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- Session 3
- Step 1: Formulate a team of curriculum specialists, transition specialists, and cultural brokers.
- Step 2: Convene the team to plan process for integrating culturally-relevant content.
- Step 3: Investigate relevant evidence-based practices.
- Step 4: Select an appropriate curriculum or create one that addresses all dimensions of self-determination.
- Step 5: Translate key topics and terminology into the native language as appropriate in all materials.
- Step 6: Locate resources and materials that will support teachers in implementingthe curriculum.
- Step 7: Find and insert appropriate graphics or work with students to create them.
- Step 8: Pilot the curriculum, soliciting feedback from teachers and students.
- Step 9: Modify the curriculum as needed.
Parent Curriculum - Sessions Session 1 1. Recognize their role in helping their child be successful in school and in life 2. Increase their knowledge about child’s needs 3. Increase their knowledge of self, what strengths they have to offer child, and what they need to build within themselves to meet the needs of their child 4. Increase knowledge, awareness, and understanding of viewpoints of others involved in the IEP process 5. Identify support connections, and use effective problem-solving to make decision. Session 2 1. Increase understanding of students’ rights and responsibilities in school and parent’s rights and responsibilities 2. Increase their use of effective problem-solving 3. Recognize in and out of school that can help their child learn better 4. Increase understanding of resources available to help them support their child’s educational goals
1. Increase their cultural/social capital for navigating the future of their child 2. Increase understanding of how to effectively access and maximize the resources available to them Session 4 1. Increase their cultural/social capital for navigating the future of their child Designing culturally appropriate self-determination curricula for students and parents
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2. Increase understanding of how to effectively access and maximize the resources available to them Session 5 1. Increase understanding of the social and cultural meanings of disability 2. Increase understanding of the laws that apply to disability and special education and how to effectively use these as support resources 3. Learn the content of an IEP
1. Improve preparation for an IEP meeting 2. Use effective self-advocacy for children Following are the steps we recommend to develop a culturally appropriate self- determination curriculum for students.
Identify individuals who can assist with curricular modifications appropriate for your students. These individuals may include teachers, transition specialists, and community members with cultural knowledge, curriculum specialists, and students, as appropriate. It is important that you have individuals who are well connected to the cultural context where your students reside. Elders are often quite knowledgeable and would be appropriate to include on your team.
All members of your team should share a common understanding of the tasks that need to be completed. Assure that the curriculum provides cultural foundations that enable your students to understand how their identity is influenced by their own culture and the mainstream culture. This should include exploration of personal and family values and history, cultural assessments, and culturally appropriate supports. Building upon this foundation the curriculum should strengthen the student’s ability to develop decision-making skills and strategies for communicating effectively in the mainstream culture. These skills will promote improved skills pertaining to Individual Education Plans (IEP’s) and transition planning including goal setting, identifying needed accommodations and resources, and leading team meetings.
Members of the team should become familiar with evidence-based practices pertaining to transition, self-determination, curriculum development and modification, culturally appropriate instructional design, and delivery. Use this knowledge in completing the development process. Your students may benefit from materials presented in certain formats or approaches, based upon their cultural orientation. Step 4: Select an appropriate curriculum or create one that addresses all dimensions of self-determination. Test and his colleagues (2000) outlined eight components that should be included in a self-determination curriculum. These include “choice/decision-making; goal setting and attainment; problem solving; self evaluation, observation and reinforcement; self advocacy; inclusion of self-directed IEP; relationships with others; and self awareness” (Test, p. 48). A wide range of self-determination curricula for students exist, and a number of those have been field-tested and critiqued in the literature. You may also want to design your own curriculum, although this process can be time intensive. Step 5: Translate key topics and terminology into the native language as appropriate in all materials. Karen L. Applequist, Kelly D. Roberts, Hye-Jin Park
326 Translating core concepts into their native language will enhance your students’ understanding of critical constructs related to self-determination and transition planning. Figure 1 illustrates translations of a lesson for Native Hawaiian students. You may want to adjust the terms you translate if your students are more acculturated or are not fluent in their native language.
This step is particularly important if teachers are not very knowledgeable about the cultural heritage of their students. Additional articles or visual materials will enhance presentation of lessons in a manner that is culturally appropriate. This step is also important to consider after piloting the curriculum and reviewing feedback from students and teachers. Step 7: Find and insert appropriate graphics or work with students to create them. Graphics of cultural symbols, depiction of familiar settings, people, or activities and geographical representations are important additions to the modified curriculum. For example, graphics for the student curriculum for Navajo students featured cultural art, photos of traditional homes, and members of their tribe.
You can choose to solicit feedback from students as you progress through the curriculum, or wait until you have completed all of the units. We met with both teachers and students discuss their perspectives of the units and lessons. Teachers may want to take notes after each unit to note possible changes and to track what went well.
If only minor changes are needed, this can probably be handled by one or two people. It may be necessary to re-convene your committee to discuss further curricular modifications. A similar approach is recommended for developing a parent curriculum. Identify a team of individuals with expertise in the cultural beliefs and practices, educational curriculum development, and transition. A cultural broker is selected who is a member of the community who is also a parent of a child with a disability. The cultural broker is trained to establish personal relationships with other parents and work with them in identifying and resolving conflicts and misunderstandings that may be hindering collaboration with professionals. The cultural broker will meet with a group of parents and introduce cultural activities honoring cultural traditions and facilitate a respectful group setting in which parents can learn more about their role in transition and student- directed IEPs. The team identifies appropriate cultural activities for sessions establishing a safe and welcoming environment that would encourage parents to make meaning of their roles and contributions in supporting their children within their unique cultural contexts. For example, Native Hawaiian parents make a lei, Alaskan Native parents make a song and dance, and Navajo parents make a cradle board. Native language is used as appropriate to represent different concepts. For example, native words for collaboration may be more meaningful to participants. Following are the steps involved in the Session 1 activity for Native Hawaiian parents. Notice how self awareness is promoted through the shared activity (making the lei) and the use of Native Hawaiian language and constructed meanings. The following is a sample activity for lesson 1 of curriculum for native Hawaiian parents: Designing culturally appropriate self-determination curricula for students and parents
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1. Pule (prayer) 2. Discuss the lei as a metaphor for family empowerment. 3. Provide materials parents will need to make a lei (string, needles, flowers, or ti leaves). a. Discuss the representations of each element of the lei: Talk story about family genealogy, and personal narrative. Explain the ‘lei string’ or the ‘ewe’ umbilical cord to demonstrate how everything is connected together. How the ‘ewe is our connection to the past, present and future with family and where we live (our sense of place). b. Ask participants to identify and describe their place/relationship within their `ohana (extended family unit); relationship to and with their kupuna (elders), who they are accountable to and responsible for and their sense of place. (This may be done at home with a graphic outline/guide to bring back for the next session). c. Discuss mookuauhau (genealogy) because that is our source for what we know today, for what our kuleana (personal responsibilities) is, and for further perpetuation what ispono (our sense of order, balance, and doing the right thing). d. The aina (land) and our sense of place help us to connect. Give overview of how Hawaiians viewed their environment. This overview is important to give personal power to the parents. Is the environment inanimate or animate, living or dead? It’s alive. Hawaiians gave names to everything (land, wind, rain, cloud, and ocean, and plant) to personalize , to acknowledge their life essence. From the time you are born, respect for the environment translates to having respect for other things, like one’s social environment, spiritual environment, etc. 4. Instructions: Participants will select their materials, and they will prepare their materials (cut string/cord, select flowers) a. Discuss building awareness by looking at differences. The reasons Parent A selected a variety of flowers, versus Parent B possibly selected only one type of flower, or the string/cord length. b. Relate these differences to viewpoints, values, school, and home cultural values. 5. The group can choose what flowers or pattern (try to have at least 3 types of flowers) to use. a. Relate these choices to problem solving and decision-making. 6. Collect the material the participants prepared and hold them in a lei container for the next class activity (only necessary if utilizing the curriculum over many sessions). 7. Pass out handouts for activities participants should research/do and bring back to next session. 8. Start to teach parents the lei chant. Teach parents that they have a unique voice. Manakaleo- power in their voice. I kaolelokeola, i kaolelokamaka-in the word is life, in the word is death. Chant especially written for them by Kawena and is used to celebrate and honor their child. Reaffirm their commitment to doing what is necessary for their child to succeed. Teachers and transition specialists can and should support their students to become more active participants in transition planning. If we want our students to become more empowered (Jones, 2006), we must reach all students by using more culturally sensitive approaches with students from indigenous or immigrant communities. Including parents in this process strengthens the student-school connections, and also assists in bridging the gap, that often exists, between home and school culture.
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References 1.
Black, R.,Leake, D. (2011). Teacher’s views of self-determination for students with emotional/behavioral disorders: The limitations of an individualistic perspective. International Journal of Special Education, 26(1), 147-161. 2. Ewalt, P.L., Mokuau N. (1995). Self-determination from a Pacific perspective.SocialWork, 40(2), 168-175. 3.
Frankland, H.C., Turnbull, A.P., Wehmeyer, M.L.,Blackmountain, L. (2004). An exploration of the self-determination construct and disability as it relates to the Dine’ (Navajo) culture.Education and Training in Developmental Disabilities, 39(3), 191–205.
Goode, T. D., Sockalingam, S., Snyder, L. L. (2004). Bridging the cultural divide in health care settings: the essential role of cultural broker programs.National Center for Cultural Competence. 5.
6.
Landmark, L.J., Zhang, D. D., & Montoya, L. (2007). Culturally diverse parents’ experience in their children’s transition: Knowledge and skills. Career Development and Transition for Exceptional Individuals, 30(2), 68-79 7. National Secondary Transition Technical Assistance Center (2013).Secondary Transition Evidence-Based Practices and Predictors of Post School Success. 8.
Test, D.W., Karvonen, M., Wood, W.M., Browder D., &Algozzine, B. (2000). Choosing a self-determination curriculum.Teaching Exceptional Children, 33(2) 48-54. WHAT IS DISABILITY CULTURE? DISCOVER THE PRECIOUS TREASURE Steven E. Brown (Institute on Disability Culture, University of Hawai at Manoa)
Аңдатпа 2016 жылдың қыркүйек айында мені Тайваня мүгедектерінің құқысы бойынша Ассоциациясы спонсор болған «Біз қалай бармыз, сондаймыз: жарымжан адамдардың мәдени құндылықтарға көзқарасы» тақырыбындағы конференцияға қатысуға Тайбэйге шақырды. Конференцияның тақырыбы 1990 жылы мен жазған «Біз қалай бармыз, сондаймыз» эсседен алған цитата түрінде ұсынылған. Конференцияда сөйлеген сөзімде жарыжан адамдардың мәдени құндылықтар жағын көрсетуге және қазіргі кезеңде осы мәселенің эволюциясын ұсынуға мүмкіндік туды.
В сентябре 2016 меня пригласили в Тайбэй принять участие в конференции на тему «Мы такие, какие есть: Взгляд на ценности культуры инвалидов», которая спонсировалась Ассоциацией по правам инвалидов Тайваня. Тема конференции представляет собой цитату из моего эссе, написанного в 1990 году «Мы такие, какие есть». Выступление на конференции позволило мне осветить зарождение культуры инвалидов и представить эволюцию этой проблемы на современном этапе.
In spring 2016 I was invited to present at the September 2016 “We Are Who We Are: See Our Precious Disability Culture,” sponsored by the Taiwan Association for Disability Rights Conference, in Taipei, Taiwan. The title of the conference is a quote from one of my 1990s essays, “We Are Who We Are.” The conference presentation gave me a chance to both reflect on the beginnings of disability culture and to describe aspects of its present-day evolution.
What is disability culture? Discover the precious treasure
329 Disability Culture has evolved over the past thirty years to becoming an amazing, vibrant, and useful concept—and agent of change--today. Before discussing what Disability Culture looks like now, I’d first like to return 25 years ago, to 1991, when I presented at a conference in Little Rock, Arkansas, in the U.S. At the conclusion of that presentation (later published as “I Was Born (in a Hospital Bed)--When I Was Thirty- One Years Old,”), I first publicly attempted to share what I meant by disability culture in the form of this poem, “Tell Your Story:”
TELL YOUR STORY Steven E. Brown (c) 1995, All Rights Reserved, Institute on Disability Culture
Tell your story Tell your story It may bump from the page like words of Braille sizzling in tales of blazing glory; it may glisten in the sunshine like the holy grail, so tell me a tale, even if it's gory, I'm yearning to hear you Tell your story. Have you heard 'bout the man in the motorized chair? Found no ramp at the movie theater did he despair? No, just let them dudes lift him in there. Came back a few days later after somethin' greater brought with him a crew people in chairs just grew and grew, said they knew they'd be part of the view; no problem getting in, just lift and push and move those hunks of tin. The chairs, they weighed a-plenty, The ushers stressed and strained and got somewhat benty. Seeing the movie was not the goal changin' the stage was the whole they paid for gettin' in but that theater knew it sinned. People in chairs sealed their own personal stamp on that theater's shimmering new wheelchair ramp.
Steven E. Brown
330 Tell your story Tell your story It may enrapture the floating air like ASL singing its flair it might even glisten like the holy grail, but no one will set their sail toward your tale, even if it's hunky-dory, unless you tell your story Tell your story.
Once I knew a lady got caught in a picket line changed her whole design: came back to her hometown mission bound. Told a hospital it was ailing cause it was failing to see good health bound in the key of phone lines hooked up with a TDD. Said she'd seek cooperation or she'd be mighty angry might even round up folks and stoke fires of insurgency, gather signatures and seek publicity. You know that hospital saw the light put an end to the no TDD blight.
Last time I saw that lady she was waving a sign telling a TV station she sure did mind no news she could see so why should she listen to what they wanted her to be. Now she knows how to stick it with a picket and her pockets have been lined with Advocacy.
Tell your story Tell your tale You will find you touch with the sureness of a crutch a framework for your dwelling, a story needing telling, steaming like a sunburnt trail glistening like the holy grail. Who will know what you entail unless you risk the path to glory
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331 tell your story Tell your story.
Does he want another cup of coffee? I heard the waitress ask about the man. How did I know his plan just cause he couldn't see didn't mean his brain rested in incompetency. The stories he has told brisk and bold I've shared with more than a few over a cup of coffee or a tall, cold brew.
The lessons are in the telling they provide a framework and a dwelling. We all have so many stories to bear Cry, laugh, sing, and despair; how will our children learn and compare if we're too timid to dare to raise the flare share that we care. Tell your story Sing your tale Tell our story Shout our glory!
Tell our story Tell our story It may not bring fame It may have no glory, but cut through someone's life like a ray of sunshine break away barriers like a layer of turpentine, tell your story Tell your tale We're not as elusive as that holy grail. A Little History Where did the idea of Disability Culture come from? In the United Kingdom, in 1986, the London Disability Arts Forum held its first annual meeting where the late, great Vic Finkelstein delivered a paper called, “Disabled People and our Cultural Development.” In it he stated that Disability Culture: must develop spontaneously and creatively out of the collective experiences of disabled people. The development of our own distinctive culture to express a rounded picture of the reality of our lives will help us gain a place of our own choosing in the multicultural society. The celebration of difference, we will then discover, is the celebration of humanity, of being members of the human family [15].
Around the same time, in the United States, I read from cover to cover each edition of the groundbreaking magazine, Disability Rag. Editor Mary Johnson used the Steven E. Brown
332 phrase “Disability Cool” and a cartoon called “Disability Rat” featured a zealous character who pointed out abuse of handicapped parking spaces. Most significant for me was a 1987 article called “Emotion and Pride: The Search for a Disability Culture,” in which Johnson interviewed Carol Gill, a psychologist with a disability, who discussed the need for a disability culture. Gill stated: A disability culture movement can foster disability pride. It promotes pride in us; it allows us to project a positive image to the public. We renew each other and our strength through shared experiences and rituals. If we express our culture in some unified way, we're signaling; we're communicating what our values, goals, and identity are. Through our culture we can recruit people. When we present a strong image, it motivates people to want to belong. They want to be part of something that powerful [18]. By the late 1980s, I realized my passion had become Disability Culture. I perceived it as a way to combine my interests and background in history, reform, and culture. In the spring of 1990, I first publicly approached the idea of Disability Culture at the National Council of Independent Living annual conference in Washington, D.C.
I conceived a panel called "Speakers of the Independent Living Movement: Voices of Independence." Three panelists shared our stories for about forty-five minutes with an audience of a couple hundred people. We’d left half of our time for audience participation, but it was not enough. Everyone in the audience, it seemed, had a story they wished to share. The energy in the room and in the halls after we concluded was overpowering. There was no question that people were hungry for an abundance of stories--their own and others. Leaving the room, exhilarated at the response, conversing with co-panelist Judy Heumann (currently Special Advisor for International Disability Rights in the U. S. Department of State) I knew I wanted to keep exploring this area. A few days later, in Tulsa, Oklahoma, at a state independent living conference, I facilitated a panel called simply "Disability Culture." A group of about six of us informally discussed this idea. Did such a culture exist? If it did, was it beneficial? What characteristics comprised such a culture? How did it affect our lives? How might it impact nondisabled people? Each participant wrestled with these queries and offered some tentative answers. Later that year, I moved to California to work at the World Institute on Disability. I stayed there for three years and continued to think about the idea of disability culture while I worked at a Research and Training Center on Independent Living. Between 1992 and 1994, several “firsts” relating to disability culture converged. The first Disabled Student Cultural Center opened at the University of Minnesota; Berkeley, California disability performance poet Cheryl Marie Wade received a National Endowment for the Arts Solo Theatre Fellowship; and I received the first national fellowship to research disability culture. In late 1993, Lil (Lillian Gonzales Brown—my wife and partner) and I moved from California to southern New Mexico, where we created the Institute on Disability Culture
[17]. One of the first activities of the Institute was publication of my Fellowship research as a monograph called,
an “Executive Summary,” I wrote: The existence of a disability culture is a relatively new and contested idea. Not surprising, perhaps, for a group that has long been described with terms like “in-valid,” “impaired,” “limited,” “crippled,” and so forth…. The Disability Culture Movement is running full steam ahead. While I write, and you read, What is disability culture? Discover the precious treasure
333 multiplying numbers of people are creating rapidly increasing examples of disability culture (pp. 8-9). We also created our vision, and mission statement: “Promoting Pride in the history, activities, and cultural identity of individuals with disabilities throughout the world.” From that statement came our slogan, “Promoting Disability Pride.”
In 1996, several years after beginning to talk and write about disability culture, I published an article that included this one-paragraph definition: People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives, our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity. We are who we are: we are people with disabilities” [8; pp. 80-81].
Why and how can Disability Culture be used to expand our lives, our advocacy, and our ability to implement change? An initial response is simply if we do not understand our own culture(s), how can we expect others to do so, let alone understand why our culture is important to us? How can we show--and share--disability culture and disability pride, unless we ourselves understand what they mean? About ten years ago, Sarah Triano, once a student leader and the force behind the longest, continuing Disability Pride parade, wrote: Disability Pride is an integral part of movement building, and a direct challenge to systemic ableism and stigmatizing definitions of disability. It is a militant act of self-definition, a purposive valuing of that which is socially devalued, and an attempt to untangle ourselves from the complex matrix of negative beliefs, attitudes, and feelings that grow from the dominant group’s assumption that there is something inherently wrong with our disabilities and identity [32; pp. 476-77]. How do we show disability pride? Disability Culture? This is where we move from the “talking head” portion of the presentation to sharing Disability Culture through examples that demonstrate disability rights, history, talents and resources. Because when we understand our culture(s), we can use examples from them to explain our history, advocacy, talents, and resources, and why there are many reasons for us to be proud of who we are—both as individuals and as a group. The remainder of this presentation will therefore be focused on sharing examples of our Disability Culture. Select Examples from Disability Culture • Dance • Comic Books • Comics
• Comedians: • Museums • Movies
• Literature • Music
• Protests and Parades Steven E. Brown
334 • Music Videos Dance: The first disability dance troupe I came across was after I moved to California. It was the Axis Dance Company, which is described as a physically integrated dance company, which means it includes dancers both with and without disabilities. Axis was founded in 1987, and in the past 30 years has become internationally known. A dancer who has worked with this company and many others is Alice Sheppard, a former professor of medieval studies. On her website, Alice writes: I dance in pieces that explicitly question what we think we know about disability, dance, and the body. I also perform in pieces that address disability only by dint of my presence. I move in my wheelchair, without assistive technologies on the floor, and with my crutches and wheelchair together. Each of these modalities provides a new movement language, a new technique, and a distinct path to virtuosity. But they are each also a pure embodiment—a metamorphosis into a body with its own integrity and unique capacity for dance [25].
classes for some time now. The creation of a group of American and Syrian youth in 2010, the Silver Scorpion is an Arabic, Muslim comic book hero who lost his legs in a land mine accident. I like the way this hero was created, the fact that he comes from another culture and that his story continued beyond the original comic book. Comics: Department of Ability. Comics are also a part of the Disability Culture. This particular one I chose as an example a parent following a daughter’s wishes. As described on the Department of Ability website: This gang of Superheroes, use their disabilities as their super powers. Disabled children deserve to be represented in books and on TV in a positive way. Without sad music in the background accompanying their story. Children with disabilities are funny, exciting, happy, sad, mischievous, rude, caring. Just like any other child I have created the Department Of Ability and am in the process of writing a comic, to be released in 2016/2017. I also hope to get it onto TV, so that ALL children, (not just ones with special needs) can watch enjoy, relate to, and realise that the child who lives down the street, is just the same as them. Just with a difference [33]. Comedians: Josh Blue, is an American comedian with Cerebral Palsy who won an American TV show called Last Comic Standing. I have used one of his appearances on the show in my courses when I can find the captioned version, which is sometimes available and then seems to disappear. Museums: The Smithsonian National Museum of American History, which is one of a group of national museums in Washington, D.C., has featured disability-related exhibits for many years now. Several years ago, the Museum initiated an online exhibit called, “Everybody: An Artifact History of Disability in America.” On the webpage titled “Place” a historic and well-known poem, “Disabled Country,” by my friend Neil Marcus is featured. Neil doesn’t recall exactly when he wrote this poem, but it was sometime in the mid-1980s.
What is disability culture? Discover the precious treasure
335 “Disabled Country” (n.d.) by Neil Marcus If there was a country called disabled, I would be from there. I live disabled culture, eat disabled food, make disabled love, cry disabled tears, climb disabled mountains and tell disabled stories. If there was a country called disabled, Then I am one of its citizens. I came there at age 8. I tried to leave. Was encouraged by doctors to leave. I tried to surgically remove myself from disabled country but found myself, in the end, staying and living there. If there was a country called disabled, I would always have to remind myself that I am from there. I often want to forget. I would have to remember...to remember. In my life's journey I am making myself At home in my country [22].
actual portrayals are not usually what disability advocates want to see. Therefore, I want to share some less well-known aspects of movies and disability. First, while I’m personally not a fan of horror movies, zombies, or vampires, I couldn’t help but be impressed by what I read about a movie called,
intellectual disabilities, who met in grade school at a Special Olympics, and funded via Kickstarter, this movie is described as the ultimate teen zombie movie. The pair are heroes with bionic superpowers who are the only ones able to stop the zombies [29]. Quite different are the efforts of transgender, disabled director Dominick Evans, who has over 21,000 followers on Twitter and runs a regular Twitter conversation about film called #FilmDis. This is described as a discussion of “Equality in Film in front of and behind the camera” [14]. Finally, filmmaker and parent, Dan Habib’s 2009 documentary, Including Samuel, featured his son and four other families who experience disabilities: Before his son Samuel was diagnosed with cerebral palsy, photojournalist Dan Habib rarely thought about the inclusion of people with disabilities. Now he thinks about inclusion every day. Shot and produced over four years, Habib’s award-winning documentary film, Including Samuel, chronicles the Habib family’s efforts to include Samuel in every facet of their lives. The film honestly portrays his family’s hopes and struggles, as well as the experiences of four other individuals with disabilities and their families. Including Samuel is a highly personal, passionately photographed film that captures the cultural and systemic barriers to inclusion [16].
work. One of my favorite sites these days is called, “Disability in Kidlit”, which is, “is dedicated to discussing the portrayal of disability in middle grade and young adult literature. We publish articles, reviews, interviews, and discussions examining this topic from various angles—and always from the disabled perspective” [9].
wrote:
I love music, and as someone who came of age as a protester in the late 1960s and early 1970s, I appreciate how music, protest, culture, and change, Steven E. Brown
336 connect…. In compiling these songs, I included a variety of genres, cultures, and countries, because musicians with disabilities are creating in all of them and because, with international access, those of us in the U.S have access to, and are influenced by, what is happening all over the world [6]. This seems like a great place to recognize the work of my friend, Leroy Moore, founder of the Krip Hop Nation. While Krip Hop takes its name in part from its revolutionizing of Hip Hop music, it is also self-described as “More than Music.” And in that sense, I want to share Leroy’s article, “New Term Using History Internationally to come up with the Present: AfroKrip:” In my vision there is a process or steps to get to AfroKrip. AfroKrip at the highest level is a common political stage where the person is comfortable with their identity as a person with a disability and are throwing off the mainstream brainwashing of overcoming or hiding disability to also reach beyond themselves to others for community and discovery of history building on arts and struggles of our African disabled ancestors [24]. As we discuss Disability Culture(s) it is vital to recognize that there is not a monolithic Disability Culture. There are, like with disabilities themselves, dynamic, constantly changing, and newly-discovered disabilities—and cultures, such as Leroy describes above. While I’m a bit older than Leroy, there are a whole slew of activists in the U.S., who describe themselves as Generation ADAers. One of those young folks is a black woman named Vilissa Thompson, who’s created a stir with blog posts via her website, “Ramp Your Voice!” Vilissa, who I know from the Internet, writes that she will use “Ramp Your Voice!” to: spotlight the issues and barriers of people with disabilities, as well as create effective social and political changes to ensure that all people have the ability to succeed and prosper, regardless of their ability, ethnicity, religion, socioeconomic status, educational level, or place of origin [31]. Thompson has been doing this with posts like, “#DisabilityTooWhite: Making the “Good Trouble” in Advocacy,” in which she also created the Twitter hashtag “#DisabilityTooWhite.” She described why she did this: Alice Wong, a dear friend and fellow advocate, shared an article about disability and beauty that showcased the “standard” imagery of beauty for disabled women: disabled White women. In Alice’s tweet and response, she shared her frustration regarding the lack of diverse representation about who we are as a collective group, and I and many others, chimed in with similar sentiments. While I was tweeting my thoughts, an idea popped into my mind, and I started writing #DisabilityTooWhite in my tweets [30]. This hashtag quickly went viral and the conversation continues. Which given the presence of both Vilissa and Alice is no shock. I didn’t know, or know of, Alice Wong before moving the Bay Area in 2014, but I quickly learned about her. We have become friends, but it is also fair to say I’m a huge fan of Alice and her work. A year or two ago, when we in the U.S. were thinking of different ways to celebrate the 25 th anniversary of the signing of the ADA in 2015, Alice conceived the Disability Visibility Project, which is described as: an online community dedicated to recording, amplifying, and sharing disability stories and culture. The DVP is also a community partnership with StoryCorps, a national oral history organization. One individual, Alice Wong, runs the DVP (with the support of several volunteers). Our aim is to create
What is disability culture? Discover the precious treasure 337
disabled media that is….intersectional, multi-modal, and cross-platform. Like a virus invading a host organism, stories by disabled people can alter the structure and very DNA of mainstream media. Transformative culture change from the inside/outside/every direction [12]. Alice also has the distinction of being the first person to visit the White House robotically [27]. Parades and Protests: When I was a young(ish) advocate in the 1980s, I met a woman from Boston who talked about and implemented a Disability Pride Parade in 1990. Unfortunately, she died young and so did that Parade. But then Sarah Triano, of the “Disability Pride” definition, became a primary force in developing Disability Pride Parades in Chicago in the early 2000s. The first was held in 2004 and has been an annual tradition every since. It has also grown and I had the pleasure of being Grand Marshal in the 2005 Chicago parade and marching a few years later in a Stockholm parade.
Parades and Protests may have similar themes: gathering to celebrate; marching to protest. ADAPT has been around since the early 1980s, first protesting the lack of wheelchair accessible buses and over the years moving to a focus on community integration. Photographer Tom Olin, who has been at many ADAPT protests, is often considered the foremost photographic chronicler of the Disability Rights Movement [11].
In discussing this presentation a question I was asked was how disability culture can be used to create change. I hope that you have seen ways that can happen. But I would also ask of each of you the following questions that may be useful in your everyday lives to use disability culture to create change. For example: 1. How would you create disability culture? 2. Can you facilitate the creation of culture? 3. How would you use examples of disability culture of which you’re already aware to create more disability culture? 4. How would you use Disability Culture to create change? Three Taiwanese women combined protest and culture. Sandie Yi and Sleeve Yu protested in front of the Taiwan National Theatre and Concert Hall (NTCH). This building is being renovated after 30 years and a banner on the building reads “See You Next Spring (NTCH is scheduled to reopen in Spring 2017). The building is closed for renovation after 30 years of operation, but NTCH ignored the fact that they need to provide 12 wheelchair accessible seats by law (they had 5 and were going to add only one more). NTCH argued that adding wheelchair seats would affect the acoustic quality, create barriers to emergency evacuation and cause loss of revenues. Sandie provided real case studies and used examples from The Kennedy Center in the U.S. to counter some of the arguments presented by NTCH. NTCH was asked to respond to the demands of adding wheelchair seats within one month. After the meeting, Yi and Yu and a few disabled activists began critiquing NTCH via social media and attracted supporters and fellow-activists to join the fight. While waiting for NTCH to respond, Sandie and Sleeve then initiated an online photo event, asking people to share their experiences with attending inaccessible arts and culture events. They also asked people to name their hopes and dreams for a better and accessible arts and culture experience. They invited people to write their own words on paper and photograph themselves in front of the arts and culture venues (Personal Communication, August 2, 2016). Grace Chang protested in front of the National Museum and Opera House about a lack of more seats for those using wheelchairs. Her protest poster read “Equal Rights for
Steven E. Brown
339 Participating Culture. Give us more wheelchair seats.” According to the Accessibility Act to Public Buildings the building lacks a required 19 seats, but there have been no fines or penalties. (Personal Communication, July 31, 2016). What ways might you use Disability Culture to celebrate, protest, and/or create change?
videos, Mobility International’s “Loud, Proud and Passionate!” which shows women from all over the world creating change. A line from the video perhaps may be a Manifesto for how Disability Culture can be used for change: “Making our dreams come true, knocking down the barriers; changing the world, there’s nothing we can’t do” ( Thank you and let’s all move forward Promoting Disability Pride!
References: 1.
ADAPT. Retrieved from www.adapt.org. 2.
Axis Dance Company. (nd). Retrieved from http://www.axisdance.org/. 3.
Blue, Josh. (2006-2016). Retrieved from http://www.joshblue.com/. 4.
Brown, Steven E. (2003). "I Was Born (in a Hospital Bed)--When I Was Thirty-One Years Old," in Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride. New York: iUniverse. 5.
Disability Culture. Available at: https://www.academia.edu/6421438/Investigating_a_Culture_of_Disability_Final_Report. 6.
http://www.instituteondisabilityculture.org/manifesto/-my-top-25-disability-pride-songs. 7.
Brown, Steven E. (1995). “Tell Your Story.” In Pain, Plain--and Fancy Rappings: Poetry from the Disability Culture. Institute on Disability Culture. Retrieved from. 8.
Brown, Steven E. (2003). “We Are Who We Are…So Who Are We?” Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride. New York: iUniverse. 9.
Disability in Kidlit. (nd). Retrieved from http://disabilityinkidlit.com/. 10.
Disability Rag. Now accessible online via Ragged Edge Online at http://www.ragged-edge- mag.com/. 11.
12.
Disability Visibility Project. Retrieved from https://disabilityvisibilityproject.com/. 13.
“Everybody: An Artifact History of Disability in America.” (nd). Smithsonian National Museum of American History. Retrieved from https://everybody.si.edu/. 14.
Evans, Dominick. (2007-2014). Retrieved from http://www.dominickevans.com/. 15.
(Disability Arts in London) Magazine, 1987. Retrieved from http://www.independentliving.org/docs3/finkelstein87a.pdf 16.
17.
Institute on Disability Culture. www.instituteondisabilityculture.org. 18.
Johnson, M. (1987), Emotion and pride: The search for a Disability Culture. Disability Rag, January-February, pp. 4-10. 19.
Josh Blue-Last Comic Standing (captioned version-sometimes available). Retrieved from http://www.overstream.net/view.php?oid=tbu8ujrsutlc. 20.
Last Comic Standing. (July 10, 2016). Retrieved from https://en.wikipedia.org/wiki/Last_Comic_Standing. 21.
http://www.youtube.com/watch?v=mXAwfg0jgdU&feature=related. 22.
Marcus, Neil (nd). Disabled Country. Retrieved from https://www.youtube.com/watch?v=e8CLrv8dd-E&feature=youtu.be. 23.
Mobility International. (Jan. 4, 2011). Loud, Proud and Passionate! Retrieved from http://www.youtube.com/watch?v=uxxomUVsSik. 24.
Moore, Leroy. (June 1, 2016). New Term Using History Internationally To Come Up With The Present – AfroKrip. Retrieved from http://kriphopnation.com/new-term-using-history- internationally-to-come-up-with-the-present-afrokrip/. What is disability culture? Discover the precious treasure
339 25.
Sheppard, Alice. (nd). Retrieved from http://alicesheppard.com/. 26.
27.
Time. IFLScience! Retrieved from http://www.iflscience.com/technology/robot-meets-president- obama-white-house-first-time/. 28.
http://www.springbreakzombiemassacre.com/. 29.
Squires, John. (July 1, 2016). Teenage Friends Unleash a Spring Break Zombie Massacre; Watch the Trailer! Retrieved from http://www.dreadcentral.com/news/174551/teenage-friends-unleash- spring-break-zombie-massacre-watch-trailer/. 30.
Advocacy. Retrieved from http://rampyourvoice.com/2016/05/26/disabilitytoowhite-making-good- trouble-advocacy/. 31.
32.
Triano, Sarah. Disability Pride. Encyclopedia of Disability (2006). Gary Albrecht, Ed. Thousand Oaks, CA: 2006, pp. 476-77. Retrieved from http://www.disabilityprideparade.org/page-122470. 33.
White, Dan. (2016). Department of Ability. Retrieved from https://www.departmentofability.com/. 34.
Independence Today. Retrieved from http://www.itodaynews.com/2012-issues/june2012/disability- pride.htm.
М.Қозыбаев атындағы Солтүстiк Қазақстан мемлекеттiк университетiнiң хабаршысы Меншік иесі: ҚР Білім және ғылым министрлігінің «Манаш Қозыбаев атындағы Солтүстiк Қазақстан мемлекеттiк университетi» ШЖҚ РМК. №13405-Ж есепке алу туралы күәлігін 2013 жылдың 25 ақпанында ҚР Мәдениет және ақпарат министрлігі берген.
Басылуға 11.11.2016 ж. қол қойылды. Пішімі 60×90 1/8. Times гарнитурасы. Кілемі 42,4 б.т. Таралымы 60 дана. Кітап-журнал қағазы. Тапсырыс №192. М.Қозыбаев атындағы СҚМУ баспаханасында басылды. 150000, Петропавл қ., Пушкин к., 86.
Собственник: РГП на ПХВ «Северо-Казахстанский государственный университет имени Манаша Козыбаева» МОН РК. Свидетельство о постановке на учет №13405-Ж от 25 февраля 2013 г. выдано Министерством культуры и информации РК.
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2016 г. Формат 60×90 1/8. Гарнитура Times. Объём 42,4 усл.печ.л. Тираж 60 экз. Бумага книжно-журнальная. Заказ №192. Отпечатано в СКГУ им. М. Козыбаева. 150000, г. Петропавловск, ул. Пушкина, 86.
Bulletin of M.Kozybayev North Kazakhstan State University Owned by Republican State Enterprise «M.Kozybayev North Kazakhstan State University». Certificate no.13405- Ж issued by Ministry of Culture and Information of the Republic of Kazakhstan on 25 February, 2013.
Signed for publishing on 11/11/2016. Size: 60x90 1/8. Font type: Times. Volume: 42.4 conventional lists. Number of copies: 60. Order no. 192. Printed on office paper by M. Kozybayev NKSU Press, 86, Pushkin street, Petropavlovsk, Kazakhstan, 150000. Document Outline
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