is accomplished as my other examples, has been important to me. Creation, at the end of the day, always should have an element of joy to it; it’s what makes life worth living.
03
Connections of Harm
Above: A Mind Map titled "Connections of Harm." On screen is an image with short phrases or words connected by arrows of varying style, shape, and color, arranged in a vaguely circular pattern. In the center is "The Human Disaster." To the direct let and right, connected by a single direction plain grey arrow, are "To Each Other" and "To Our World, forming two mirrored halves.
"To Each Other" is connected to "Direct Harm," to the upper left, and "Indirect Harm," to the lower left, with plain grey arrows. "Direct Harm" is connected to "Capitalistic Drives" directly to the right, "Commodification of Our Selves" to the upper right, and "Colonialism" above the prior, all by grey arrows with a single direction. "Indirect Harm" is connected to "No More Village" to the direct right, "Competition for Resources" to the lower right, and "Ignorance of Difference" to the lowest right, all with plain grey arrows with a single direction.
"To Our World," on the right side, is connected similarly to it's own "Direct Harm" to the upper right and "Indirect Harm" to the lower right with single direction plain grey arrows. "Direct Harm" here is connected to "Industrial Capitalism," to the direct left, "Commodification of All Things," to the upper left, and "Extractive Practices," to the highest left, all with plain grey single direction arrows. "Indirect Harm" is connected to "Waste and Want" to the direct left, "Sprawl and Displace" to the lowest left, and "'New Is Better' Mentality" to the lowest left, all with plain grey single-direction arrows. The last label is slightly covered by a watermark.
On both sides, all categories under "Direct Harm" are connected with bi-directional red, thick arrows. Separately, all categories under "Indirect Harm" are connected with the same kind of arrow. The three phrases for each category are all connected with dashed blue lines with bidirectional arrows. In the top center, a phrase reads "Cultures of Hate," connected to all 12 lowest-level categories with dotted blue one direction arrows. "Cultures of Hate" is connected to "Direct Harm" on both sides with a thick, dashed purple one direction arrow, which is then connected to "indirect harms" with the same arrow. Finally, "Cultures of Hate" is connected to "The Human Disaster" with a single, thick green arrow with one direction.
04
Everything about Us, Without Us
The piece "Excavating AI" in particular struck me this week. While it mostly described in terms of the politics of machine learning, the same issues of representation - and what is represented - are present in other areas. A running issue I have is the representation of Autistic people in media, and stock image databases strike me as having similar issues. The following is a very brief exploration of how Autistic people are represented in stock images, based on searching Adobe stock for "autism" and selecting several images representative of the experience. To the right is the results page from the search.
This image, the first showing actual humans in the search, also warrants discussion. What is represented and shown is a young boy working with a teacher. The boy is in elementary school, and a teacher is shown to be guiding them in a simple matching activity. While autism may often have accompanying intellectual disability, images like this add to the idea that every Autistic person has an intellectual disability, as well as adding to the infantilization of Autistic people through connecting the disability to youth.
This image, in particular, bothered me. Autism is significantly underdiagnosed in non-white populations. This image, titled "African American father hugging his two sons," is the only image of a Black person in the first three pages of the search. While a positive image, it doesn't necessarily need to have autism applied to it; the same result could be attained from using the image without tagging it, seemingly unnecessarily.
This is another very common graphical kind of representation. These are often widely distributed to help "inform" parents about early signs, which is not necessarily a bad thing. However, these early signs are often portrayed as "this is why your kid is not behaving "properly," or uses negative language - instead of a meltdown, for example, the child is described as having "hysterics." The preference to play alone is shown as a negative, as is avoiding eye contact and aversion to touch. These behaviors are not inherently detriments to an Autistic person, however, they are unexpected and portrayed as "wrong."
To conclude, the way that images are tagged - in many, many fields - is problematic. The reality is that it is often those in positions of power who are creating these labels, as well as the representations. In this case, Adobe Stock and the contributing creators hold this power. This is how the stigma that exists around autism, and really any other disability, is created; people existing who are most affected by these decisions rarely have input on the changes made. And while the search I found now has radically changed for the better since I originally publicly complained to Adobe Stock in February, there is still a long, long way to go. As long as the most common image is a little white boy having a bad time, these images still will not be equitable.
The first image that I was struck by in particular was this one. The girl in the pink jacket in the center is a teenager with Down Syndrome. Down Syndrome and autism are two distinct disabilities; yet this massive error is repeated elsewhere. Even if she is a teen, as well, she is shown with colorful balls and stuffed animals. While they are certainly enjoyable, this is an infantilizing representation of disability.
On the right is an image of a boy having what I presume to be a meltdown. This is a very common representation of autism; yet, a meltdown only happens when someone is completely overwhelmed. Because autism is inherently an invisible disability, images like this often become the representation, and create stigma against Autistic people and the believe that we all will constantly be having meltdowns. Again, it is also a young boy in a classroom.
This image is one that is representative of many ways autism is portrayed. While intended to be positive, the phrasing "Always Unique Totally Intelligent Sometimes Mysterious" has an air of misrepresentation about it. Autistic people are not a mystery. Beyond that, downplaying the challenges Autistic people face in their day-to-day lives is a well-meaning but common struggle; "positivity porn" like this can often lead to ideas that lessen the support people receive.
This is another common trope: the color blue, the puzzle piece, and the idea of "awareness." To start, almost everyone is "aware" autism exists. The Autistic community has pushed for "acceptance" over "awareness," but for someone trying to find something for April as autism month, this is the likely thing they would find. Additionally, Autistic people generally aren't fond of the color blue and puzzle pieces - they are linked to Autism Speaks, which is an organization that has caused far more harm to Autistic people than help despite being the largest non-profit about Autism, and also has no Autistic board members. Cementing these ideas in people's minds with stock images only harms movement away from these kinds of ideas and groups.
05
Videography and Connection
To say that the idea of using video to connect with others – especially video art and participatory video art – is something that resonates with me is an understatement. Some of my earliest connections around art and disability were based on creating videos and sharing them. Video-making and performing, even in an academic or formal way, was the best form of connection I had during the earliest days of the pandemic. Even to this day, I find that creating videos is something that I take great pride in, and especially when given creative control, it becomes a medium that turns what might be a boring visual lecture into something more exciting. Video, in particular, and collaborative video, allows for multisensory approaches, albeit limited to only sight and sound. For example; I created a video for a guest lecture earlier in the semester, and was inspired by a random thought and nostalgic memory. One of the first video games I played as a child was Pokémon Sapphire, and the introduction is titled “Welcome to the world of Pokémon.” Having joked to myself as I was writing the outline for the video that it was a “welcome to the world of autism,” I ended up creating a video themed around it; using Premier Pro, I created a video that incorporated elements of the game as well as gave me the ability to add additional visuals, and background music that resonated with me. Looking back, if I was able to create it collaboratively, it would have been an even more powerful project.
06
Ordinarily Extrordinary
The video for the day I will not be present due to my surgery.
07
Child Coding
The concept that asking children to share what they are experiencing in order to understand their experiences is one that, to me, feels like the only strangeness around it is from the fact that others find it strange. But, my overwhelming experience in research is that understanding others is usually done from a position of power; the researcher holds the keys to actually interpreting the experience, and must never let the keys go, lest someone who is perhaps unworthy or uninitiated add “wrong” information to the body of knowledge.
Yet, this is a fallacy itself. Nobody knows what they have lived than the person who lived it. This is especially true for cases where an experience is often diluted by time. We have all been children, but we were children years ago. Our memories of childhood are stained by our experiences since then; especially for those who are parents, and answering for the experiences of their children, it is impossible to not apply your own perception of childhood to talking about that experience, just as it is impossible to talk about any other experience without your own lens coloring the way you conceive of it.
Both of the works for this week made sense to me, and seemed like simple ways to gather the information they were looking for; children may not be able to communicate their experiences in the language that tells researchers what they experienced the best, at least not verbally, but that doesn’t mean there aren’t still ways to engage with the experiences they have.
What resonated most to me of these works was that idea of power, and who holds power, being shifted. Even if the researchers and filmmakers were providing the equipment and research knowledge, this kind of participatory research inherently takes most power of collection away from the researcher. In my opinion, this allows for more honest and realistic information sharing.
A running belief of mine is that humans lie as a social tool, and that this is a major part of research. Take recent research on guardianship in Indiana that the Indiana Institute on Disability and Community put out; it did not paint a favorable light on guardianship, but given the abuses of that system, it is important to recognize even then that honesty might not be, in the minds of those who might recognize they are doing something wrong, even if they don’t see another way, the best policy, and may negatively impact them if they are honest about their beliefs and behaviors.
This applies very broadly; I think that children especially do this often. Giving them the freedom to create, however, I believe removes that barrier of social necessity; especially for children who come from a culture where adults may not want to hear the truth, but what they want, asking directly “did you like that” will not give the same response as asking them to record what they experienced and then talk about those recordings. This gives a researcher a chance to have better, more robust, and more honest data to work with.
08
Project Name
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09
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04
Reclaiming Competence
This short poem, in dactylic hexameter, is based upon the idea of self-advocacy and storytelling as a way of healing the harms inflicted by often well-intentioned systems.
I never felt more incompetent than when I tried to get
Accommodations from disability services at
My undergrad and my masters. Because of the way that they
Decided that I “should” have autism they gave me extra
Time on all tests even though I directly said that I did not
Need it. I am always the first one done on all tests.
But because I am autistic they tried to “help me” with this
Because it’s what they were told “people with autism” should have.
I never felt more incompetent than when I was told that
The way that I said would work to help me turn my work in on
Time wasn’t “right” and was not an option that could be tried then.
Because of the way that they were told that someone should be
“Organized,” and because they didn’t trust me to use my laptop
In school even when they said that they couldn’t read what I handwrote.
I never felt more competent than when I was able to tell
My stories to students and teachers and museum educators
And to the public and to researchers and to the next group
Of new autistic self advocates who are learning to tell
Their own personal stories and their own experiences to
Help the world be a place that we can be welcome as our own true selves
And heal the wrongs that others have decided to inflict upon
Us for things that we did not choose to have as part of
Our lives, such as being disabled and autistic and that
We don’t always act like others want us to behave.