disabled narratives

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.

Child Abandonment: How Jerry’s Orphans Sparked Thought

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“The Kids Are Alright” is a short documentary filmed with the intent of showing the efforts of “Jerry’s Orphans”, a movement created by Mike Ervin. Ervin began the movement based on his experience as a poster child for the Muscular Dystrophy Association (MDA) and their yearly telethon. Ervin and his friends, other people with muscular dystrophy or close ties to it, began protesting Jerry Lewis’ yearly telethon that was produced by the MDA in the early 1990’s. Their efforts remained unrecognized and scorned even after sharing their personal experiences and how the telethon and the MDA were hindrances to their experiences, rather than boons.

During the documentary, Ervin explains how early TV icon Jerry Lewis created slanderous narratives toward the muscular dystrophy community and how the MDA’s efforts are more for personal gain than the gain for people with muscular dystrophy. When Lewis called those with the disability “half a person”, Ervin, born with mild muscular dystrophy, was outraged and disgusted that someone with no experience could ascribe such a concept to his life. Ervin and his friends, nicknamed “Jerry’s Orphans” as a satire of “Jerry’s Kids”, call attention to the fact that the MDA, TV station, and the volunteers involved with the yearly telethon have no right raising money for an effort that will not directly affect people with muscular dystrophy. Their pleas for people to stop pitying them and to actually learn about where the money raised by their efforts actually goes often were brushed aside. Audiences could not imagine why people who live with muscular dystrophy would be so against an organization working to fund a cure.

Those outside of the muscular dystophy community do not understand what it is like to live, and to thrive, with the condition. Volunteers for the telethon believe that they are raising money to find a cure, to put an end to this genetic disease, an act that they believe is charitable and good-natured. However, the constant dehumanization put forth by the MDA and its constituents remained an active agent of harm against people with muscular dystrophy. This film challenges the audience perception of these mass fundraisers and organizations that are often run by people with no ties to the disease. Jerry’s Orphans ask that instead of searching for a cure, we might instead start developing accommodations and changing the narrative of how we view people who have visible, or invisible, disabilities.

While “The Kids Are Alright” pulls no punches describing the affect of years of dehumanization from the MDA, it sparks a powerful thought that audiences should consider: am I listening to narratives of people with first-hand experience or am I trusting in pseudo-benevolent organizations with ill intentions? The film can be viewed for free on Ervin’s website, earning it a 5-star rating for accessibility.