For JDAIM: Reflecting on my Jewish Disability Experience

I started my consulting career doing some training work with the Union for Reform Judaism and the Foundation for Jewish Camp. Since February is designated as Jewish Disability Awareness and Inclusion Month (JDAIM), I thought this week might be a good time to reflect on what I’ve learned about juggling multiple minority identities as a person who is both Jewish and disabled

I like to self-identify as being “blind and Jewish since birth” since I consider both identities to be integral to my being throughout my life. Both identities are statistically rare: in the United States where I live, less than 1% of Americans identify as blind, and about 2% of Americans identify as Jewish. Judaism isn’t just a religion; it encompasses a rich culture and community. Disability, too, constitutes a source of cultural identity and community belonging for many of us.

I was fortunate to be involved in both communities while growing up. For the most part, I was included in both communities. I had an accessible Hebrew school experience and a Bat Mitzvah similar to that of my peers. In the blindness community, I never encountered any real anti-Semitism. However, there were a few times when one of my identities led to feelings of isolation in the other group.

For example, when I was attending a youth weekend retreat for Jewish teens once, they took us to an arcade. Between go-carts, bumper cars, video games and laser tag, most modern arcades may as well have a sign saying “blind people need not enter.” I spent most of the night chatting with the adult group leader, who was very gracious, but not something any 14-year-old really wants to do. I was in a group of my fellow Jews, but was isolated by an environment that didn’t accommodate my disability.

Another time, I went to an event put on by the local agency for blind children just before Easter. We were offered a choice between decorating Easter eggs and learning how to make egg salad. Because Jews don’t celebrate Easter, I had no interest in decorating eggs, and I liked to cook, so I chose the egg salad option. I did not realize that I was the only child choosing not to decorate eggs. Again, the result was unintentional separation from my peers, who shared my blindness, because I was Jewish.

In the presence of fellow Jews, I often felt hyper-aware of my differentness as a visibly disabled person. And in the presence of my fellow disabled people, I often felt hyper-aware of my differentness as a Jew. I was always excited to meet others at the intersection (blind Jews), but they were few and scattered. Consequently, especially during my teen years, I began to feel like I was a member of two important but mutually exclusive communities, which seemed to be pulling my identity in opposing directions. To complicate things further, all of my family members were Jewish, but none of them were blind. As a teenager going through the typical developmental process of distinguishing myself from family, I found myself feeling pulled further toward the blind community. I also encountered much more frequent discrimination due to my disabled identity than I did due to my Jewish identity, so I stuck close to my blind and disabled peers in self-defense. But my sense of identity and belonging in the Jewish community suffered.

Working in the Jewish disability inclusion world has been a transformative experience for me. Over the last three years I have met national Jewish leaders who Saw inclusion as an imperative, not just for the benefit of disabled Jews, but for the benefit of the community as a whole. I met colleagues who valued my expertise as a disabled person and involved me in the process of making change, and this catalyzed a personal healing process. I began to recognize my Jewish and disabled identities as complementary rather than oppositional, and to integrate both of them into my being.
Regarding JDAIM, my colleague Lisa Handelman from the Jewish Federation of Greater Washington writes:

As a society, we strive to shift from a focus on kindness to a demand for justice; from the idea that inclusion is about helping others to the knowledge that it is about strengthening the collective; from creating particular programs to making all opportunities accessible.

These words ought to serve as a model, not only for all religious communities, but for all communities bound by cultural, historical, and civic ties. At the same time, disability communities have a duty to recognize the diverse racial, ethnic, religious, sexual, gender and other identities of their members, and how those identities interact with the disability experience to shape their lives.

To hear more on my experience and the challenges of balancing ethnic and disability ties, check out my webinar on the magic of disability communities
Click here to learn more about JDAIM

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“We’re all a part of this movement”: Caitlin Wood speaks about disability justice at the Women’s March

Last weekend, millions of people participated in “women’s marches” around the world. As was the case last year, gender justice was just one of the many concerns on the minds of the participants. On this week’s blog, I want to share powerful words from Caitlin Wood, a disability writer and activist who had the opportunity to address the crowd in Fayetteville, Arkansas. Caitlin teaches us about the concept of disability justice and the imperative for all justice-conscious people to consider the intersections between disability, race, class, gender, sexuality, and other identities as we work for change.

Hello. My name is Caitlin Wood. Thank y’all for coming out today. Thank you to the organizers for having me and for prioritizing the voices of those of us who live our lives on the margins. Thank you Blanca, Autumn and Olivia for ensuring our march is accessible to everyone, and for understanding access is a fundamental justice issue. Listening to our disabled sisters and recognizing the value of our expertise and what we bring to the table is a justice issue. So often, even in social justice circles and events, disabled people are excluded, ignored, or treated as an afterthought. It’s rare we’re thought of at all. It’s even more of a rarity for a disabled woman to have the opportunity to speak her truth into a microphone to a crowd as large as this one. It’s an opportunity I don’t take lightly. So in solidarity and with gratitude to everyone here today, I say thank you.
Disabled people are the largest minority group in the world. We are 15% of the entire population. We are everywhere and yet somehow invisible. We are consistently and routinely missing from conversations about equity and oppression. This is one of the many cruel injustices rendered by ableism.
Many people I talk to have never heard the term. When I speak about ableism, I’m referring to the systemic oppression of disabled people. Ableism, like all types of oppression plays out in many forms. It is overt and covert, macro and micro. It reveals itself in attitudes and beliefs, language and behaviors, and in government policies.
Ableism tells us that to be disabled is, at worst, tragic, deserving of pity, and at best, a personal flaw. That we’re defective in some way. It’s revealed in the avoidance of and heartbreakingly low expectations for disabled people. It’s the refusal to acknowledge and examine nondisabled privilege, and to validate disability as a legitimate identity, and diverse community. It’s telling me I shouldn’t refer to myself as disabled while being unaware that I use that word with precise intent and pride. It’s being taught disabled people must somehow “overcome” our disability in order to be accepted and valued. Instead of being taught to embrace and celebrate this part of ourselves, we’re supposed to hide it, diminish it; to feel shame about our minds and bodies. We are expected to stay silent about our inequities. We are expected to accept the myths of normalcy and independence as fact. We are expected to apologize for our existence. While this is true for all of us, it is especially true for disabled people of color.
Ableism is evident in the disturbingly high rates of sexual violence we experience -7x the rate of nondisabled people if you are intellectually disabled. And this doesn’t take into account those who’ve been institutionalized. There, the rate is higher. It is our erasure from history, and our erasure from the present. It’s our omission from the media and our exclusion from all social spaces. It’s barriers preventing disabled people from accessing a building, a march route or using a bathroom. It’s the callous indifference and dismissal we encounter when we bring up these inequities. It’s devastating cuts to mental health services and targeted assaults on health care. It’s the fact that If I weren’t here today speaking about this into a mic, many would go home from this incredible march never realizing anything was missing. It’s the mass incarceration of disabled people, extreme levels of police brutality and the school to prison pipeline, all of which disproportionately harm disabled people of color, particularly those with invisible disabilities and mental illness.
If you come away from this remembering only one thing, let it be this: *Ableism intersects with, and facilitates literally every oppression possible*. It is gendered, racialized and intrinsically entwined with class. It has been and is used to pathologize black and brown bodies, justify the forced sterilization of women, and classify being transgender as a psychiatric disorder by the American Psychological Association.
We can no longer exclude ableism from conversations around justice and equity. By refusing to acknowledge and validate the importance of disability identity and the divergent experiences it provides, we perpetuate oppression. We repeat our previous mistakes. We operate with an incomplete analysis and miss the opportunity for real change.
We must take an honest inventory of our ableism, with the understanding that while it’s often an uncomfortable challenge to our egos, it’s an integral component of progress.
In the words of black queer writer, Son of Baldwin, “If dismantling ableism isn’t a part of our social justice platforms, then our platforms are suspect.” It is imperative to integrate dismantling ableism into our frameworks of justice. It is essential that disabled people aren’t included simply as a token gesture, but as respected leaders, directing conversations and actions around this topic. We are the experts on our own lives. And we have been fighting for years to defeat our invisibility.
We must redefine as a culture how we view disability itself. We must take the effects of ableism and nondisabled privilege seriously. We must continue to educate ourselves and each other. There are many amazing activists to learn from, particularly disabled people of color who are leading the disability justice movement through compelling art, writing and performance. Leroy Moore and Patty Berne of Sins Invalid, Alice Wong of the Disability Visibility Project, and activist Mia Mingus are just several I admire.
We’re all a part of this movement. For some, marches and crowded events are simply not an accessible option. All avenues of resistance are valuable. All contributions, whether podcasts, letter writing, phone calls, protesting at politicians offices and online marches- are all part of the work. To my disabled family both known and unknown: When ableism lies to you and tries to convince you otherwise, remember: you are powerful. You are valuable. You are important. You matter. Tell your truth. The movement can’t succeed without you. Thank you.

Caitlin Wood is editor of Criptiques, an anthology of writings by disabled people. Learn more at
http://www.facebook.com/Criptiques

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

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

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.