Category: Disabled voices

Disabled voices, Solidarity

“Everything in Nature Goes in Curves and Circles”: Native American Conceptions of Disability [Repost]

As Kim E. Nielson notes in A Disability History of the United States, Native American conceptions of disability are unique in that they don’t really exist. There is no language equivalent or even translatable concept for the word disabled, the closest translatable phrase is simply “being different.” … Native Americans do not prescribe to ideas of othering simply because there can be no other in their concepts of reality. Nature is constantly changing so “normalcy is an ever changing process of coming to balance.” Disability is therefore seen as a difference that can be integrated into society. Disability is “only an element of the individual’s existence, not the defining element.”

This week my husband and I are celebrating our five-year anniversary on the beach boardwalk in Ocean City, MD! You can find me listening to my copy of Kim Nielson’s A Disability History of the United States.
Here’s an interesting essay introducing how disabilities are conceptualized in Native American culture.

“Everything in Nature Goes in Curves and Circles”: Native American Conceptions of Disability

Disabled voices, From the Disability Wisdom Community

From the Disability Wisdom Community: Is There a Disability Culture or Cultures?

This post features another discussion we had on the Disability Wisdom Discussion GroupA group member asked whether or not there is a such thing as disability culture, or impairment subcultures such as “blind culture” and “autistic culture.” The question generated a variety of opinions which underscore the complexity of the issue:

  • I intuitively feel like there is a blindness culture, although I’ve never quite been able to pin down what that means. I’ll give this some more thought.
  • I feel like there’s a blindness culture, like,an appreciation of non visual techniques and beauty. I have a hard time connecting with it a lot of the time.
  • First time I’ve heard of it.
  • so… Wherever there is a group of people, there is a culture or subculture. Families have their own subcultures. Companies have their own cultures. Groups of people who get together to discuss books have their own subcultures.If there are groups of blind people, then of course there is blind culture.

    I think it may be less easy to tease apart what makes it distinct, because unlike deaf culture there are no super easy differences to point to, but that doesnt mean its not there.

  • culture or subculture is the unique experiences and understanding within any group of people, so yes, it may not be as defined, but it exists.
  • I was always led to believe that something could only be a culture if it had its own language/form of communication. Braille doesn’t count because it is simply a different representation of an existing language. Under hat definition no, there’s no blindness culture & the sense of community we feel is a sub culture.
    Personally I’d. Say language is not necessary to define culture & communities can have their own cultures.
  • I am more open talking about blindness concerns around other blind people but I don’t think it is a culture. I think there may have been more of a blindness culture when most blind people attended a school for the blind but that hasn’t been the case for many years.
  • So culture is defined as a group having its own language, customs and religion. Since disability alone does not include these, I argue that we do not have a seperate culture. We are a part of whatever culture we live in. However, there is the disability experience, such as dealing with discrimination, using alternative tools/methods, lack of accessibility, the psychology of being disabled, etc. These are things that able bodied people don’t have to think about or deal with, except maybe the discrimination part. So while we live in the same culture as those around us, our experience can be different because of disability.
  • There is definitely autistic culture. It includes mores such as, respecting everyone, only 1person talking at a time, asking pronouns, stimming openly, asking before touching anyone, asking what someone is feeling and not relying on their expressions, giving people lots of space, being patient as people communicate, and being really honest. Autistic people are not offended by honesty the way other people are. If I ask you if you like my shirt and you say well it’s the color of bile that’s good to know I hadn’t noticed. I really wanted your opinion. I don’t ask if I don’t want to know things.
  • Personally, I do think that blind people have their own customs, which falls under the scope of being a culture. Saying your name instead of raising her hand to speak, announcing yourself when you enter a room in some places, some stims, and using technology bye unabashedly having your voiceover off silent or earbuds not constantly in your ears to hide the sound are part of the culture. They dislike of being touched without warning or permission is something that I think we share in common with the greater disability culture. I was pointed to the same very narrow definition that [group member] discussed while I was in middle or high school, but I personally do not agree with it. I think that culture has evolved to mean something very different in today’s day and age, and that definition just doesn’t suffice anymore.
  • If there were epileptic colonies, separate schools we had a culture. I’ve often wondered what happened to the former ‘program’ of an elementary school I had attended. The program used some now dated language. But I often thought it was ‘appropriate’ the elementary had sea paintings on the walls of that program when I had hydrocephalus (water on the brain) as one of my conditions. It made me feel beautiful as a little girl.
  • I think people often confuse the word community and culture. There are many many different communities inside a single culture. Just look at the United States. However, if you narrow down by culture, the number gets exponentially smaller. Same with disability. There are many communities full of people with disabilities, including this one. Culture wise, I don’t think so. In order to have culture, you need to have language, social norms, traditions, and many other things that I am forgetting right now. We, as Blind individuals, don’t have a language. Braille is just a code. It can be applied to any language. We do have slang, but every community has some sort of slang. Just look at the corporate or educational community as an example. We may have a few social norms, like don’t grab a guy dog that’s not yours, but in general we live by the same social norms as the rest of the different cultures that we are part of. And finally, we don’t have a lot of traditions that we share amongst each other. We may have a summer convention, but not everybody participates in that.
  • so if language determines a culture, for those who do not know this, but persons who are DeafBlind might use “ASL” but there is TASL, which is the tactile version, is it different from ASL yes, does it have its own unique signs and ways of conveying information in a tactile version, yes. And PT protactile, is its only expression of language too. Yes, I realize that the question was targeted towards the blind community, but as a deafblind person, not only do I have one foot in the blind community, but in the deaf community and a third in the deafblind community. so in essence DeafBlind is a sub community of the blind and deaf community. Yes, we have our own customs, our own norms, and so on.
ableism, disability etiquette, Disabled voices

Is This OK with You? [Reblog]

This week’s repost is a poetic post from BlindBeader’s “Life Unscripted” blog. BlindBeader details the various reactions others have to our disabilities, repeating the refrain, “Is this OK with you?” From being disregarded as a job applicant, to being talked over at a restaurant, to being told how to think about one’s own disability, we are often expected to accept treatment that most other people would never be OK with. This post gives us the energy to say, “it’s not OK with us,” and that is the first step to taking action.
Is This OK With You?

Disabled voices

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

Disabled voices, Past, Present, and Future, research

“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
www.facebook.com/Criptiques