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Dark Humor, Disability, and Community Coping [Reblog]

“If we don’t laugh, we’ll cry. So why not laugh? It may not be funny now, but it will be one day. I think. I hope, because sometimes, hope is all we have.”

A few years ago, I was having dinner with two of my blind friends. We started trading stories of times when we struggled to use basic amenities while staying in hotel rooms alone. Struggling to distinguish between the regular and decaf coffee without reading the labels, or to find the climate controls (which were conveniently on the far opposite side of the room from the air vents). I shared the story of the time I was staying at Gallaudet University, and I couldn’t figure out why I could hear nothing on the TV but static. I called for help, only to be told that I’d accidentally placed the television in a silent mode for deaf viewers. Another time, a power outlet in my hotel room appeared to be broken, and after several days and having an electrician look at it, it turned out that the outlet only worked when the room lights were turned on-and as a blind person I’d missed that fact.

As my friends and I shared these stories, we began to laugh. One person would laugh, which would make the next person laugh harder, and so on. When I finally caught my breath, I thought about how a bystander probably would have no idea why we were laughing so hard about bumbling around in a dark hotel room trying to use the TV or the hair dryer. My husband would probably only somewhat get the joke. To most uninitiated sighted people, the situation would be sad or strange, but to us it was hilarious.

But what happens when a disability-related situation is more than just an inconvenience? What about the times when we encounter discrimination, hostility, abuse, extreme physical pain, a threat to our survival?

As this blogger suggests, it may be in the most serious disability-related situations when it is most imperative to laugh. Because if we don’t laugh, we’ll cry instead. And through laughter we can find hope.

Further, the humor that disabled people share with one another is borne out of our shared experiences. It arose out of segregation and is often a backlash against a world that tends to exclude us even today. Knowing I have a community who will laugh with me when I face discrimination gives me the confidence to keep trying.

Dark Humor, Disability, and Community Coping

Braille, Disability Community Leaders

In Honor of World Braille Day, Part 2

Last week, I wrote about the invention of braille, and early controversies around its use. Today, nearly all countries use braille as the international standard of literacy for blind people. Yet we still live in a braille paradox: Braille is more available than ever before, yet less people are using it.

On one hand, braille is easier to produce and distribute than ever before. Modern technologies make it possible to emboss a braille book (once it is digitally formatted) in a matter of minutes. Some blind individuals also use portable braille displays, which contain a single row of pins that can change shape to represent braille letters. The user can scroll through a document using a joystick or thumb keys to advance from one line to the next. Braille displays can interface with mainstream computers or mobile devices to provide access to the screen in braille. There are also PDA-like devices that integrate a braille display and keyboard along with a basic processor, enabling the user to write and edit documents in braille before transferring them to a computer. Using these modern devices, blind individuals can have instant access to digital books in braille. Current braille technology has some limitations; it is too expensive for many individuals, can only display one line at a time, and cannot yet display tactile diagrams. But the technology is facilitating access to braille like Louis may never have dreamed of.

Despite these advancements, the number of blind schoolchildren learning braille is decreasing, at least in the United States. When most blind children went to segregated schools, about half were reported as braille readers. But in recent years, some researchers estimate that as few as 10% of legally blind children (in preschool through grade 12) are primarily braille readers. While some of these students do not read at all due to cognitive disabilities, a substantial percentage of blind students are either using their limited vision to read in print, or using only audio (through recorded books or text-to-speech technology) to read. A variety of reasons have been cited for this change, many of which are systemic: braille teachers are scarce and have high caseloads; many braille teachers do not know the code well themselves; and school districts may not be able to pay for enough braille teacher hours to give students adequate instruction. However, a number of myths about braille still persist that may also explain at least some of the decline in braille literacy. I will address some of the most common myths below.

Myth: Braille is hard to learn. Only the brightest students will be able to master it.
Fact: Braille is an extremely simple code. There are only 64 possible symbols that can be created in braille, so there is a high level of redundancy (e.g., a lowercase a, capital A, and the number 1 are the same symbol, with a second symbol preceding the capital or number to distinguish them). In braille, an a is an a is an a. There are no differences in font or creative ways of writing. I find print to be a much more complicated system, with different fonts, block vs. cursive letters, and large differences between languages. It is true that the contracted form of braille involves some additional learning, but if that learning happens early, many children master contracted braille at around the same age that their sighted peers master print. Students with all kinds of learning, cognitive and physical disabilities have learned braille, and there are adapted braille codes that can be used for readers with limited feeling in their fingers. In addition, braille is much less mentally taxing than print for students whose vision loss prevents clear, efficient reading in print. Of course, braille can be tough to learn for older children and adults who have already learned print. Spanish was hard for me to learn in high school, but I would never assume that a child growing up in Spain would have a hard time learning to speak.
The family legend is that I learned the alphabet in a day at the age of 3. Learning the contractions took longer, but I know that by the time I started kindergarten I was reading short books in contracted braille. My experience is not unique, either. On the other end of the spectrum, I have met a group of 90-year-olds in Colorado who learned braille and used it for pleasure reading.

Myth: Braille is slow. My child won’t be able to keep up with his classmates
Fact: Over the years I have met dozens of braille readers and observed them reading aloud, or discussed reading speed with them. It is clear that reading speed is correlated with the age of first exposure as well as the number of years spent practicing. I myself can read a hard-copy book at around 300 words per minute, and that speed is typical for those who learn in early childhood. Students who learn later in life tend to be slower readers, although they can build their speed with consistent practice. Instruction also matters, as there are techniques (such as reading with both hands simultaneously) that can greatly increase speed.
A related misconception is the belief that braille readers are slowed down by reading one letter at a time and then stringing those letters together into words. This is true for all beginning readers (in braille or print), but once a certain level of familiarity is reached, braille readers learn and respond to the shape of entire words.

Myth: Braille is no longer necessary, since so many books are available in audio form.
Fact: Sighted people also have access to a growing number of audiobooks and can use text-to-speech software, but no one (to my knowledge) is advocating ditching print. It is troubling when a different standard of literacy is suggested for blind people as for the general population. Written communication is a requirement for all programs of higher education, as well as almost all jobs (including all jobs that require a college degree). Just as it is very challenging for congenitally deaf people to speak orally without hearing speech, it is very challenging for a person who has never consumed the written word to produce it accurately.
When I write, I use my braille knowledge to mentally “picture” the words before I produce them. I have intuitions about how I should use capitalization, grammar, punctuation and correct spelling that are based on my reading experience in braille. Individuals who never learn braille or print don’t have that experience base to draw from.
There are a myriad of other opportunities that braille opens up. Braille can be read in any lighting, even in pitch darkness. I recently led a training workshop where I read my brailled notes while looking up at the participants. In the same week, I read stories in braille to my 2-year-old nephew and used braille labels to distinguish my shampoo from my hair conditioner. My medications and spices are labeled in braille at home. While all of these tasks may be technically doable without braille, they would have been much more challenging. Braille is a critical tool that paves the way for equal participation.

For further reading, check out these excellent blog posts:
Braille Is Not Dead (So Stop Trying to Kill It)
Leveraging Technology to Achieve Greater Braille Literacy

Braille, Disability Community Leaders, Disability history

In Honor of World Braille Day, Part 1

The inventor of tactile literacy, Louis Braille, was born in Coupvray, France, on January 4, 1809. Louis was born sighted, but he became blind when, at the age of three, he accidentally poked himself in the eye with a sharp tool from his father’s leather workshop. An infection resulted in both eyes, rendering him totally blind by the age of five.

Louis went to school at the Royal Institute for Blind Youth in Paris. At that time, the only method blind people could use to access the written word, besides listening, was to read books containing raised print letters made out of wood or wire. Such books were bulky and the reading process was inefficient. Louis longed for a tactile reading system that would give him the same efficient access to books as his sighted peers enjoyed in print.

When Louis was twelve, a man named Charles Barbier visited the school. Barbier was working to develop a tactile code that French soldiers could use to exchange secret messages in the dark. Louis was intrigued by Barbier’s code, known as “night writing.” Over the next three years, Louis simplified and standardized the code, and the first braille alphabet was born.

Simply put, all braille symbols consist of dots arranged in a “cell”, or a grid 2 dots wide and 3 dots high. Each symbol is represented by a different combination of dots. There are 64 possible braille symbols in total, including a space (made by creating an empty cell with no dots present). Louis Braille’s code focused on the 25 symbols corresponding to letters of the Roman alphabet (excluding W, which was absent from the French alphabet at the time). The first ten letters are made by combining dots in the upper two-thirds of the cell; for letters K-T, the lower left dot is added to letters A-J; and for letters U, V, X, Y, and Z, the lower right dot is added to K, L, M, N, and O respectively. Some of the remaining dot combinations are used as punctuation marks or mathematical symbols in Louis Braille’s original code. At a later point, the English braille code was modified to turn additional dot combinations into “contractions” that make braille easier and faster to read; for example, the word “for” is written as a single symbol consisting of all six dots. Numbers can be written either by placing a symbol called a “number sign” just before letters A-J (to represent numbers 1-9 and 0, respectively) or by writing letters A-J one dot lower in the cell to represent numbers 1-9 and 0, respectively. A separate code for braille music was also created.

Louis Braille published his first brailled book in 1829. The oldest, most basic braille writing device was a stylus, ironically similar to the tool that caused Louis’s blindness, that can be used to punch the braille dots through a piece of paper. Many braille users today still use a stylus along with a slate, which holds the paper in suspension so that dots can be punched through with appropriate spacing. Modern braille writing implements, as I will discuss next week, can make braille production smooth and efficient.

Although students at the Royal Institute for Blind Youth liked Louis Braille’s code, it was not taught there officially until after his death in 1852. Teachers and principals at schools for the blind in other parts of the world showed a remarkable resistance to adopting braille. In the United States, various other tactile codes were introduced as alternatives to braille. Most of these codes, such as Boston line type and New York point, were written to resemble conventional print. Sighted educators preferred for their students to use codes that they could read and write themselves. Analogous to “oralist” movements emphasizing speech and lip-reading for deaf students, it was thought that blind students should use print-based literacy in order to avoid isolation from the broader sighted community. However, these print-based alternatives were difficult to read efficiently. They were unstandardized, so students educated in one code may have had limited access to books written in that code. Some students at schools for the blind began secretly using braille to communicate with one another. Eventually, the simplicity and efficiency of braille was recognized, and braille was adopted as the international standard of tactile literacy. Louis’s birthday, January 4, is commemorated as “World Braille Day.”

Louis Braille’s biography was one of the first braille books I ever read, while I was still mastering the contractions and building my reading comprehension skills. The picture shows me reading braille (though probably not that particular book) at the age of six.
picture of me reading at age 6
Louis Braille’s life and work made a real impression on me. He was an example of a disabled person who refused to follow the path that society prescribed for disabled people of his time. Instead, he found a solution that made life better not just for him, but for the entire blind community present and future. He used his own disability experience to develop a simple yet elegant solution that has proven itself superior to other methods. The backlash that Louis received is just one example of a trend of nondisabled authorities guarding their power by explicitly or implicitly rejecting disabled people’s leadership in empowering themselves. Today, even though most blind children are no longer educated at segregated schools for the blind, conflicts surrounding the use of braille still rage. I will write more about modern braille debates next week.

We will overcome

Deconstructing Disability from the Cockpit

Photo of me in the cockpit of a 1946 trainer airplane
My husband Jason and I spend Christmas week with his parents in Cincinnati. Jason’s dad is taking flying lessons, and as a holiday gift, he booked time for Jason and me to each take a guided spin on a 1946 two-seater “trainer” plane (an Aeronca Champ). The learner, who sits in the front, shares the controls with an instructor behind them. When it was my turn, my instructor ascended us about a thousand feet above ground, and once we were at a safe altitude, I was able to play with the controls, and could make turns with minimal guidance. I also got to tactually observe how the controls were used when my instructor landed the plane.

As a blind person, I’m legally barred from operating any motor vehicle on my own. So these rare moments at the controls of a motor vehicle (even in a gaming context) have a kind of forbidden-fruit allure for me. And, as we were up in the sky, I reflected on the popular idea that driving a car and flying a plane are considered beyond the outer limits of a blind person’s capability. This made me reflect on the dynamic, constructed nature of the disability concept.

In the United States, a disability is legally defined as a physical or mental impairment that “substantially limits one or more major life activities; a record of having such impairment; or being regarded as having such impairment.” Some of the “major life activities” included under this definition are seeing, hearing, walking, standing, lifting, speaking, learning, or concentrating. Read more about the legal definition here

This definition has always bothered me, and seems inadequate. Who decided that seeing, hearing, walking and speaking are “major life activities?” And how much ableism is wrapped up in that classification?

I consider actions like seeing, hearing, walking, and speaking to be means rather than ends. They are methods of accomplishing higher-order human tasks that can be very effective, but are not essential. Sometimes alternative methods-using technology, creativity, or interdependence-can get the job done just as well. Other times, alternative methods work but have limitations, and there are some cases when alternative methods haven’t yet been dreamed up. Furthermore, each person values some life activities more than others. So, perhaps true disability occurs when a person is blocked from achieving personally important goals (or universal goals, like obtaining food and shelter) because of unmitigated barriers related to their impairment.

I spent much of my childhood engrossed in brailled novels. Today, I spend most of my waking hours with a computer on my lap and an earbud in one ear. Both reading and computer use were once completely impossible for blind people. When Louis Braille (the inventor of braille, whom I will write about next week) was a boy growing up in 19th-century France, he was told that blind children couldn’t read and write, and that was just the fact of the time. Not too long ago, I would have been told that a career working with data was impossible for me. A simple piece of text-to-speech technology means I can pick up a computer without a second thought. In theory, then, there may come a day when a blind 16-year-old happily drives out of the DMV parking lot with the same excitement as their peers. The realm of possibility evolves as innovation reveals the flexibility of human capability.

Disability is a spectrum, not a dichotomy. There are some life activities that may be completely unaffected by a person’s impairment. Others may be affected to a small or large extent. Their ease of completion may depend on the environment; for example, navigating in a power wheelchair on flat terrain may be as or moore efficient than walking, but navigating a flight of stairs, a man-made barrier, becomes a major challenge. Some tasks may be impossible for a person to complete because of their impairment. Sometimes a task is technically possible, but it may cause the person pain or discomfort if done too often. Some people can perform a task on one day, but not on another day when symptoms of their condition are flaring up. Although the dichotomous meaning of disability may be more manageable from a legal perspective, it fails to acknowledge the complexity of disability and the range of experiences between people, or within the same person over time.

There is one more thing worth mentioning. The legal disability definition focuses on what one person can or cannot do in isolation. But through interdependence, we all can do a lot more. During my guided flight, I relied heavily on my instructor’s expertise as well as his sight to navigate and, eventually, find the way back to the runway. Perhaps if I took enough lessons, I wouldn’t need to rely on his expertise anymore. Perhaps I could become a pilot or a captain, and employ an assistant who could give me the visual information needed for the most complicated maneuvers. Most disabled people can achieve a greater range of activities with strategic assistance from readers, sign language interpreters, personal care assistants, or job coaches, to name a few. If our society prioritizes funding to compensate these individuals, then the arrangement becomes one that benefits both the consumer and the provider. That is why disabled activists are so worried about potential cuts to Home and Community-based Supports (HCBS) which allow disabled people to receive needed support in their communities.

So today, I still can’t drive a car or fly a plane on my own. I recognize there are technical challenges, as well as human limitations, that may not make those things a possibility for a long time yet. But I hope that as a society, we will continue to bend the boundaries of disability by thinking creatively and dreaming of a world in which all can perform the “major life activities” that matter most to them. Here’s to a bright 2018.

research

Disability Wisdom Winter 2017 Update!

As 2017 draws to a close, I’d like to share some exciting projects that I’ve been doing with Disability Wisdom Consulting. I publish a quarterly update newsletter to highlight ongoing projects and also to share some resources that might interest readers of this blog. Please feel free to share the below newsletter in your networks.

Dear friends and colleagues:
As always, thank you for supporting Disability Wisdom Consulting. As we come to the end of another year, I want to take this time to share a few updates and resources that you might find interesting. Please feel free to share broadly.

Research Highlights:
Adult Rehabilitation and Employment Survey Series:
Over the past 18 months, I’ve been honored to work with Dr. Edward Bell and Mary Ann Mendez at the Professional Development and Research Institute on Blindness (PDRIB) on a research project. We began by collecting demographic and employment data from a group of about 1,000 blind adults in the United States to look at current employment patterns and factors that were associated with employment. Results from this initial survey replicate previous findings: about one-third of the blind adults who have completed vocational rehabilitation (VR) are employed full-time, with about 20% working in self-employed or part-time positions. Many of these individuals, though employed, are still not earning enough to leave the Social Security Disability rolls. Consistent with past research, we found that having more formal education, using braille on a regular basis, and being a member of a blindness consumer organization were correlated with employment. We also found that individuals who were blind with additional disabilities reported lower employment rates and likely face additional barriers in the workplace. We will be submitting these results to the Journal of Blindness Innovation and Research (JBIR), a peer-reviewed, open-access journal dedicated to publishing scholarly discourse on blindness. Learn about the journal here.
We are continuing this project with four follow-up surveys to ask blind adults in the United States for more in-depth feedback on their experiences with employment, parenting, training and rehabilitation, and psychosocial issues. These surveys are unique in that they include both closed-ended and open-ended questions to describe trends as well as to gather more subjective input from blind individuals regarding barriers and facilitators to participation. It is also unique in that all three people on the research team are blind, and we have incorporated our lived experiences into the design of the survey questions.
The results from the employment and parenting surveys are being compiled and prepared for publication at this time, while the other two surveys are still ongoing. I will provide updates as the results from these surveys are published.

The Impact of Blindness Simulations:
Last summer, I gave a brief talk at the 2017 National Organization of Parents of Blind Children (NOPBC) conference describing my earlier research on blindness simulations. I explain the social-psychological theories underlying this work and a few anecdotes from experiments we conducted to test the impact of simulating blindness on sighted college students’ attitudes and beliefs about blindness. A transcript of my talk was recently published in the NOPBC’s quarterly magazine. Click here to read a transcript of my talk.

Training Highlights:
Tips for Making Images Accessible on Social Media:
Sharing pictures on the Web and social media is easier than ever. When you share pictures of your loved ones, or a digital flyer for your next event, be sure your blind followers aren’t left out of the fun. Check out this blog postto help take the mystery out of image descriptions.

Disability Inclusion Planning Toolkit:
I recently joined the inclusion committee for the Jewish Federation of Greater Washington. They have created an excellent inclusion toolkit that organizations can use to evaluate their inclusion and accessibility. The toolkit contains printable discussion guides, as well as interactive self-assessment tools. Although it was originally created for synagogues, it can be useful to any organization serving the public. The inclusion tool is free and available to the public. Learn more about the inclusion tool here.

Knowledge Translation Highlights:
Research in Focus Series:
I write a weekly column called Research in Focus for the National Rehabilitation Information Center (NARIC) website. Each Research in Focus article is a reader-friendly summary of a recent disability-related study. In this newsletter, I want to highlight two recent Research in Focus articles that I found particularly interesting. The first highlighted results of a coaching program to empower youth receiving “wraparound” behavioral health services. The coaching helped the youth participate more actively in their team meetings, making the meetings a more positive experience for all involved. Principles from this coaching program could be applied to youth participating in education or transition planning as well. Read about wraparound coaching here
A second Research in Focus article highlights data from young adults who are deaf-blind. This population is small and has not been well-studied. The results show that young adults whose parents expected them to find jobs were more likely to find jobs than those whose parents did not. This pattern was especially strong when the deaf-blind adult had other disabilities as well. While this isn’t a surprising finding, it shows that parents can make a real difference in their children’s futures, even (and especially) when the children have complex disabilities. Read about the power of high parental expectations here

Website and Blog Highlights
Check out some recent blog posts:
Learn about the ABCs of good disability awareness, what would really make life with disability better, the benefits of gratitude,and a letter I wrote to my teenage self.

Join the Disability Wisdom Discussion Group on Facebook!
The Disability Wisdom Discussion Group now has over a thousand members from around the world. This group is open to people with disabilities, as well as those who work in the disability field, or who have loved ones with disabilities. Click here to join the group
Until next time,

Arielle Silverman, Ph.D.
Disability Wisdom Consulting
Phone: 240-630-1154
Email: arielle@disabilitywisdom.com
Web: www.disabilitywisdom.com
Facebook: www.facebook.com/DisabilityWisdom
Twitter: @DisabilityWise