Author: Djellibeybi

Major Project: Accessibility in the Chemistry Department

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Artist statements:

In this major project, the stories of two female disabled chemists are analyzed to discern what are the major barriers for disabled Chemists in the laboratory. The info obtained through these narratives are then used to analyze one of the chemistry labs in the Chemistry building at Western Washington University, (this is not representative of all labs on WWU campuses. It is merely a look into one lab.). There are two main ways Western can improve accessibility in the lab. 1) Create a more accessible environment, with broad clean halls, wheelchair accessible work environments, and more comfortable instruments. 2) Encourage disabled scientists to develop a support network in the scientific community.

The paper was originally designed to be a multi-disciplinary look into the narratives in the scientific community, but due to time restraints, the focus was narrowed down to accessibility in the Chemistry lab, and how these principles can be applied to Western’s labs. You will find the completed project attached to this post in a pdf.

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English 401: A retrospective look at the past three months.

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From your beloved friend, honorable man, dearest of scientific minds who exist on the liberal plain.

To the dearest Readers, Beloved in all forms and municipalities.

Greetings.

It is a requirement of this academic course on disability rhetoric that I present to this humble assemblage, an account of my experience of this course over the last three months. This is not a comprehensive look into the entirety of my time involved in this course, but rather a qualitative look back into the nature of the topics involved, the intellectuals I had the pleasure of interacting with, both in written, virtual, and physical forms. This should be an exhilerating experiance for all peoples involved, so let us digest the following info.

I was not certain about a lot of the experiences I would gain from this class; it was very little comfort that I was the only male of my species, the genus homo discipulus, in my course. It was some small relief that my teacher was the only male of his respective species, Homo Lectoris, so we could convalesce on our shared experiance of being the only ones of our kinds as he navigated me through his home planet, Panepistimio-Taxi.

It was a topic that I had an interesting, having had a brother with moderately severe autism, but was not particularly knowledgeable about. I found the professors lectures style was very engaging, using multiple forms of media to engage with the students in different ways. The videos where definitely interesting, with films such as “Crip Camp” and “Sins Invalid” (Which I have to admit, was difficult to watch for me – the only time I felt uncomfortable in class). The text, Disability Visibility was a very interesting collection of short essays and stories from different disabled people from different perspectives and backgrounds, and I thought it was fascinating. My favorite was Blind Astronomer Finds a Way to Hear the Stars, which talked about disabled scientists in the scientific community. This essay inspired me to look into disability in my field, which is Chemistry. I’ve also thought the academic papers where interesting, though I often didn’t have that much time to read through them all the way. Much of the discussion on these papers did help with catching up with anything I missed though.

Learning about how disability affects society, personal relationships, thoughts, academia, etcetera, was very fascinating. It gave me a few ideas on how to become the new dictator of this new world. But other than that, I thought this class was extremely thought provoking, especially on my biases and opinions, and I definitely involved into a more advanced disciple.

Sincerely,

Future lord of the universe.

Disability in the Laboratory

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I’m working on writing a paper on accessibility in Chemistry labs. It was a broader topic, but I decided to narrow it down to my discipline because a general overview of disability and science is too broad, but hopefully a look into the specific branch of chemistry, and more specifically on Chemistry labs, that I might be able to learn something interesting. Here’s what I’ve got so far, which isn’t very much and definitely not complete, but it’s something.

Introduction

People with disabilities have been a long part of the scientific discourse and discovery for centuries. John Dalton (1766-1844), who was colorblind, was one of the first people to scientifically study colorblindness and it’s causes, as well as being an influential chemist, physicist, and geologist. Charles Steinmetz, a mathematician, and physicist, had Kyphosis, a condition that made him look according to the Smithsonian, “four feet tall, his body contorted by a hump in his back and a crooked gait, and his stunted torso gave the illusion that his head, hands and feet were too big.” He was the first to describe the law of hysteresis, which was influential in the development of alternating- and direct-electrical current technology (AC and DC). And yet, perhaps the only disabled scientist you probably know is Stephen Hawking.

I was brought into this discussion with an essay presented in the book “Disability Visibility” written by Wanda Diaz-Merced titled “How a Blind Astronomer Found a Way to Hear the Stars” (the essay was originally presented as a Ted talk, an astronomer who developed blindness during her college studies, and found a way to translate graphical data to sound, a process called sonification.  

  1. A look around the narratives presented by American Chemical Society
    1. Krystal Vasquez, “Excluded from the Lab”
      1. https://www.npr.org/2021/05/27/1000869161/disabled-scientists-are-often-excluded-from-the-lab
      1. Krystal Vasquez does talk about access in conferences, which is a good tie in with Margaret Price’s “The Construction of Disability in Conference Policy
    1. Annemarie Ross
      1. https://www.youtube.com/watch?v=MvpLzkDdulw
      1. https://www.youtube.com/watch?v=Hni7BxQM7c8
  2. A look at the guidelines presented by the ACS
  3. Perhaps a look into the chemistry labs and how they make their labs accessible. (Field Trip! This could fun!) See how Western complies with these guidelines.
    • Here’s some picks of the disability amenities presented in the lab that I work in:

We Can’t Go Back -RAB response

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An essay derived from a statement presented before the United States Senate Committee on Health, education, Labor and Pensions on June 21 2012 from Ricardo T. Thornton Sr. Ricardo discusses his life experience in an institution, Forest Haven in Washington D.C.. He and many of his family and loved ones had been placed in institutions like Forest Haven, and he was very familiar with the abuses that take place when rights are not respected between client and caretaker. When he was able to leave Forest Haven, he lived in group homes where he met his future wife, Donna, and began to develop a good life for himself because he lived in a community which encouraged him to succeed. When given the opportunity, Thornton believes the disabled can succeed in society and that it is not good to separate the disabled from the community and any opportunity to succeed.

Quote:

“In the institution, I didn’t get to think for myself. The Staff thought for me and made all of my decisions. For a long time, no one expected anything of me.” Pg. 85

“I hear people say that some people are too disabled to live in the community, but I’ve seen people just like the people just like the people still in institutions who do so much better in the community – because no one expects you to do anything in the institution but survive.” Pg. 87

“Segregating people is always bad; people never grow in those places and are safer and happier in community.” Pg. 89

I thought that this essay was very well written. I would have loved to listen to this guy read his speech. Maybe it’s available online. The guy seems like an amazing person, and I wouldn’t mind meeting him, to be honest.

Nurturing Black Disabled Joy -RAB response

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A short essay into the personal experience of Keah Brown, a black woman with cerebral palsy. She talks about feeling joy and happiness as a black person with disabilities. She explains a little about her personal life, having written a book about her personal experiances, called “The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me” as well as being a progenitor of the hashtag #DisabledAndCute in 2017. She points out that she chooses to be happy as a disabled person. She wants to be remembered and noticed for the joy that she left in this world.

Quotation:

“Embracing my own joy now means that I didn’t always.” -Pg. 117

“I wondered why this positive message would elicit such negative reactions, and I could come up with only one reason: these readers, both disabled and not, reacted defensively because they’re not centered in my story – because I’m calling for inclusion that decenters whiteness” -Pg. 118

“Calling out ableism, racism, and homophobia in marginalized communities through my writing. It means that I’ve literally stopped apologizing for the space I take up on stages or in the airport.” -Pg. 118-119

Reflections:

While I can appreciate the sentiment that she is trying to make, there’s some things in this essay that kind of got to me. One is her idea that people are uncomfortable with her being a happy disabled person because she is black. Why should that be a problem? There are plenty of black people with disabilities – I know a few personally. And then she talks about how black people are represented in the media. I’m generally one who doesn’t care about representation in the media. Since when has media been an accurate reflection of human life? It gives the whole essay a narcissistic tone that is difficult for me to enjoy or ignore. Even so, I’m glad Keah Brown was able to share her thoughts – it’s obviously making a difference in the lives of many disabled people, and I can appreciate that.

Major Project Proposal – “Disability and Science”

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Disability and Science

An examination on rhetoric and science implemented by disabled people, written in a somewhat formal style reminiscent of ACS writing standards for scientific papers, but not strictly conforming to the guidelines. 

Questions:

  1. What is the rhetoric of disability in science?
    1. Popular examples:
      1. Stephen Hawking – Physicist, motor neuron disease
      2. Temple Grandin – Animal behaviorist, autistic
      3. Solomon Lefschetz – Mathematician, lost both hands.
      4. John Forbes Nash Jr. – Mathematician, mental illness (Beautiful Mind)
      5. Albert Einstein – Physicist, believed to be autistic
    2. Other examples
      1. Wanda Diaz-Merced
      2. Caroline M. Solomon
  2. How has their disability been reflected in their scientific pursuits? (What disciplines do they go for? How does their disability affect how they see their field of interest?)
  3. Pop. sci vs.  Academia (science tinged with personal stories vs. strictly factual analysis)

Potential Resources:

  1. Disabled Scientists Are Often Excluded From The Lab; Copyright © 2021 NPR. https://www.npr.org/2021/05/27/1000869161/disabled-scientists-are-often-excluded-from-the-lab
  1. Science and Disability: Interviews in the General Collection
https://www.sciencehistory.org/science-and-disability-interviews-in-the-general-collection
  1. Our Disabilities Have Made Us Better Scientists; By Gabi Serrato Marks, Skylar Bayer on July 10, 2019
https://blogs.scientificamerican.com/voices/our-disabilities-have-made-us-better-scientists/
  1. Celebrating scientists with disabilities – The Royal Society https://royalsociety.org/topics-policy/diversity-in-science/scientists-with-disabilities/

Crip Camp – Review

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“Disability history is inextricably entangled with all other topics of history.” – Susan burch and Kim E. Nielson.

What is the story behind the Americans with Disabilities Act? Very few people, I would say not many Americans, actually know how this act of legislation actually took place. This is disappointing, since the ADA is probably the greatest piece of American legislation ever passed since the civil rights movement. Now, offering a new narrative to the public is the 2020 film, “Crip Camp”, describing the lives and political activism of a group of disabled people who where influential in passing the ADA in 1990.

The film begins with the young disabled meeting each other at Camp Jened, the titular Crip Camp, one of the few camps at the time specifically designed for those with disabilities. The camp was started in 1971, and was influential in the formation of the early disability civil rights groups, fostering an independent spirit among the campers, encouraging them to be expressive, sexual, creative and happy and to seek a better life for themselves. The first half of the film describes the individual experiences of these campers, in particular, Judith “Judy” Heumann, Larry Allison, James LeBrecht, Denise Sherer Jacobson, and Stephen Hofmann, all of which offer their first hand accounts of the events that happen.

The second half of the film focuses on the civil rights groups and activities that these individuals became a part of as adults. Judy Heumann in particular became a pillar in the disability community, having helped found Disabled in Action and the Center for Independent Living. She was influential in spearheading some of the major disability protests about the implementation of Section 504 of the Rehabilitation act of 1973, organizing the sit in protest that took place between April 5 to May 4, 1977 at the San Francisco office of the U.S. Department of Health, Education and Welfare. After that protest, she and the organizations she helped start continued to advocate for the rights of those with disabilities, and she became influential in the passing of the Americans with Disabilities Act in 1990.

The film concludes by showing the remaining campers of Camp Jened meeting together at where it once stood, the camp having been closed since 2009. It’s a poignant and heartening ending to a film which documents the journey of a generation of disabled people. Such narratives are important, considering how history tends to remember the disabled, or rather not think of them, or worse- think of them as a nuisance and a pain. The film briefly covers this as it discusses this aspect of disability history when describing Willowbrook, an institution on Staten Island where many of New York’s disabled lived, and was notorious for being poorly staffed with a lack of food and supplies necessary for the care of the disabled – in one word, Hell. Campers from Willowbrook where said to have been practically stuffing their mouths with food because in Willowbrook they had been starving. Many of these disabled people who were institutionalized at Willowbrook would have no way to speak out about their situation or how difficult, dangerous, and horrible their lives where in such situations. It is important than to recognize when such people can speak out and tell their stories. Examples of this include the residents of the New York State Lunatic Asylum, who managed to speak about their experiences by making a monthly journal of poetry, editorials, essays, plays and art, in which they can talk about their lives, thoughts, and dreams. Such a tangible record of the lives of the disabled is rare, and we should appreciate the opportunities we have to enjoy them.

Already we are seeing the brave group from Camp Jened slowly vanish into obscurity, as many are dead or dying, and soon all we will have left of them are their stories. “We are all stories in the end.” As the 11th Doctor once told us. And we must remember; we must bear witness to those who have come before us, so that those who come after will have a brighter future. The work of these amazing people has given us all a brighter future and we must not squander it.

“Look carefully then how you walk, not as unwise but as wise, making the best use of the time, because the days are evil.” -Ephesians 5:15

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

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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.

Unspeakable Conversations – a RAB style review

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Summary:

Unspeakable Conversations, written by Harriet McBryde Johnson, is an essay presented in the book Disability Visibility, edited by Alice Wong. In which she talks about the relationship and correspondence she had with Peter Singer, a professor of philosophy at Princeton. Harriet McBryde Johnson was a lawyer and disability activist with a neuromuscular disease. She talks about the emails she sent to the professor, their debates, and how her views on people like Singer changed when confronted with them face to face.

Reflections:

I must say, I’m surprised at the very cynical nature the author takes with this essay, though I probably shouldn’t be. This woman has a cause to uphold and think of. She is a representative on behalf of her people, going off to a foreign land to debate whether or not they should exist – contentions and misgivings are bound to arise, no matter who you are.

All thoughts, no matter what they come from or how gruesome their content, must be granted an audience at some point, and when we suppress the conversation, it will force it’s way into consciousness. Ideas are hard to kill. Much easier to contain within a few members, but even then you still run the risk of dangerous ideas entering in, the same way we run the risk of getting a disease, though we immunize and mask and regulate. There is no full proof way of escaping ideas, unless by complete isolation which is unsustainable. While I don’t agree with the views of Brian Singer on infanticide and eugenics, and I don’t hold the same views as Harriet Johnson, I will grant them both a seat at the table of ideas.

Notable Quotes:

“Are we “worse off”? I don’t think so. Not in the meaningful sense. There are too many variables.” Pg. 11

“We should not make disabled lives subject to debate.” Pg. 11

“I keep forgetting that even people who know me well don’t know much about my world.” Pg. 14

“But like the protagonist in a classical drama, Singer has his flaw. It is his unexamined assumption that disabled people are inherently “worse off,” that we “suffer,” that we have lesser “prospects of a happy life.” Because of this all-to-common prejudice, and his rare courage in taking it to its logical conclusion, catastrophe looms.

Composite Essay (What I’ve Learned So Far)

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What does “Disability Studies” mean?

“To me, disability is not a monolith, nor is it clear-cut binary of disabled and nondisabled. Disability is mutable and ever evolving.” Alice Wong, Disability Visibility, Pg. xxii

I tend to interpret Disability Studies in three parts. Firstly, that Disability analyzes the history of the Disabled. How they lived in the past. How the attitudes and culture around the disabled has changed over the centuries. Disability is not a new phenomenon, and it has evolved and changed over time. Popular attitudes toward the disabled have and do change – with every moment it seems. And even how the disabled view themselves have changed significantly. How we have treated them has changed. Trying to treat those with disabilities as humans and deserving of love and respect has never been easy, but it is a necessary part of understanding who we are as humans. We can analyze the rhetoric of the past, the record of the ancients, to inform ourselves today.

Secondly, Disability studies analyzes the current climate of disability as it stands now – whether it be in popular culture, in day to day interaction, in social programs such as hospitals and housing services, in religion, in government, and on and on it goes. Now there’s a thought! We are all concerned about equality and representation in media and politics, but how many disabled politicians do you see in government? Why shouldn’t we have people with disabilities in positions of power? Yet I can’t name one physically or mentally disabled person in office today – the only indicators of disability being that a certain representative is claimed to be “insane” or “off their rocker”, which I tend to take with scepticism. A disabled person is usually as capable as an able-bodied person, but it’s still rare to see them in power.

And finally, taking the past and present into consideration, we decide what to do for the future. How can we improve the lives of the disabled, and everyone in general? What actions can we take to stand with and support those with disabilities. What actions are actually helpful and which are harmful? These are things that kind of have to be learned through trial and error, as everyone is different, and what is offensive to one is benine to the other. So, learning what we can, we make our choices and decide how we are going to act, and this will determine the future of the disabled, and by extension, the future of us all.

Where should we go from here?

“I am not ashamed that I cannot fast, but I know many who are, even though they are excused, […]. I miss fasting, but I’m happy to take on my newest mission of reminding those who can’t fast that there is no reason to put themselves at risk.” Maysoon Zayid, “If you can’t fast, give” –Disability Visibility, Pg. 38.

Religion – I come from a Christian background, but I would be interested in learning about how other religions handle disability (e.g. the muslim religion as described by Maysoon Rashid, in her essay, “If You Can’t Fast, Give”.)

“I think that if we limit people with disabilities from participating in science, we’ll sever our links with history and with society. JI dream of a level scientific playing field, where people encourage respect and respect each other, where people exchange strategies and discover together.” Wanda Diaz-Merced “How a Blind Astronomer Found a Way to Hear the Stars” – Disability Visibility, Pg. 173, (also available as a Ted Talk)

Education accessibility – particularly in the physical sciences, (Chemistry, Physics, etc.)

“While retaining the term disability, despite its medical origins, a premise of most of the literature in disability is best understood as a marker of identity.” Simi Linton, Claiming Disability – “Reassigning Meaning”, Pg.12

History of vernacular – I’m a fond fan of the nineteenth century. Got to love Charles Dickens and Jane Austen.

What has stuck out to me so far?

The book, “Disability Visibility” was an interesting read. I haven’t read the whole thing, but I have a fairly wholistic view of the piece. It was intriguing to read about different stories. I watched the video, “How a Blind Astronomer Found a Way to Hear the Stars” while reading the transcription of it written in the book. I appreciated the video because there were some elements of it that could not be transcribed to page, but I understand what the book was going for with this, coming up with a unique presentation of disability and how those who are disabled can and do participate in scientific discovery. I found that to be extremely fascinating, the process of sonification -turning data points into sound bits to make it possible for the visually impaired and blind to analyze the data (and often catching things those who see the data miss). I wonder if it can work with IR graphs in the chemistry department. IR is a (relatively) cheap and (relatively) easy way to determine the functional groups (alcohols, amines, carboxylic acids, ketones, etc.) of a molecule, and I wonder what it would be like if it was sonified. It’s an interesting thought. Chemistry is one of those subjects where it helps to be able to see what your doing, but a major part of it is analysis of data. What things can the blind man see, if we give him the opportunity?

I also found Maysoon Zayed’s essay on being a devout muslim with disabilities to be really fascinating. It made me reflect on my past and the place those with disabilities participate in religious groups. I would love to examine religion more, and the place the disabled have in Christian and Pagan cultures.

I’ve found in my brief life that a great many of the disabled community are kind and generous people who take their faith seriously. I’m reminded of a woman I’ve known who went by the name “Rolly”. She was wheelchair bound, and tried to attend church as regularly as possible. She was a sweet old lady. She would thank me for singing at church in her slurred speech, and she would often talk about missing her mother, a woman who had long passed into eternity. I haven’t seen Rolly in a while, I believe she has passed in the last year – but I may be wrong on that point. She was a sweet woman – one you don’t easily forget. It was sad when she wasn’t able to attend church when covid happened. But it was also beautiful how my church came together to make her feel connected; connecting her to the virtual service, meeting with her at her place when they could, and even singing Christmas hymns outside her window, when they couldn’t be face to face. Those were hard days, and those were beautiful days. It’s sad when a church treats people like Rolly with disdain – she was an essential part of the ministry there, and it won’t be the same without her and people like her. I wish I can say with more certainty what happened to her, but I honestly can’t – I’m sorry.

I found the readings to be most interesting when it covers the history of certain terms, like crip, disabled, ableist, in the vernacular of the disability community and in disability studies. I have never used the word crip before this class, and it’s not a word I intend to use much outside of this context. It’s kind of like the “N-Word” for the black community, and it’s unspoken rule: “It’s okay if a black person uses the word – but if your not black it’s racist.”. Crip occupies a similar space, but with less intensity. I don’t personally adhere to the exclusivity rule of using these words, but I recognize it as part of our culture at the moment, and the collective has the power to ruin me if I use it in common parlance, so I’ll be respectful.

All in all, this class has been rather interesting and has brought up some intriguing subjects. I can’t say it’s my favorite class of the quarter, but it’s certainly engaging, and the professor has done a good job.

Resources

Alice Wong, et al., Disability Visibility, Vintage books (a division of Penguin Random House LLC), June 2020.

Simi Linton, Claiming Disability: Knowledge and Identity, NYU Press, 1998.