Disability Visibility

Shining a Light on Disability Visibility

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Disability Visibility, edited by activist Alice Wong, is a collection of short personal essays written by a diverse group of disabled writers about their experiences with disability. As stated in the book’s back-cover blurb, “One in five people in the United States lives with a disability. Some are visible, others less apparent-but all are underrepresented in media and popular culture.” This fact necessitates a book like this one, because if disability is one day able to be seen as the norm, rather than a negative deviation from it, then nearly seventy million people in the United States will have their lives improve with the subsequent focus on necessary accessibility that many of the writers in this book advocate and create for themselves and the members of their community.

Among other uses, this book can give people with disabilities a sense of unity, faith in themselves and others in their capabilities to create change in the world, inspiration to tell their own stories, as well as a guide for building the healthiest relationship with their disabilities possible. For those who are nondisabled, this book can give them more awareness about the lives of people with disabilities, and help them recognize poor media representation that attempts to dehumanize disabled people. Reading this book can also inspire them to look within their own discourses for area where accessibility is needed so the responsibility of advocating for and creating it isn’t entirely placed on those who need accessibility.

One story in the book focuses on how an astronomer who became visually impaired during the height of her career. “How a Blind Astronomer Found a Way to Hear the Stars” by astronomer Wanda Díaz-Merced follows how she innovated her entire field by creating a technique of analyzing supernovas through sound, when previously, astronomers were only able to analyze them through visual reconstructions from data. This kind of novel innovation opened up an entire scientific field to people with visual impairments, and was only possible because of Díaz-Merced and a few of her colleagues’ determination to create accessibility. She states that, “If people with disabilities are allowed into the scientific field, an explosion, a huge burst of knowledge will take place” (Díaz-Merced. 173).

Another story called, “Imposter Syndrome and Parenting with a Disability” by writer and activist Jessica Slice who has Ehlers-Danlos syndrome focuses on her self-worth in regards to motherhood. She expresses in the piece that she is often unable to provide for her son in a way that other mothers based their identity of motherhood on, mainly in regards to physical activity. However, Slice gives the perspective that although she may not be able to pick her son up or drive him places, she is able to give him the emotional attention and steady presence that the children of nondisabled parents often lack from their caregivers. She writes that, “Love isn’t a collection of capacities, of practical contribution” (Slice, 132).

One last story overview is about “If You Can’t Fast, Give” by Muslim actress and comedian Maysoon Zayid, who has cerebral palsy. She expresses how Ramadan, or month of fasting that takes place yearly in Islam is not a requirement for people with disabilities or illnesses to undertake. Despite this, she chose to participate for as long as her cerebral palsy allowed. When the time came that she couldn’t participate for serious risk of her health, she decided to instead follow the tenants of her religion by making donations to charity in place of Ramadan, instead of feeling ashamed that she could no longer participate in the way she wanted to. Zayid states, “Muslims fast so they can suffer a little. It is important not to die in the process. Instead, those who can’t should channel their devotion into charity. This will not only help you stay healthy but also will help someone who is genuinely suffering” (Zayid, 38).

What each of these stories have in common is the idea that although people with disabilities might not be able to participate in their discourses like their occupations, their families, and their religions in the same ways nondisabled people traditionally do, they still occupy an essential role in their communities and are able to create meaning in ways that greatly improve the world around them. In fact they often do so in ways that nondisabled people either cannot or choose not to. Disability Visibility highlights this idea very well, the only problem I found with the book was that I wanted to hear more than a few pages of the experiences of these disabled writers, and many others with disabilities not mentioned. After all every of the one in five people with disabilities in the United States experiences their disabilities differently, especially within the context of the other parts of their lives. Perhaps a sequel is in order.

In Their Own Voices: Disability Visibility Review

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Disability Visibility is a multi-author book filled with numerous short narratives from the perspective of those living with a disability. Separated into four distinct categories, the stories may seem overlapping in tone or themes, but not in the sense that every experience is the same. If you are to take anything away from this wonderful novel, it should be the emotional ties that are in this book between authors (that do not know one another) and the ones that are created from author to reader. An important note, and one I tend to highlight, is the inclusion of different mental and physical bodyminds. When I refer to bodyminds, what I really mean is the non-separation that exists between the human body and mind. This novel celebrates every kind of different bodymind that we typically don’t see represented in regular media (tv, movies, literature, news etc.). And with the exposure of this book, the authors represent themselves in their own voice on their own terms.  

Some might wonder why such a piece of literature needs to exist, why does this matter so much? That’s a wonderful first question to have. Disability Visibility is for the humanization of those living with a different bodymind than the status quo through the artistic use of short, educational, passionate narratives. It does not serve to explain or justify everything to the reader. The authors may very well have had to feel that unnecessary burden in their life already, and that is just it. To take the time to formally step-by-step educate a reader throughout this book is to justify their existence, to strip away their right of just being. With the power of storytelling, you get moments of insight and truth like this; “Fortunately, love isn’t a collection of capacities, of practical contributions. My love isn’t diminished by my inability to carry my son up the stairs, just as it isn’t diminished by the fact that I didn’t carry him inside the uterus.” (Pg. 132). This excerpt is from one of the shortest chapters and it is written by Jessica Slice. Slice spends no time explaining any social stigmas associated with her disability, nor does she define any terms. Instead, the chapter is mainly dealing with her range of emotions and thoughts when discussing her identity through motherhood.  

The novel is not an academic piece. It is written in an extremely personal manner but still reads with an energy of empowerment, passion, and wit. Through the narratives one can see the marriage between relationships in the outside world to the growing one with oneself. Author s.e. Smith says it best in their chapter claiming, “Members of many marginalized groups have this shared experiential touchstone, this sense of unexpected and vivid belonging and an ardent desire to be able to pass this experience along.” (Pg. 272). Smith masterfully switches between a storytelling, descriptive perspective to a large-scale one critiquing social normalization and ableist opinions that object to what they name “crip spaces.” Each narrative provides some readers a relaxed feeling of “I’m being seen” while giving others a necessary call-in to see things in a new light with necessary self-reflection. The pieces are intimate. You feel like you’re having a conversation with the author and most of the time in my experience, the conversation does not end there. Whether you find yourself in an academic setting discussing the stories or just a group of friends, it’s almost promised the words on the pages will have you translating what it meant to you with someone else. The novel is a true love letter to identity and the human spirit that thrives off being unique in harmony with the bodymind you have. With that, I leave you with another quote by Dancer Alice Sheppard: 

“I have come a long way from the brokenness of disability expected by the nondisabled world to an imagined space where the binary of “broken” and “whole” seems to exist. I look forward to learning about the effects of this thinking and to discovering what is next.” (Pg. 167).  

Bridge the Gap, See the Future, Disability Visibility Review

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The pieces functions through very personal stories, the real lived experiences of the authors. There is usually one or two common themes in these stories as the author places the disability lens over certain topics. They usually present the problem: marginalization, impostor syndrome, facing oppression and othering, and end with a fairly positive outcome of their experience. Most of these outcomes are internal, of acceptance or finding a community, with some expressing a call for change, to provide to charities and to open up the line for conversation and in-depth discussion.

The book features diabled stories, but could be especially valuable to abled people as well. For the book’s disabled audience, it serves to be a sort of crip space, where stories of disabled people are open to be shared in all their complexity. For the abled audience, this book serves to be both informative, by making an effort to share these stories and call to action that change that has to be made to accommodate disabled people. It explains how accessibility would help everyone once it is achieved. Through innovation, contribution, research and spreading awareness, disabled people would not only be seen, but also heard and accommodated for. 

It explored the complexity of allyship, found within family, friends and in the workplace, although the latter of the three is more in light with the importance of accessibility, and the awareness of the advantages and disadvantages of everyone who occupies a space. When it comes to fields and the workplace, employers keeping an openness to disability would only serve to welcome new perspectives into the workforce, Wanda Díaz-Merced shares her story with her unique perspective, “I think science is for everyone. It belongs to the people, and it has to be available to everyone, because we are all natural explorers” (172).” Not only is the workforce in need new voices, but there are many social aspects of disability that people ought to learn more about. 

Alternative options for disabled people to participate in traditions that usually abled people could participate in without issue. Maysoon Zayid explored such limitations, saying ““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. Muslims fast so they can suffer a little. It is important not to die in the process.” (Pg. 38)” The physical availability of the world is also of importance, Sandy Ho  explains that, “As a marginalized disabled person I want it all: for all of us to remain as fixtures in our shared worldviews, for the space to do more than survive, and for our voices and presence to experience the indelible freedom that comes with being louder.”(116) The world has perpetuated the idea that the abled person is to be catered to whilst disabled people must struggle to find spaces for them to be allowed to fit in, this book explains how backwards that logic is in the most personal of stories.

RAB: Imposter Syndrome and Parenting with a Disability

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Imposter Syndrome and Parenting with a Disability by Jessica Slice 

Summary: 

In this emotional and heartwarming short narrative, author Jessica Slice speaks on what it is like to go through motherhood so far while living with a disability. Slice was diagnosed with Ehlers-Danlos syndrome which greatly complicates how she moves, what environments she can be in, and daily physical activities in general. Khalil, her son, was a foster child that Slice and her husband lovingly took in when he was a baby. Khalil’s infancy stage was her favorite because their physical needs/capabilities were compatible. She got to spend an ideal amount of time with him. They were able to have physical closeness that is important to a mother and child. As Khalil grew up and entered his rambunctious toddler stage, she was not able to continue that level of closeness. More and more Khalil was mainly out of the house. As most of us know but do not acknowledge, a lot of what being a mother can be is typically emphasized on physical capability. Slice’s illness brought on a feeling of imposter syndrome because she did not meet that image of “mom” we so often see. However, she reminds herself of two important things. One, Khalil will get older and become mentally/verbally mature. He will begin to understand his mother more and her needs, as she will with him. Their bond will only grow stronger. Two, she has almost mastered the emotional and mental aspects of parenting. That is, to support, listen, and care for your own child’s mental well-being.  

Quotes: 

“Fortunately, love isn’t a collection of capacities, of practical contributions. My love isn’t diminished by my inability to carry my son up the stairs, just as it isn’t diminished by the fact that I didn’t carry him in my uterus.” (Pg. 132) 

“He knew I was there for him, even if my body wasn’t.” (Pg. 133) 

“Years of restricted movement have trained me to attend, to slow down, to savor.” (Pg. 132) 

This one made me tear up in the best possible way. Not because I felt sad or inspired. I felt that for the first time, I was hearing a parent embrace the importance of emotional connection with their child. As mentioned previously, we tend to focus on the physical. Playing games with your child, taking them to fun places, and having nap time. It’s not that any of that is unimportant, rather there comes a point where that child grows up. Kids who do not feel emotionally safe and supported by their parents will not get on well later in life with processing difficult things. Another part of Slice’s piece I liked is how she defined what love is not. Love can never be restricted to the body when the mind within can do so much without needing every function of the body. You don’t physically see love, you feel it.  

Being, Becoming, Doing, Connecting: A Review of “Disability Visibility”

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Disability Visibility: First-Person Stories from the Twenty-First Century may be over 300 pages, but is among the faster-paced books you will read this year. Opening with an introduction by the collection’s editor Alice Wong, Disability Visibility features the writing of 34 artists, scientists, devout worshippers, authors, critics—sharing their insights on disabled life, activism, and community. Each chapter falls between two and ten pages of light autobiographical prose, and although each is unique in its own aspect, the variety of perspectives come together as a vibrant mural to prove that disabled never equals defective, and that wellness is both personal and relative.

Examining the four subheadings of the text— Being, Becoming, Doing, and Connecting— gives a fuller picture of the aim of Disability Visibility, a narrative documentation of each author’s journey from invisibility to proud self-embodiment. Each writer begins from the circumstances of their life, and choose a true personal story which best illustrates the complex intersections of their disability to their social life, relationships, employment, and aspects of identity (sex, gender, orientation, race, class, etc.). The way that the world reacts to disability is centralized among these, because issues of accessibility begin with the design of our society. Reyma McCoy McDeid, an autistic treasurer and author, shares on page 220 (a chapter entitled “Lost Cause”) that once she disclosed her neurodivergence at the disability advocacy center where she worked, the atmosphere changed drastically. “My coworkers, all passionate about serving people with disabilities, did not appreciate having a disabled coworker.” She was repeatedly discouraged from running for office after disclosing her neurodivergence at work, but this did not stop her.

So, it’s not just stigma and self-confidence; ableist rhetoric leeches into the public mind and informs our definitions of health, beauty, and even life itself. These perceptions can be positively and negatively biased, but almost always come from a place of assuming nondisability in society. Ariel Henley, the author of “There’s a Mathematical Equation That Proves I’m Ugly—Or So I Learned in My Seventh-Grade Art Class”, provides an unusual example: using the Golden Ratio to determine objective beauty on a ten-point scale. She writes on page 61 that “Never had an individual been ranked a perfect ten, but still we lived in a society that found the need to measure and rate and rank and score.” These measurements of the face and body belie measurements of self-worth, incredibly damaging for a young disabled girl who already feels too noticeable. On the converse, though equally bizarre, page 24 of Disability Visibility’s first chapter, “Unspeakable Conversations” by Harriet Mcbryde Johnson, describes the way that positive biases can be equally confusing and degrading. “There is also the bizarre fact that, where I live, Charleston, South Carolina, some people call me Good Luck Lady: they consider it propitious to cross my path when a hurricane is coming and to kiss my head just before voting day.” Can you imagine being kissed by a stranger on the street, and being told that the assault counts as a favor towards their preferred candidate? This is the power of Disability Visibility; it puts you in someone else’s shoes, and for a few pages, you experience life in tandem with the speaker. The benefits in perspective are enormous. 

So, this book is for you if disability is present in your life, and this book is for you especially if it is not. The great advantage of Disability Visibility: First-Person Stories from the Twenty-First Century is that it is an ethnography which reads like a diary. In other words, this book is for graduate-level reference, and this book is for high school libraries. It’s not necessarily scientific, and the writing style rarely strays from personal narrative, but this holds a power of its own because each piece has its own voice. In short, if you’ve ever wondered how to discuss, describe, and include disability in your conversations with compassion, please read this book.

An anthology of hidden realities: A review of Disability Visibility by Alice Wong

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“There’s something horrifying about realizing people don’t see you as an adult when in fact you are an adult.” (135, Sjenneson)

The quote above comes from “How to Make a Paper Crane from Rage”, a contribution to Disability Visibility by Elsa Sjunneson, where Sjunneson discusses her experience with her anger and how the world defined her by her emotions as invalid. This just one of many personal narratives documented in Disability Visibility. Each entry captures the distinct views and life experiences of its author, allowing a small insight into their reality. Most entries are around 3-5 pages long allowing the reader to sit, enjoy a short story, and have time to reflect upon what they just read without information overload. This is a very effective presentation for the narratives included, as allows the audience to digest each message and work through their personal thoughts on the issues discussed.

Disability Visibility is Academic yet Personable. This is the books strongest feature. The reader feels like they are being talked to by a person passing by on the street. Each author has their own tone, but none are extremely clinical or academic. The anthology allows each featured author a moment to shine, to take up some space. “Taking up space as a disabled person is revolutionary” (115), as Sandy Ho states in her chapter (“Canfei to Canji”). The reader gets a chance to know them, hear their views, to humanize these voices. This allows a greater retention of each author’s messages, as one feels like they are personal being talked to and can find some familiarity in a topic foreign to many. This also allows for even the most skeptical of readers to find something to relate to, something they will engage with.

The beauty of Disability Visibility is the way every narrative differs from each other, but clear themes appear as one reads the book. Not all the authors have the same world views making these themes much mor meaningful. Sentiments such as “…. for me to claim the label, when I didn’t feel “disabled enough”, felt disingenuous” (56, Eric-Udorie) are expressed multiple times in completely different context. On the other side of the coin, many times a sentiment like “Crip space is unique, a place where disability is celebrated and embraced… (273)” appears. This wide swing in visible opinions allows the reader the opportunity to build a well-rounded picture of disability. This is the main reason I would suggest this book to people, especially if they have little experience with disability. I would also like to say it has been very enlightening as someone with some experience. Learning about struggles others have faced and how they work around those struggles has been inspiring and view-shifting. Over all I would rate Disability Visibility , 4.5/5.

Readers will find overall the personal experiences are mildly alarming at the worst. However, I can guarantee there will likely be one or two entries that are disturbing or triggering. These chapters will probably be different for every person. So, I think some cation is healthy when reading certain chapters. Though, if possible, I think everyone should try to read those chapters.  I have found that each chapter is impactful in its own unique way, and by skipping some you are missing out on a journey. That being said mental health and wellness is a bigger priority than learning a new perspective.

Furthering Conversations: A Review of “Disability Visibility”

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“Disbability Visibility” is a compilation of essays and short-stories from the 21st Century written by people with disabilities. Compiled by editor Alice Wong, the essays and short stories feature narrative glimpses of the lives of each author, from childhoods to relationships, from careers to activism, each story has follows the thread of disability into the intersections of everyday life. “Disability Visibility” is an anthology written both for the people who have never felt seen, and for people who want to expand their horizons and understand the complexity of our human nature. It is a chance for the authors to amplify their voices, their impassioned words giving insight into our perceptions and the reality of just how every experience is unique. It is a chance for the reader to grow in empathy and understanding towards your neighbor, and a must read for those who want to explore disability and intersectionality from a lived-experience perspective.

Authors like Shoshana Kessok, who walk the reader through the complexities of the medical system and the misguidance of bipolar disorder, help readers to get a glimpse of the fallacies of healthcare. But Kessok doesn’t leave the reader with the complications of getting your medications adjusted and the never ending appointments. Rather, they acknowledge that once you receive the help you need, your life can stabilize, and reaching out for help is always better than suffering alone. They talk about the interweaving of mental illness with creativity and how so many people feel that real artists have to suffer (mentally, physically, emotionally etc.). Kessok says, “I read books about people theorizing about the connection between mental illness and creativity and I shake my head. I don’t need to know the connection, because if there is one, it doesn’t matter to me. I take my medicine and work my craft at the same time because I don’t need to suffer as an artist” (Kessok, 187). Stories like these battle against society’s preconceived notions and reveal the truth about mental illness, while also serving as cautionary tales of putting too much truth into stereotypes.

Each story is unique, as unique as the author who crafted them, and stories about feeling different are not uncommon. June Eric-Udorie speaks about how having nystagmus made her feel broken, always praying for healing that would never come. In “When You Are Waiting to Be Healed”, she acknowledges the desire to be without disability and the sometimes confusing choice one can make when coming to terms with the identity of “disabled”. But she also acknowledges the joy of understanding yourself. “I come to church happy in the body I exist in; I come to church knowing that I am not a mistake waiting to be fixed,” June says (Eric-Udorie, 58). June gives the reader an understanding of growth and healing beyond definition, providing concepts that may fight with the reader’s previous conceived notions of healing.

This anthology is a series of love letters to the understanding of yourself, a celebration of difference, and a reconciliation between the past and the present. It proves that there is no predetermined way of living, that there is a freedom in expression and value in being in relationship with others who share a thread of understanding. “Disability Visibility” works around the reader’s biases, scraping away the force-fed egregious narratives fed to us by society and replacing it with bubbles of the lived experience of people with disabilities through all aspects of life. Ariel Henley, whose essay titled, “There’s a Mathematical Equation That Proves I’m Ugly”, which redefines our understanding of beauty, sums up the artistry found in each essay with a beautiful quote about her experience. “But art isn’t necessarily about beauty. Art is supposed to make you feel something, and I began to realize my appearance was my art. My body, my face, my scars told a story- *my* story” (Henley, 46).

A compendium of innovation, beauty, and wholeness, “Disability Visibility” is a quick read, offering readers a chance to see themselves and to see the lived experiences of people with disabilities. This book shows readers how empathy is the answer, and how we get there is by viewing each and every person, just as they are, seeing the value in all of our varied experiences. 5/5

Falling/Burning

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Falling/Burning // Shoshana Kessock Summary:

The chapter I read was written by an author with bipolar disorder. They walk the reader through the complexities of the medical system as a creative with a mental disability. The chapter is an anecdotal narrative about their life, starting from a younger age, flying and falling and soaring and burning through the days. They share their experience with therapists, then psychiatrists, medication, then lack thereof. They sought out information about their disorder and were misinformed, under-informed, and poorly guided. The crux of the chapter is when the author explains their devastating ten year season from 2002-2012, which was ultimately “resolved” thanks to proper information and cautiously prescribed medicine.

A few quotes from the ten year period:

“Everything here is… hard, and bright, and violent. Everything I feel, everything I touch… this is hell. Just getting through the next moment, and the one after that”

“That was the illness talking”

Summary of Rhetorical Situations and Their Constituents // Keith Grant-Davie:

Keith Grant-Davie outlines what makes up a rhetorical situation in their essay, Rhetorical Situations and Their Constituents. They begins by elaborating on the wholeness of a rhetorical situation, then breaks down that wholeness into exigence, rhetor, audience, and constraints. Exigence, as defined is, “an imperfection marked by urgency. It is a defect, an obstacle, something waiting to be done, a thing which is other than it should be”. Exigence exists in a multiplicity. It begs to ask the questions: what is the discourse? Why does it exist? What should it accomplish? Rhetors are not as simple as one would think. Some may be unidentifiable and are complex and multifaceted by nature. Audience, similarly, to rhetors, could be anyone. Anyone that could potentially be the audience, is. The role of the audience is persuaded by the rhetor and discourse, but at the end of the day, it’s still a conversation and the audience is a prevalent part of the rhetorical situation. Constraints are, “persons, events, objects, and relations which are parts of the situation because they have the power to constrain decision and action needed to modify the exigence.” Constraints are preset circumstances/models that a rhetor and audience are held to.

“…where the aim is not victory over the opponent but a state of identification, where writer and reader are able to meet in the audience identity the writer has created within the discourse” 

In Reflection of both readings:

I found this chapter to be a accurate testimony to how mentally disabled folks navigate through life, in relation to creativity, medication, school, motivation, and frustration. It’s a tale so personal to this author, but true for many others. Through the scope of a “rhetorical situation”, the rhetors Shoshana Kessock, Alice Wong, and potentially others I am unaware of (are unspoken), are constrained by the length of a chapter, the english language, the obstacles of presenting a story as a disabled person, and the audience‘s knowledge regarding bipolar. I believe the audience extends much further than myself. The rhetorical choices made by the author lead me to believe that they hope struggling disabled authors to read their story. They persuade inspiration and hopefulness.

“Unbroken: Alice Sheppard’s Revelations in Dance”

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Title and Author: “So. Not. Broken” by Alice Sheppard, from Disability Visibility

Objective Summary: 

Alice Sheppard begins her short autobiographical piece “So. Not. Broken” from Disability Visibility by sharing a joke with her physical therapist as she arrives at an appointment. “I’m broken”, she says, but it has nothing to do with her disability (182). As a choreographer and dancer, Alice is used to living with a degree of physical brokenness, but not in the way her nondisabled audiences may immediately assume. “Many nondisabled people attribute a degree of brokenness to disability”, she writes, adding “it arises from the medicalization of our bodyminds” (182). For Alice, learning how to dance involved figuring out her body through the mechanics of her crutches, and her chair, as well as without them, leading her to new capabilities in performance. To Alice, the chair is a part of her body, because it becomes part of her embodied space, in dance and in daily life. She shares that her perspectives in dance were not just those of a disabled person; but also of a woman, and of a black woman; and she believes all of these intersections of identity impact embodied experiences in real ways. The “expressive capacity of bodies”, Alice writes, is surely enhanced by a variety of embodied forms, and she admits her new approach to the body as a whole gives her hope for a bright career future.

Quotations: 

  1. “My very first problem as a dancer was figuring out my chair. I had to learn how to move in it, of course, but I also had to understand what it meant as a black woman to use a chair onstage, in the studio, and in the world”. (page 183)
  1. “When I discovered the concept of embodiment—a word I use to describe the way in which my body takes shape and form—I made another breakthrough: My chair is my body.” (page 183)
  1. “My crutches and chair are not tools that compensate for my impairment. Nor are they simply devices that I use for traveling across the studio. I understand these starting points as embodiments, each of which has different movement possibilities.” (pages 183-184)

Takeaways and Reflection:

Clearly, Alice is speaking as someone with lived experience in multiple marginalized identities, and she centralizes the way those intersect in her life through her dance and stage performance career. The narrative does meander a little to fill in the details of her personal life, but one main claim she makes is that although brokenness and disability are affiliated through the medicalization of the American bodymind, this is both a harmful and inaccurate connotation which should be abandoned. It’s evident through Alice’s experience as a choreographer that mobility assistance devices are also a part of embodied selves, and can absolutely participate in the dance. In fact, she proposes that these devices can even expand the creative experience of dancers once integrated into routines. Alice’s narrative of her journey towards a greater self-understanding could be useful to many disabled and nondisabled in her audience, especially to those that might feel drawn towards athletic pursuits. At the end of the day, everyone must accept their body as it comes, because looking at the self as a lesser version of another person just seeds feelings of inadequacy and self-loathing.

A Supernova-Sized Burst of Accessibility: RAB Response

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  1. “How a Blind Astronomer Found a Way to Hear the Stars” by Wanda Díaz-Merced from Disability Visibility

  2. Summary:

Wanda Díaz-Merced’s short personal narrative, “How a Blind Astronomer Found a Way to Hear the Stars” was originally performed as a TedTalk in February 2016. Beginning with a description of how supernovas work, Díaz-Merced explains how the star she was studying at the time she lost her sight, became a magnetar. Detected by their gamma-ray bursts, astronomers are able create pictures of the most energetic part of the supernova explosion. Something important to understand about them is that people are unable to see these events occur with the naked eye because we can only see a small part of the electromagnetic spectrum. Díaz-Merced emphasizes this because the only reason why astronomers create visual constructions of supernovas is because its a common and generally easy way to interpret them. That is, if you’re a sighted person.

When she lost her sight, Díaz-Merced thought that she might have to leave her field because of the lack of accessibility. Instead, she decided to make the work accessible herself, so she could continue to study the work she loves. Díaz-Merced. Because all light is a curve which can be turned into a table of numbers, those numbers can be translated into sound. Her and her collaborators worked really hard on this sonification project that had never been done before, and now “she is able to do physics at the level of the best astronomer,” (Díaz-Merced, 170). After telling her story of accessibility innovation, Díaz-Merced bought the TedTalk to a close with a last thought for the audience, which is that anyone can develop a disability in their lives, and most people eventually do. However, this doesn’t mean people should be excommunicated from their area of work. Scientific fields in particular have many systemic barriers in place that aren’t keeping up the outer world’s increasing focus on accessibility.

3. Quotations:

-“If people with disabilities are allowed into the scientific field, an explosion, a huge titanic burst of knowledge will take place, I am sure” (Díaz-Merced, 173).

-“I think science is for everyone. It belongs to the people, and it has to be available to everyone, because we are all natural explorers” (Díaz-Merced, 172).

-‘While other countries told me that the study of perception techniques in order to study astronomy data is not relevant to astronomy because there are no blind astronomers in the field, South Africa said, “We want people with disabilities to contribute to the field”‘ (Díaz-Merced, 172).

4. Reflection and Review:

I found the last quote I listed to be particularly interesting because when the various countries Díaz-Merced offered her new techniques to rejected them because there was no perceived need, its so clearly obvious that the reason there aren’t blind astronomers is because of the lack of accessibility which she was attempting to correct. It reminds me of a piece I read once about planes that have seen combat, where when the surviving plane came back from battle, engineers looked at where the damage on them was, and wanted to reinforce those areas. However, eventually someone pointed out that these were the surviving planes that they were looking at, and what they really need to do is to reinforce the areas of the planes where there was no damage, because those were in fact the places that if hit, would send the plane spiraling to the ground.

My big takeaway from this piece is that organizations can’t look at the people who maneuver easily through their field to decide how to accommodate people with disabilities, because nondisabled people are the ones the organization was built to cater to. They have to look to the people who are being left behind. They need to listen to them and their needs, and then work to create space for them, by either allowing disabled people to innovate the system themselves like Díaz-Merced, or working in groups that have direct contact with people with disabilities and prioritize their thoughts.

Here’s a link to the TedTalk:

Wanda Diaz Merced: How a blind astronomer found a way to hear the stars | TED Talk