IMG_20210316_123322690.jpg

EDUC-Y 650

This is the landing page for Ross Edelstein's EDUC-Y 650 coursework

Naranjo.jpg

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

Edelstein Mind Map Land and People.png

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.

1 Search Page.png
2 down syndrome or autism teenage girls playing balls with family.jpeg

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.

4.jpeg

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. 

6.jpeg

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."

8.jpeg

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.

3 boy with autism learn weather using cards.jpeg

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.

5 African American father hugging his two sons.jpeg

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.

7.jpeg

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. 

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.

9.jpeg

05

Project Name

This is your Project description. Provide a brief summary to help visitors understand the context and background of your work. Click on "Edit Text" or double click on the text box to start.

06

Project Name

This is your Project description. Provide a brief summary to help visitors understand the context and background of your work. Click on "Edit Text" or double click on the text box to start.

07

Project Name

This is your Project description. Provide a brief summary to help visitors understand the context and background of your work. Click on "Edit Text" or double click on the text box to start.

08

Project Name

This is your Project description. Provide a brief summary to help visitors understand the context and background of your work. Click on "Edit Text" or double click on the text box to start.

09

Project Name

This is your Project description. Provide a brief summary to help visitors understand the context and background of your work. Click on "Edit Text" or double click on the text box to start.

04

Reclaiming Competence

AdobeStock_509333854.jpeg
AdobeStock_232699427.jpeg
thumbnail_IMG_4790.jpg

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.