9/25 DVP Event: Conversation with Deaf and Disabled Artists

Below is the program for an event co-organized by the Disability Visibility Project™ that will take place on September 25, 2016 at the Contemporary Jewish Museum, San Francisco, California.

Deaf/Disabled Artists: A Conversation

Stories from the Disability Visibility Project™

The Contemporary Jewish Museum

September 25, 2016

2:00-4:00PM

Welcome/Opening Remarks

Cecile Puretz, Access and Community Engagement Manager, The Contemporary Jewish Museum, Co-founder of The Bay Area Arts Access Collective (BAAAC)

Introduction by StoryCorps

Như Tiên Lữ, StoryCorps, Regional Manager, San Francisco StoryBooth

Yosmay del Mazo, StoryCorps, Facilitator, San Francisco StoryBooth

Geraldine Ah-Sue, StoryCorps, Facilitator, San Francisco StoryBooth

Panel Discussion with Deaf and Disabled Artists

Moderator: Alice Wong

Panelists: Patty Berne, Antoine Hunter, Jennifer Justice, Leroy F. Moore Jr.

Topic #1: Community

DVP Story: Maia Scott and Ron Jones (August 14, 2014)

Text transcript:

Ron Jones: For instance, you’re blockhead thing to me is the most inspirational theatric performance art I’ve ever witnessed.

Maia Scott: Are you calling me a blockhead?

[Laughter]

Ron Jones: No, explain what blockhead is.

[Maia laughs. Ron vocalizes various sounds throughout]

Maia Scott: Blockhead is basically a cube that sits on my head. That has Velcro on it and I can put strange objects on it like batteries and book lights and toilet paper rolls and big springs and anything and create faces. Then the body, of course, becomes the character that goes with each face.

The fun part about the cube is that there are four sides to play with. I love that piece. It’s also very bittersweet. It still lives. It has had a second incarnation now. And it came out of kind of a deep dark place as an artist. As a visually impaired artist who loves vision and color and movement. And it’s often approached after a performance, “Wow, you’re blind. You’re visually impaired and you can do that. You have so much sense of color. And wow, that’s amazing. I’m going to put you on a pedestal that’s so high, you’re going to get a nose bleed.” And then there’s the overweight part and people come up and say, “Whoa, people like you shouldn’t be able to do that.” So, I find that when I do pieces like blockhead, or funny things, or character things, it becomes less about blindness or disability, but more about ability and unity and community and togetherness…

Ron Jones: Yeah, yeah!

Maia Scott: It’s really amazing this San Francisco arts culture that we have. It’s so inclusive. This whole genre of disability art culture feels so rooted here in the Bay area. I’m sure it’s other places as well. It’s part of what drew me up here to work with Theater Unlimited and to allow myself to emerge…

Questions to the panel:

What is unique about the Disability/Deaf arts community here?

What’s your vision for the evolution of our community in terms of movement-building, organizing, and infrastructure?

Topic #2: Creativity and Success

DVP Story: Madelyn Covey and Nick Pagan (September 2, 2014)

Text transcript:

Madelyn Covey: I don’t know if you want to talk about this but you do a lot of really great sculpture stuff like making props and making things like that. You also in ceramics frequently make- [giggles]

Nick Pagan: Mr. Boners.

Madelyn Covey: Yeah Mr. Boner character. What’s behind that?

Nick Pagan: The dick with arms, he goes on adventures. Uh, I got inspired from a movie called Superbad. At the end of the credits they show these drawings of dicks with arms, I decided to do one where he goes across time and just does all kinds of outlandish shit.

Madelyn Covey: What kind of stuff have you had Mr. Boner do?

Nick Pagan: I’ve had a hitchhiker boner, I made a super boner which sold really fast. I’ve done a cowboy one where he’s riding one of those horses with … It’s just a head and the stick, I’ve done … Oh my God I’ve done so many … I’ve done the George Foreman.

Madelyn Covey: George Foreman boner?

Nick Pagan: Yeah.

Madelyn Covey: That’s cool.

Nick Pagan: I paid tribute to Joe Frazier, he’s a boxer, he died a couple of months ago, years ago. I made a boner of him. I even made an animation of Mr. Boner.

Madelyn Covey: Oh cool, what does he do in the animation?

Nick Pagan: He just rides across the screen and it says, “Mr. Boner rides again.”

Madelyn Covey: Oh, nice.

Nick Pagan: Oh…I also made a uhhhhh Atari controller boner which it can actually-

Madelyn Covey: It’s a joystick!! [laughs]

Nick Pagan: Yeah, it’s actually a joystick and it’s called the original joystick.

Madelyn Covey: That’s really funny. [laughs] Cool. At Creative Growth we have so many different mediums that you do, do you have a favorite or do you?

Nick Pagan: Yes I do, I have two favorites. I have filmmaking and ceramics.

Madelyn Covey: And um, being at Creative Growth you’re a pretty successful artist, you sell your artwork, you have your drawings on t-shirts that celebrities have bought and stuff like that how does that feel, like?

Nick Pagan: It feels good but when I tell people they’re like, “No, not really. You’re not that famous, I haven’t heard of you.” I’m like, “Because I’m underground man!!” I’m not known yet. Yeah, it feels great.

Madelyn Covey: Did you, when you were younger did you think you’d be a successful artist?

Nick Pagan: No. I actually didn’t like art when I was younger. It was when I was in the hospital, I was admitted to the hospital a lot as a kid. That’s when I started doing art because I was so bored then it just took off from there, I just couldn’t stop.

Questions to the panel:

What inspires your art and what is your creative process like?

As an artist, what does success mean to you?

Topic #3: Risk Taking and Pain

DVP Story: Fran Osborne and Anthony Tusler (June 16, 2016)

Text Transcript:

Fran: And I think that’s also what’s so great about photography, and what you’ve been doing with photography is it can express things, or it can articulate things very well that you know can’t be expressed in words sometimes.

Anthony: That’s the whole thing with art. Yeah.

Fran: And so, yeah.

Anthony: And that’s where… about disability, and being able to show those things, I mean, that’s the excitement to me, but the frustration as well. Because I always feel like I’m getting close, but I can’t quite get it…that, you know, that… I think art is cruel.

Fran: Yeah, because is it…?

Anthony I think it’s cruel, I really do.

Fran: Is it because…because I think, um, I’m also a painter, too.

Anthony: Oh, I didn’t realize that, oh, ok.

Fran: Yeah, so I’ve been trying to get my painting going again, and it *IS* very difficult. It’s very cruel. That’s a really good way of describing it because you have to dig so deep into something you don’t know what it is…

Anthony: Right.

Fran: And you have to keep going to that place.

Anthony: And letting go, letting go, while you dig. Yeah. It’s very hard.

Fran: You never know whether you’ve got that or not, so all you can do is just do the work, and put it out there…

Questions to the panel:

What are the real-world limits, risks, and painful aspects of creation for you as an artist?

When you ‘dig deep’ in exploration, what do you usually discover about yourself, your collaborators, and life in general?

Topic #4: Accessible Spaces

DVP Story: Jennifer Justice and Alice Wong (May 21, 2016)

Text Transcript:

Jennifer: I’ve been doing guerilla access my whole life. Grabbing someone to read wall texts to me and first my dad [laughter] and then, my poor dad who really can’t draw a straight line. [laughter] He would read the text to me at the museum and then later on my friends. So I think museums are such hostile spaces for blind people in particular and for disabled people and these conversations are really touchy, pardon the pun, I mean maybe not pun intended. There are very touchy topics because the work is property, you know, and it’s been valued in some cases millions and millions of dollars.

Alice: As a disabled person how should you feel going into a museum? How do you want to feel?

Jennifer: First of all I don’t want to be harassed by anyone. [laughter] I think that’s … I would like that to stop right now, forever. And uh, I would like to see more, I know it would be great to have more museum staff who are disabled people themselves I think that would be a huge help and people of color and people from different, people who are from different walks for life who are, because the museum should feel like it’s for everybody and not just for white people or rich, white people. That would make me feel a lot more comfortable in a museum space. I don’t want things behind glass and you know, and wall texts that are large and also audio description available if you could just like the punch of a button and Braille to be available and different languages to be available and uh…. I would just want it to be more of a community, uh, you know, sort of like a fellowship, I don’t know, like okay; this is my Southern stuff coming in. We used to call the place where we ate dinner after church, the fellowship hall, right? I just want it to be more about fellowship.

Alice: Describe that. Describe that please.

Jennifer: Everybody just comes and then you seat down and eat and everybody is welcome and everybody eats and everybody is served. It’s just a time for people to hangout and be a community together. And it’s not like… It’s like your space, you should feel like it’s your space and not some rich, trustee’s space that you’re just being allowed in you know, “If you’re really good [laughter] you can stay and if you’re not too boisterous. If you don’t touch anything and if you don’t do this or that!” So it shouldn’t feel like that. It should feel more like a community space.

Alice: Well, I think that’s a great challenge for …

Jennifer: For them [laughter]

Questions to the panel:

In what ways are spaces such as museums, galleries, performance venues, studios, and rehearsal spaces, hostile to Deaf/Disabled artists?

How do we demand and create spaces that are accessible and welcoming to all?

Q&A session

Thank You!!

ASL Interpreters: Jennifer Mantle and Pilar Marsh

CART Captioner: Audrey Spinka

Audio/Visual for the CJM, David Elinoff

Access and Community Engagement Manager of the CJM, Cecile Puretz

About: Panelists

Patty Berne is co-founder / executive director of Sins Invalid (www.sinsinvalid), a disability justice based performance project centralizing disabled artists of color and queer and gender non-conforming artists with disabilities. Berne’s training in clinical psychology focused on trauma and healing for survivors of interpersonal and state violence. Her professional background includes offering mental health support to survivors of violence and advocating for LGBTQI and disability perspectives within the field of reproductive genetic technologies. Berne’s experiences as a Japanese-Haitian queer disabled woman provides grounding for her work creating “liberated zones” for marginalized voices. She is widely recognized for her work to establish the framework and practice of disability justice. Image by Richard Downing courtesy of Sins Invalid.

Antoine Hunter A Bay Area native, Antoine Hunter is an award-winning African-American Deaf and Hard of Hearing choreographer, dancer, dance instructor, actor, speaker, model, producer, poet and Deaf advocate who has performed and hosted workshops throughout the Bay Area and the world including London, Italy, Cuba, Africa, Peru, Paris and Rome to name a few. He teaches dance and ASL in both Hearing and Deaf communities and is the founder and artistic director of Urban Jazz Dance Company since 2007 and the Bay Area International Deaf Dance Festival since 2012. Image by RJ Muna.

Jennifer Justice is a multi- media artist, educator, and scholar. Her art practice explores the intersections between disability, technology, medicine, and art. Her work has been exhibited at StoreFrontLab and the African American Cultural Center in San Francisco, the Chicago Cultural Center, Zolla/ Lieberman Gallery, and the Birmingham Museum of Art. She is a lecturer in the Practice of Art and Disability Studies minor at UC Berkeley.

Leroy F. Moore Jr. is a Black writer, poet, hip-hop\music lover, community activist and feminist with a physical disability. Founder of Krip-Hop Nation (An international network of disabled Hip-Hop and other musicians.). Leroy currently writing a book on Krip-Hop Nation and his poetry/lyrics book, The Black Kripple Delivers Poetry & Lyrics has been published in late 2015 by Poetric Matrix. Leroy has a poetry CD, entitled Black Disabled Man with a Big Mouth & A High I.Q. and has put out his second poetry CD entitled The Black Kripple Delivers Krip Love Mixtape. Leroy is a longtime columnist, one of the first columns on race & disability that started in the early 90’s at Poor Magazine in San Francisco. Leroy is one of the leading voices around police brutality and wrongful incarceration of people with disabilities.

About: Disability Visibility Project™ and Alice Wong

Alice Wong is a San Francisco-based night owl, cat lover, and coffee drinker. Currently, she is the Founder and Project Coordinator for the Disability Visibility Project (DVP), a community partnership with StoryCorps and an online community dedicated to recording, amplifying, and sharing disability stories and culture. Partnering with Andrew Pulrang and Gregg Beratan, Alice is an organizer of an online campaign called #CripTheVote encouraging conversations about disability issues during the 2016 Presidential election. She is also a Staff Research Associate at the Community Living Policy Center, University of California, San Francisco. You can find her on Twitter: @SFdirewolf

For more about the Disability Visibility Project™

Website: http://DisabilityVisibilityProject.com

Facebook: https://www.facebook.com/groups/356870067786565/

Twitter: @DisVisibility

Email: DisabilityVisibilityProject@gmail.com

About: StoryCorps in San Francisco

From StoryCorps’ About page:

StoryCorps’ mission is to preserve and share humanity’s stories in order to build connections between people and create a more just and compassionate world.

StoryCorps is built on an uncompromising commitment to excellence throughout the organization that includes an intense focus on the collecting, sharing, and preserving of people’s stories; high-quality organizational management; and the care and support of an extraordinary work environment where respect and dignity are paramount.

The interview session is at the heart of StoryCorps. We treat participants with the utmost respect, care, and dignity.
StoryCorps maintains a relentless focus on serving a wide diversity of participants.
StoryCorps is a public service.

Visit StoryCorps in San Francisco at the San Francisco Public Library

6th Floor

100 Larkin St.

San Francisco, CA 94102

Booth Hours

Thursday: 1:00 PM – 7:00 PM

Saturday: 11:00 AM – 5:00 PM

Schedule times and dates may vary and are subject to change. This includes major holidays.

StoryCorps: https://storycorps.org

StoryCorps San Francisco: https://storycorps.org/san-francisco/

StoryCorps in San Francisco’s Facebook page: https://www.facebook.com/StoryCorpsSF/

About: The Contemporary Jewish Museum

The Contemporary Jewish Museum strives to ensure that its facilities, exhibitions, and programs are accessible, and that all of our visitors feel a sense of welcome, respect, and inclusion. The CJM is proud to support the vibrant Disability arts and cultural community in the Bay Area, and offers a range of programs and resources benefiting a broad diversity of visitors.

To learn more about Access at The CJM, email Cecile Puretz, Access and Community Engagement Manager at access@thecjm.org, call 415.655.7856 or visit thecjm.org/visit/accessibility-information

About: Bay Area Arts Access Collective (BAAAC)

The Bay Area Arts Access Collective (BAAAC) is a grassroots network dedicated to promoting accessibility in the Bay Area’s arts and cultural spaces. BAAAC is made up of a diverse group of museum professionals, artists with disabilities, disability justice advocates, and educators who are passionate about creating access and equity in the arts. Through community gatherings and professional development workshops, BAAAC facilitates dialogue around different topics of accessibility and inclusion.

To learn more, or join BAAAC, email bayareaartsaccess@gmail.com or visit us on Facebook facebook.com/bayareaaccess/

Ableism in Journalism: How the Coverage of Jerika Bolen’s Story Negatively Affects All Readers

Guest Blog post by Hannah Soyer

This fall I’ll be a senior with at the University of Iowa, where I’m majoring in English and journalism. I also happen to have a disability, which for better or for worse, means that I have had my fair share of stories about me. A good handful of them have turned out much the same, portraying me in a stereotypical, inspirational light. The stories that I was happy with, however, all had something in common: they were put together by journalists who listened to what I had to say and were not afraid to break the mold of the disability narrative so touted by mainstream society today.

Jerika Bolen is a 14 year-old girl with SMA (spinal muscular atrophy, the same disease that I have) who has chosen to end her life-supporting care at the end of August, thus ending her life. She says that the reasoning behind this is that she’s in constant pain. I don’t agree with her decision. But this story isn’t about her decision, it’s about the incredibly negligent, ableist way that journalists are covering it.

Frustratingly, ableism isn’t quite recognized as an actual “-ism” by mainstream society yet (my Microsoft Word is even telling me its not a word, signified by an angry red scribble), so I want to take the time to define it for those who are unfamiliar with the term. Actually, I am going to quote Anna Landre in her recent piece for Women’s E News because I don’t think I could describe it as succinctly. Ableism is “the misguided societal perception of those with disabilities as less capable, more pitiful and inherently different from able-bodied people.” Landre goes on to say, “It’s important to note that ableism is, in most cases, not purposeful. While racist or sexist comments are often intentionally discriminatory, ableism is so ingrained in our culture that people scarcely realize they’re propagating it at all. It’s not driven by hatred or hostility, like discrimination towards a different race or gender, but originates in misguided compassion and ignorant pity.” It’s so ingrained in our culture that people scarcely realize they’re propagating it at all.

This is probably why mainstream media have such a difficult time handling people with disabilities, why there’s always such a fight between the disabled and non-disabled community after a news story about a person with a disability is published that is clearly ableist. Because it’s rarely intentional, people don’t see it as a problem. Or because it’s so ingrained in our culture, they don’t even recognize it.

Articles covering Jerika’s story have conflated SMA with intense pain, flip-flopped on the number of surgeries she has had, and have not thoroughly investigated or reported on all of the possible reasons her quality of life is lacking. As a journalist, I know that it’s easier to go into a story without examining your own biases, and to take everything at face value. I know that it’s easier to not look around and see all the possibilities, that it’s easier to simply type out what you have in your notes, and not really do any thinking at all. I get this is a sensitive issue, and that a reporter’s first instinct may be to not question anything. But that is a journalist’s job, if a journalist ever hopes of telling a truthful story.

I love journalism. I love investigating stories, exposing wrongs, writing stories about things that are generally underreported. But I’m also a bit obsessive. I enjoy looking at details and figuring things out. I understand that not everyone is like this, and that certainly not everyone who majors in Journalism and goes on to be a journalist is like this, besides the fact that I believe schools need to do a much better job at teaching these skills and instilling these needs.

Here’s the deal: journalists’ failure to confront their own biases before going into a story, their failure to check facts, their failure to make sure they have examined every possible angle of the situation – those failures all affect people. They affect the other young people with SMA who may now see ending their life as a lauded choice by society. If journalists would have included the other side, the side of people saying “No, this isn’t ok,” then young people with SMA would have both opinions to weigh. The journalists’ failures also affect the rest of able-bodied society, by dishing them up a huge, heaping plate of ableism that can sit comfortably in their stomach. Now, able-bodied society has another reason to think that life with a disability is horrible and unlivable. Now, the old man at my friend’s wedding thinks he’s right when he tells me it’s sad I’ve been in a wheelchair since I was tiny, even when I tell him it’s not.

I’m not asking journalists to perform an unbelievably difficult task here. Other journalists have done it, even other journalism students, so it’s hardly impossible. I’m simply asking them to step back and consider a few things when approaching a story that includes someone with a disability. I am asking them to think mindfully about who their sources are, where they’re getting their facts from, and how their own assumptions about their sources are informing the shaping of their story. All of these things, I think I can safely argue, are what journalists should be doing in the first place. And sure, maybe even with an informed journalist and a well-rounded story, there would still be ableist reactions from the consumers (as has been the case with some stories I have been featured in), but at least this sort of ableism wouldn’t be condoned by the media, which is arguably the biggest things that shapes our ideas and realities.

You can bet that the disability community is going to continue to be there each time an ableist story is perpetuated my the media, and you can bet that I am going to continue to do my part to educate my fellow journalists. But maybe instead of expecting marginalized people to disregard their own emotions to calmly educate you on the marginalized experience, we should start by having journalists educate themselves, so that the rest of society can be informed as well.

About

Hannah Soyer is a journalist and creative nonfiction writer, generally focusing on topics which she believes to be undercovered, and people she believes to be underrepresented. Hannah is currently working on degrees in Journalism and English at the University of Iowa. She was admitted to the Undergraduate Creative Writing Track, and hopes to join the MFA Creative Nonfiction Writing program in the fall of 2017. She has worked with the Iowa Youth Writing Project for the past two years, and IowaWatch, an investigative journalism organization. Her story with IowaWatch on Iowa schools’ compliance with the Americans with Disabilities Act was published in the Des Moines Register, the Cedar Rapids Gazette, and the Iowa City Press-Citizen, among other local newspapers.

Blog: https://hannahsoyer.wordpress.com/

Twitter: @soyernotsawyer

9/27 #CripTheVote chat: Storytelling and Voting

#CripTheVote Twitter Chat

Storytelling and Voting

Tuesday, September 27, 2016

5 pm Eastern

Guest host: Rooted in Rights

Hosted by Andrew Pulrang, Gregg Beratan, and Alice Wong, #CripTheVote Twitter chats explored various policy issues important to people with disabilities this year. Our 10th Twitter chat will take place on National Voter Registration Day and we are excited to have guest host Rooted in Rights in a conversation about storytelling and voting.

We recently partnered with Rooted in Rights and asked the disability community to share videos about their voting story and what political participation means to them. Our friends at Rooted in Rights will be featuring some videos featuring these stories us to share and enjoy.

Note: We’re using a specific hashtag for this chat, #CripTheVoteStories. Please be aware in case you forget and start using #CripTheVote!

You can find the questions for this chat in this post. The Twitter chat will be archived in Storify for anyone who would like to see it in chronological order at a later date.

How to Participate

Follow @AndrewPulrang @DisVisibility @GreggBeratan @rootedinrights on Twitter

When it’s time, search #CripTheVoteStories on Twitter for the series of live tweets under the ‘Live’ tab to follow the full conversation.

If you might be overwhelmed by the volume of tweets and only want to see the chat’s questions, check @DisVisibility’s tweets. Each question will tweeted about 4-5 minutes apart.

Use the hashtag #CripTheVoteStories when you tweet. If you can’t join us on 9/27, feel free to tweet anytime before or after with the hashtag.

If you don’t use Twitter, check out the live-stream:

http://twubs.com/CripTheVoteStories

Check out this explanation of how to participate in a chat by Ruti Regan: https://storify.com/RutiRegan/examplechat

TWEETS FOR 9/27/16 CHAT, 5 pm Eastern

Welcome to our 10th chat! Please remember to use the #CripTheVoteStories hashtag when you tweet, NOT #CripTheVote

If you respond to a question such as Q1, your tweet should follow this format: “A1 [your message] #CripTheVoteStories”

We are thrilled to have @rootedinrights share their storytelling expertise with us! #CripTheVoteStories

Storytelling comes in all forms (print, audio, video, visual, etc) and is an act that transmits culture & identity #CripTheVoteStories

Q1: Introduce yourself. Tell us something about your interest in #CripTheVoteStories

Q2 What makes a good story? Why do we need more disability narratives by actual disabled people? #CripTheVoteStories

Q3 What are some notable stories have you seen about disability during the Presidential election? #CripTheVoteStories

Q4 On the media’s coverage of disability issues during the election, what stories are missing? Are certain groups erased? #CripTheVoteStories

#CripTheVote partnered w/ @rootedinrights for a call for stories about political participation #CripTheVoteStories

Take a few minutes & check out these 3 short videos created by our friends at @rootedinrights! #CripTheVoteStories

Q5 What are your thoughts about the videos featuring the #CripTheVote community? Does it resonate with you? If not, why? #CripTheVoteStories

Q6 What’s your advice to disabled people on effective storytelling & getting our messages out? #CripTheVoteStories

Q7 How do we disseminate our stories to a broader audience? How can we reach wider platforms/spaces/venues? #CripTheVoteStories

Q8 How has social media changed the way you share & create disability narratives? Suggestions for first-time users? #CripTheVoteStories

Q9 What stories do you want to see more of about voting & people w/ disabilities? About disability in general? #CripTheVoteStories

Q10 How can we encourage more disabled people to tell their stories on their own terms w/ their unique voices? #CripTheVoteStories

This ends our #CripTheVoteStories chat. Many thanks to @rootedinrights & everyone who participated. Please continue the convo!

This Twitter chat will be archived in Storify later this evening. Look for the link with the hashtag #CripTheVoteStories

Rooted in Rights

Rooted in Rights produces videos and social media campaigns exclusively on disability rights issues. The Rooted in Rights team of filmmakers, writers, designers, and communicators includes the staff at our Seattle office, and our extended network of digital Storytellers who produce videos from locations around the world. Rooted in Rights social media sites and website are platforms for people with disabilities, self-advocates and their friends, families and allies to learn, connect and organize for change. Source: http://www.rootedinrights.org/about/

Website: http://www.rootedinrights.org

Twitter: @rootedinrights

Instagram: @rootedinrights

Facebook: https://www.facebook.com/rootedinrights

YouTube: https://www.youtube.com/user/RootedInRightsVideo

#CripTheVote

Resources on voting and people with disabilities:

http://disabilitythinking.com/election-2016-cripthevote

#CripTheVote Facebook Page:

https://www.facebook.com/CripTheVote/

A note on language and why we use the term ‘crip’

http://disabilitythinking.com/disabilitythinking/2016/3/28/cripthevote-notes-on-crip

#CripTheVote is a nonpartisan campaign to engage both voters and politicians in a productive discussion about disability issues in the United States, with the hope that Disability takes on greater prominence within the American political landscape.

While #CripTheVote is a nonpartisan project, we understand that many people have already developed preferences for particular candidates. This is great–we only ask that everyone is respectful in their interactions with each other. Our primary focus here is on increasing engagement with disability issues as a part of American politics and on the need for that we are all in agreement!

Please note we do not represent the entire disability community nor would we ever claim to do so. There are many ways to create social change and engaging in conversation is one approach.

9/19 #CripTheVote chat: Political Participation and First-Time Voters

#CripTheVote Twitter Chat

Political Participation & First-Time Voters

Monday, September 19, 2016

7 pm EST

Guest hosts: Rock the Vote and

the American Association of People with Disabilities (AAPD)

Hosted by Andrew Pulrang, Gregg Beratan, and Alice Wong, #CripTheVote Twitter chats explored various policy issues important to people with disabilities this year. For our 9th Twitter chat, we discuss political participation and how to support and encourage first-time disabled voters. We are delighted to have Rock the Vote and the American Association of People with Disabilities (AAPD) as our guest hosts.

You can find the questions for this chat in this post. The Twitter chat will be archived in Storify for anyone who would like to see it in chronological order at a later date.

How to Participate

Follow @AndrewPulrang @DisVisibility @GreggBeratan @RockTheVote @AAPD on Twitter

When it’s time, search #CripTheVote on Twitter for the series of live tweets under the ‘Live’ tab for the full conversation.

If you might be overwhelmed by the volume of tweets and only want to see the chat’s questions, check @DisVisibility’s tweets. Each question will tweeted 4-5 minutes apart.

Use the hashtag #CripTheVote when you tweet. If you can’t join us on 9/19, feel free to tweet anytime before or after with the hashtag.

If you don’t use Twitter, check out the live-stream: http://twubs.com/CripTheVote

Check out this explanation of how to participate in a chat by Ruti Regan: https://storify.com/RutiRegan/examplechat

INTRODUCTORY TWEETS for 9/19/16 chat

Welcome to our 9th chat! Please remember to use the #CripTheVote hashtag when you tweet.

If you respond to a question such as Q1, your tweet should follow this format: “A1 [your message] #CripTheVote”

We are thrilled to have @AAPD & @RockTheVote join us to discuss political participation #CripTheVote

We are also interested in supporting first-time voters & encouraging them to become involved in the democratic process #CripTheVote

QUESTIONS for 9/19/16 #CripTheVote Chat

Q1 What does ‘political participation’ mean to you? How would you describe it to someone who is new to this subject? #CripTheVote

Q2 What ways do you currently engage in political participation as a disabled person? #CripTheVote

Q3 Why do you think some disabled people don’t vote or participate in the political process? #CripTheVote

Q4 If you voted before, why do you vote? What’s your advice to people thinking about voting for the first time? #CripTheVote

Q5 If you’ve never voted before, please share why you haven’t or don’t want to. What questions do you have about voting? #CripTheVote

Q6 What kinds of voter education or outreach do you want for people w/ disabilities? What resources do disabled voters need? #CripTheVote

Historically many minorities & marginalized populations have been disenfranchised in the voting & political participation #CripTheVote

Q7 How can we help disabled ppl who are non-citizens, under conservatorship, or have a felony conviction engage politically? #CripTheVote

Q8 How do we ensure all diverse & multiply marginalized disabled ppl have access to power & the political process? #CripTheVote

Civil society is a public space btwn the individual, private sector & govt where people can come together, debate & take action #CripTheVote

Q9 Why should disabled people engage and participate in civil society? What is the incentive to get involved? #CripTheVote

Q10 Is the visibility of disabled people being involved in public spaces & local groups/communities important & valuable? Why? #CripTheVote

This ends our #CripTheVote chat. Many thanks to everyone who participated. Please feel free to continue the convo!

This Twitter chat will be archived in Storify later this evening. Look for the link with the hashtag #CripTheVote

ADDITIONAL LINKS

Democracy Class, Rock the Vote

https://www.rockthevote.com/get-involved/democracy-class/

Voting Assistance, Rock the Vote

https://www.rockthevote.com/get-informed/elections/

REV UP: Register, Educate, Vote and Use your Power

American Association of People with Disabilities (AAPD)

http://www.aapd.com/REVUP

Political Engagement and Activism, Pew Research Center

http://www.people-press.org/2014/06/12/section-5-political-engagement-and-activism/

Other Forms of Political Participation, Boundless.com

https://www.boundless.com/political-science/textbooks/boundless-political-science-textbook/political-participation-and-voting-9/voting-as-political-participation-67/other-forms-of-political-participation-374-4271/

About: American Association of People with Disabilities (AAPD)

The American Association of People with Disabilities (AAPD) is a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities. The REV UP Campaign aims to increase the political power of the disability community while also engaging candidates and the media on disability issues. REV UP stands for Register! Educate! Vote! Use your Power!

About: Rock the Vote

Rock the Vote is the largest nonpartisan, nonprofit organization in the country driving the youth vote to the polls. Since 1990, Rock the Vote has fused pop culture, music, art and technology to fulfill its mission of building long-term youth political power. During the past six Presidential elections, Rock the Vote ran the largest voter registration drives for young people and has partnered with more than 25,000 partners through its online, multi-lingual voter registration tool. Rock the Vote is dedicated to mobilizing the vote, protecting voting rights and advocating for an electoral process and voting system that works for the Millennial generation, America’s largest and most diverse population in history. To get Rock the Vote updates on upcoming events, election reminders and candidate, visit RocktheVote.com. Engage on social media, by following Rock the Vote on Facebook, Twitter and Instagram at @rockthevote.

About: #CripTheVote

Please note we do not represent the entire disability community nor would we ever claim to do so. There are many ways to create social change and engaging in conversation is one approach.

#CripTheVote Links

Resources on voting and people with disabilities:

http://disabilitythinking.com/election-2016-cripthevote

#CripTheVote Facebook Page:

https://www.facebook.com/CripTheVote/

A note on language and why we use the term ‘crip’

http://disabilitythinking.com/disabilitythinking/2016/3/28/cripthevote-notes-on-crip

9/12 Twitter Chat: Assisted Suicide, Bioethics, and Disabled Lives

Disability Visibility Project™ Twitter Chat

Assisted Suicide, Bioethics, and Disabled Lives

Guest Host: Ing Wong-Ward, Co-Collaborator, Project Value

Monday, September 12, 2016

4 pm Eastern (U.S.)

The Disability Visibility Project is proud to partner with the Co-Collaborators of Project Value in a discussion about assisted suicide, ableism, bioethics, and disabled lives. Ing Wong-Ward, a Co-Collaborator of Project Value, will be the guest host in addition to other Co-Collaborators participating during the Twitter chat.

Project Value launched this past July on Facebook featuring personal stories by disabled Canadians. The six Co-Collaborators of Project Value are Sandra Carpenter, Catherine Frazee, Audrey J. King, Jeffrey Preston, Tracy Odell, and Ing Wong-Ward. Their July 25, 2016 post describes the mission and reason for this video series:

As we enter complex discussion in Canada about doctor-assisted suicide, we worry that Canadians are only getting one side of the disability story – that death is a natural choice for these poor suffering disabled people. But this story doesn’t speak to the experiences of many with disabilities.

This project seeks to explore a different perspective; to share stories and experiences that contradict the narrative that disability is a fate worse than death.

This is about projecting our value.

Right now Project Value’s videos are only on Facebook. Check out their videos here: https://www.facebook.com/projectmyvalue/

How to Participate

Follow @DisVisibility and @ingwongward on Twitter

Use the hashtag #ProjectValue when you tweet. To follow the conversation from this chat, click on the ‘Live’ tab for this hashtag on Twitter.

If you only want to respond to the questions, check @DisVisibility’s timeline during the chat. The questions will be tweeted several minutes apart. It can be less overwhelming this way.

Check out this explanation of how to participate in a chat by Ruti Regan: https://storify.com/RutiRegan/examplechat

If you don’t use Twitter and want to follow the conversation along in real-time, check out the live-stream: http://twubs.com/ProjectValue

9/12 Twitter Chat Questions

Welcome to the #ProjectValue chat w/ @DisVisibility & guest host @ingwongward. Please note: we will discuss suicide, ableism, & dying.

Ableism (also known as disablism) is the discrimination or prejudice against people who have disabilities. #ProjectValue

For a discussion on ableism & assisted suicide, check out this essay by the late Stella Young https://www.theguardian.com/commentisfree/2013/oct/18/disability-euthanasia-assisted-dying #ProjectValue

The #ProjectValue chat may be triggering for many. Please practice self-care and feel free to take a break or leave if needed.

If you respond to a question such as Q1, your tweet should follow this format: “A1 [your message] #ProjectValue”

Q1 In your experience, how does your society view disabled people like yourself and others in the disability community? #ProjectValue

Q2 If you are a disabled person, how do YOU value your life? How are our lives valuable, unique and significant? #ProjectValue

Q3 Does ableism undermine the way you see yourself? How does it impact the choices, services, and freedoms you have access to? #ProjectValue

Q4 Many countries have assisted suicide/dying laws or legislation in the works. How will these laws impact disabled people? #ProjectValue

Q5 How do conversations about #AssistedSuicide miss the mark on understanding the lived experience of disability? #ProjectValue

Q6 What are your thoughts on the framing of ‘choice’ ‘autonomy’ and ‘freedom’ in the #AssistedSuicide debate? Is it ableist? #ProjectValue

Q7 Often disability is confused w/ terminal illness or presumed to cause great suffering. Does this concern you? #ProjectValue

Many bioethicists believe it is ethical to “assist” disabled people or infants to die given their ‘quality of life’/prognosis #ProjectValue

Q8 How do people’s perceptions about our quality of life impact choices about #AssistedSuicide? What can be done about this? #ProjectValue

Q9 What do you want as an alternate to #AssistedSuicide that provides the supports you need to live well? #ProjectValue

#ProjectValue uses storytelling & social media as an advocacy tool.

Q10 What are some other effective means re-framing narratives about disabled lives? What other tools & approaches are needed to push back?

This concludes our chat! Please keep the convo going. Thank you to our guest host @ingwongward & all the collaborators of #ProjectValue!

Additional links

Catherine Frazee (2016). The Last Chapter. Ottawa Life Magazine. http://www.ottawalife.com/2016/06/the-last-chapter/

Aaron Broverman. (August 10, 2016). Project Value Asserts Disability Is Not Worse Than Death. New Mobility: http://www.newmobility.com/2016/08/project-value-asserts-disability-is-not-worse-than-death/

Harriet McBryde Johnson. (February 16, 2003). Unspeakable Conversations. New York Times: http://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html?pagewanted=all

Christy Duan. (May 1, 2016).Choosing Hospital Over Heaven: A Life Worth Living—Is death better than locked-in syndrome? Medpage Today: http://www.medpagetoday.com/publichealthpolicy/ethics/57625

Stella Young. (October 18, 2013). Disability – a fate worse than death? ABC Ramp Up: http://www.abc.net.au/rampup/articles/2013/10/18/3872088.htm

What is unbearable? (August 6, 2016). The Economist: http://www.economist.com/news/science-and-technology/21703359-some-data-about-emotional-issue-what-unbearable?fsrc=scn/tw/te/pe/ed/whatisunbearable

Bill Peace. (August 14, 2016). Assisted Suicide: A life-style Choice. Bad Cripple: http://badcripple.blogspot.com/2016/08/assisted-suicide-life-style-choice.html

Merrit Kennedy. (June 18, 2016). Canada Legalizes Physician-Assisted Dying. National Public Radio. http://www.npr.org/sections/thetwo-way/2016/06/18/482599089/canada-legalizes-physician-assisted-dying

Ian MacLeod. (June 27, 2016). “‘My biggest fear is I will become trapped’: Woman, 25, goes to court to overturn assisted-dying restrictions.” National Post: http://news.nationalpost.com/news/canada/canadian-politics/my-biggest-fear-is-i-will-become-trapped-woman-25-goes-to-court-to-overturn-assisted-dying-restrictions

Liz Carr. (2016). Disabled People’s Organizations Do Not Support Assisted Suicide! Not Dead Yet UK: http://notdeadyetuk.org/disabled-peoples-organisations-do-not-support-assisted-suicide/

Julia Bryant. (March 11, 2016). California Becomes Fifth State to Pass Right to Die Legislation. Law Street Media: http://lawstreetmedia.com/news/california-becomes-fifth-state-pass-right-to-die-legislation/

Marilyn Golden. Why Assisted Suicide Must Not Be Legalized. Disability Rights Education & Defense Fund: http://dredf.org/assisted_suicide/assistedsuicide.html

Guest Blog Post: Collecting the Scraps

‘Collecting the Scraps’: Intellectual Disability & Irish History

By David Kilgannon

I never intended to become involved in the creation of a history of the experience of people with intellectual disabilities in Ireland. Despite growing up with an intellectually disabled aunt, such an effort seemed simultaneously difficult, messy and filled with sad stories. Instead, when I enrolled as an undergraduate I gravitated towards the history of law. You see, the history of the law had rules, it followed conventions. To be ‘to the letter of the law’ meant to do it exactly right, and something about that idea really appealed to my Type A personality. However, one day changed all that. After a charity walk for a local disability resource centre I began talking with some of the parents of the centre’s service-users. They talked about their experiences as semi-professional disability activists, campaigning for resources from a frequently indifferent state. Then they asked me: ‘You studied history, was our experience that exceptional?’ I tried to politely explain that this wasn’t my area. I was studying clear cut laws, not people’s experiences, but I would find the answer for them. The next week, I began to search for a history book on disability in Ireland, and failed. Despite Ireland being the first state outside the US to host the Special Olympics, despite the numerous investigations into conditions and practices affecting the disabled, there was no one really telling the ‘story’ of the intellectually disabled in Ireland. My interest piqued by this gap, I was lucky enough to intern in the Irish national health service, the Health Service Executive, where my brilliant mentor Ms. Caoimhe Gleeson helped me to become immersed in the policies and legislation affecting people with an intellectual disability in twenty-first century Ireland. I loved the process and challenges around policy making, but the lack of history for this community continued to reside in the back of my mind.

Indeed, the idea that there was nothing out there to provide context to the experiences of people with intellectual disabilities in Ireland really upset me. I had taken classes in Human Rights Law, where one of the most fundamental things we were taught was the right of everyone to be a part of a wider community. How could people with intellectual disabilities, and those involved in campaigning for their rights, be a community if they didn’t have a history? Although I hated this gap in our historical knowledge, I was definitely not interested in filling it. That was someone else’s job. Yet, here again I was shaken out of my complacency. A few weeks later, when working on my Master’s dissertation on AIDS activists in Ireland, a line from a handwritten book of testimonials lodged itself in my mind. ‘I don’t need pity, I don’t need sad looks. I need you to give me a hand, to bake me a cake, and help me tell my story.’ Sitting in that archive, I made a resolution. I may not be the best person to collect stories for a history of people with intellectual disabilities in Ireland. Despite this I was going to try, and hopefully this might attract others into studying this topic.

Indeed, once I started to dig I realised that Ireland has a unique history of engagement with intellectual disability, different from both North America and the rest of Europe. Firstly, there was the legacy of British colonialism. This left Ireland with one of the most extensive network of Asylum services in Europe, prompting a trend where disabled children were sent to these mental hospitals. Hospital records show a large percentage of each hospital contained the ‘defective children,’ a trend which continued until the mid-1970s. A second factor was the dominance of the Catholic Church in Ireland. The church remained incredibly influential from the state’s foundation in 1922 until the mid 1990s. This shaped the way the state planned services for the intellectually disabled, frequently relying on Catholic religious orders to ‘step in’ and set up an institution where there was deficiency in state services. A third factor was the relative poverty of the Irish state for most of the twentieth century. There are numerous examples of where the state said that it could not step in due to budget issues. For example, the case of Veronica Loftus, a 32 year old intellectually disabled woman who died in an apartment in Dublin in 1961. At the inquiry into her death, it was found that she was severely malnourished and weighed only 56 pounds at the time of her death. Yet, in the Irish Parliament (Dáil Éireann) the Minister of Health said there was nothing he could as she was already receiving a disability allowance, and he criticised her family for not stepping in to help her.

There are so many different strands to this story that at times it can feel overwhelming. A sociologist friend of mine once condemned my work as ‘collecting scraps’ of people’s stories and experience. To her, my archive searches and oral histories lacked value as they were not large-scale and lacked the critical methodologies of her research. Even though she was criticising me, her idea of ‘Collecting the scraps’ continues to strike me as such a beautiful way of describing my research. In collecting the small samples of experience from across the twentieth century, I am trying to gather metaphorical scraps, in an attempt to weave a wider patchwork that reflects the diversity of experience throughout this period.

Bio

David Kilgannon is a Wellcome Trust PhD researcher in the History Department of the National University of Ireland, Galway. He was previously a Hardimann Scholar and a Wellcome Trust MA student. His research looks at the varied experiences of persons with intellectual disabilities in Ireland from 1947 to 1996. His previous research looked at the experience of AIDS activists in Ireland from 1983-9.

Academia.edu: https://insight-centre.academia.edu/DavidKilgannon

Twitter: @david_kilgannon

#CripTheVote: Call to Action

The Problem

Thousands of people with disabilities in California living under conservatorship may not realize they are disqualified from voting AND that their voting rights can be restored thanks to a law that came in effect January 2016 (see below).

Election Day is less than 80 days away!! People with disabilities in California living under conservatorship need to be notified by the state of their rights and how to restore them as soon as possible. This should be a requirement of the State of California.

The Ask*

Tweet California Secretary of State Alex Padilla @CASOSvote and demand that the state notify all people with disabilities impacted by this new law. Tell him what you think. Share the bear image from this website as well!

Why are we focusing on the Secretary of State? Secretary Padilla is the Chief Elections Officer for the State of California and oversees the Election Division. We don’t know if this is possible or the specifics of how notification would work, but that’s not our focus. At the very least there needs to be increased and targeted voter outreach and education to Californians with disabilities.

If you have the time, you can also Tweet some other California elected officials about this issue and keep the pressure on Secretary Padilla!

Governor Jerry Brown: @JerryBrownGov

Lieutenant Governor Gavin Newsom: @GavinNewsom

Senator Dianne Feinstein: @SenFeinstein

Senator Barbara Boxer: @SenatorBoxer

Sample Tweets to Secretary of State Alex Padilla

@CASOSvote some 50,000 disabled Californians may not know that they are disqualified to vote or how to fix it. Help them! #CripTheVote

@CASOSvote after SB 589 became law, why didn’t you do targeted voter ed & outreach to disabled people under guardianship? #CripTheVote

Hey @CASOSvote, disabled people have the right to participate in democracy! Make SB 589 work. Notify them immediately! #CripTheVote

Yo, @CASOSvote! Disabled people under conservatorship want to #CripTheVote. You must notify & inform them on how to restore their rights!

Hey @CASOSvote: you said you supported SB 589! Disabled people want to vote this November! Do the right thing–it’s your job! #CripTheVote

Yo, @CASOSvote! What’s the point of having a Voters Bill of Rights if disabled ppl don’t even know they are disqualified? #CripTheVote

@CASOSvote All disabled Californians have the right to vote. Make SB 589 work & contact the ppl under under conservatorship #CripTheVote

Non-Twitter Options

You can email the Elections Division staff: http://www.sos.ca.gov/elections/contact/email-elections-division/

You can also call or write the Elections Division of the State of California:

Elections Division
1500 11th Street, 5th Floor
Sacramento CA 95814
Phone: (916) 657-2166
Fax:(916) 653-3214
Monday through Friday
8:00 a.m. to 5:00 p.m.

Note*

There are certainly legal and privacy issues surrounding notification and in no way are we experts on how to approach this. Nor are we political insiders with specific agendas and methods of navigating state politics. However, we do want to advocate for additional outreach by the Elections Division to this specific population in the disability community and/or other means the State can serve voters with disabilities effectively.

Background Information

In October 2015, California Governor Jerry Brown signed Senate Bill 589, a law that provides voting rights protections for approximately 50,000 Californians with disabilities who are under conservatorship. Authored by San Diego Senator Marty Block,

SB 589 protects the voting rights of people with disabilities by no longer basing the revocation of the right to vote on whether a person can fill out a voter registration form, but instead on whether a person can express a desire to participate in the voting process. The new standards are based on a series of recommendations for defining and assessing capacity to vote adopted by the American Bar Association in 2007 (source: American Civil Liberties Union of Northern California 10/10/15).

Check out this recent story about David Rector, a person with multiple disabilities under conservatorship, and his request to a judge in San Diego Superior Court to restore his voting rights. In addition to Rector’s request, another advocacy group filed a complaint with the U.S. Department of Justice asking that the State of California be required to notify people with disabilities under conservatorship about their voting status

Additional Links

Senate Bill 589: http://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201520160SB589

Elections and Voter Information: State of California

http://www.sos.ca.gov/elections

Voter Bill of Rights, State of California

http://www.sos.ca.gov/elections/voter-bill-rights/

Questions?

Email Alice Wong: DisabilityVisibilityProject@gmail.com

Now is the time.

Let’s #CripTheVote!!!

9/1: #CripTrek Twitter Chat

Hey disabled Star Trek fans – let’s let CBS know we’re here and we want disability representation in their new series, Star Trek: Discovery! Using two hashtags, #StarTrekDiscovery and #CripTrek, share an idea, picture, video, audio recording, piece of writing, or other digital representation of YOU and your love of all things Trek. Maybe a pic of the Vulcan salute, a poem confessing your Spock and Bones ship, or a video acting out your favorite scene – be creative!

Tweet at @StarTrekCBS and tell them why you want a disabled character in the cast! Post your contribution with the hashtags on Twitter or Instagram to make sure everyone sees your creation. You can also just share overall thoughts about disability and Trek using #CripTrek – we will keep the conversation going.

On September 1st at 7pm EST, Erin Hawley of The Geeky Gimp is will be hosting a Star Trek and disability Twitter chat along with Alice Wong of the Disability Visibility Project. For more about The Geeky Gimp: http://geekygimp.com

To join that chat, log onto Twitter and follow @geekygimp. Starting at 7pm EST, Erin will start posting the questions below and you can answer using the #CripTrek and #StarTrekDiscovery hashtags.

Questions:

Q1 What is the appeal of Star Trek? Why does it resonate with you as a fan? #CripTrek

Q2 Have you seen the sneak peak for #StarTrekDiscovery? What do you think? http://www.cbs.com/shows/star-trek-discovery/news/1005509/star-trek-discovery-announced-as-name-of-new-series/

Q3 What would you like to see in future Trek storylines? What other diverse characters do you want to see? #CripTrek

Q4 Who are your favorite disabled characters (recurring or guest) in Star Trek and why? #CripTrek

Q5 How do you think Star Trek has portrayed disability so far? Any problematic aspects to representation of disability? #CripTrek

Q6 In sci-fi, disability is often used as a metaphor. What are your thoughts on ‘disability as metaphor’ & its usefulness? #CripTrek

Q7 Why is it important to include disability in Star Trek, or any sci-fi universe? #CripTrek

Q8 .@SFdirewolf created the hashtag #TheFutureIsDisabled for the @DisVisibility project. What does that phrase mean to you? #CripTrek

Guest Blog Post: Leg Envy/Arm Prejudice

Leg Envy/Arm Prejudice

By Heidi Johnson-Wright

All body parts are not created equal. This is often the opinion of non-gimps, especially when they take a break from their normal lives to observe gimps. Like when they stand on fully functioning legs waiting for their macchiatos, then take a window seat at the ADA table to sip and watch gimps pass by outside.

Before you know, a gimp rolls by in a chair. That gimp might be a CEO dressed in a bespoke suit and handmade Italian leather shoes on his way to a meeting at his blue chip company. Or she might be wearing a vintage Comme des Garcons dress and carrying a Fendi baguette while headed to a show of her artworks at a gallery. Or perhaps it’s just a regular Joe or Jane gimp. Doesn’t really matter, because the non-gimp’s instant reaction is typically something like:

“That poor gimp, confined to a wheelchair because of his/her useless legs.”

Legs, legs, legs! Unless you’re a Rockette or an Olympic long-jumper, why is this pair of body parts so gosh darn important? Why do non-gimps insist that these below-the-waist appendages are the only credible, non-pitiable way to get around in the world?

I know what you’re thinking, dear reader. I’m overly sensitive because I use a wheelchair. I’m bitter because I’ll never get to stand three hours in line to ride 90 seconds on a rollercoaster. I’m angry because I’ll never get to feel the excruciating tearing away of my ACL while playing intramural basketball.

Okay, perhaps you’re a little bit right. But only a little bit, because my main point is this: what in the Sam Hill is wrong with arms? Why do non-gimps never see a gimp pass by and think:

“That poor gimp, can’t wash her hair because of useless arms.”

Yes, dear reader, some of us wheelchair-using gimps also have arms that don’t measure up to non-gimp standards. In my case, the juvenile rheumatoid arthritis that jolted my immune system into overdrive destroyed not only the joints in my legs, but also the joints in my arms. It’s been 40 years since I last touched the top of my own head.

I have to do a lot of things with aids for daily living, or ADLs for short. What’s an ADL, you ask? It’s a 50 cent piece of plastic that you order out of a catalog, pay $50 for and use to compensate for your gimped-up arms.

There are long-handled comb ADLs, long-handled toothbrush ADLs, long-handled shampoo applier ADLs, make-up brush ADLs, foot scrubber ADLs, dressing stick ADLs and of course, the ADL probably everyone has seen: reacher stick ADLs.

I have multiple cabinets, drawers and closets in my house filled with ADLs, because each is tailored to a specific task. I mean, forget about trying to use a spoon with an extended handle to put on your socks.

There are even some things that no ADL can compensate for. For instance, I could spend the gross national product of Guam on ADLs and still never be able to use a Q-tip for the task that the Q-tip company tells you – nudge, nudge; wink, wink – to never use it for.

So the next time you see me motoring by in my chair, don’t assume that non-functioning legs have put me in a wheeled, mechanical prison of despair.

Instead, assume that my closets are filled to bursting with 50 cent pieces of plastic.

Bio

Heidi Johnson-Wright

I’m a lawyer but please don’t hold that against me. My day job is working as an ADA compliance professional for a large metropolitan area. I’ve had severe rheumatoid arthritis since childhood and am a full-time power wheelchair user. I’ve been a published free-lance writer for 24 years, writing mostly book and music reviews, as well as stories on accessible travel. I currently have a completed memoir manuscript that I am pitching to literary agents. I’m a native Clevelander who got smart and moved to Miami 16 years ago. My husband and I are two of the handful of gringos who live in Little Havana with our two kitties and a few renegade opossums.

8/29 #CripLit chat: Disabled Writers, Ableism & the Publishing Industry

#CripLit Twitter Chat

Disabled Writers, Ableism & the Publishing Industry

Co-hosts: Nicola Griffith @nicolaz

& Alice Wong @DisVisibility

Guest host: Denarii Monroe @writersdelite

Monday, August 29, 2016

4 pm Pacific/ 7 pm Eastern

The Disability Visibility Project is proud to partner with novelist Nicola Griffith in our second #CripLit Twitter chat for disabled writers. Nicola Griffith is the creator of the #CripLit series and the DVP is the co-host/supporting partner. For our second chat, we are both excited to have guest host Denarii Monroe, freelance writer, aspiring screenwriter, and activist.

All disabled writers are welcome to participate in the chat including reporters, essayists, poets, cartoonists, bloggers, freelancers, unpublished or published. We want to hear from all of you! Check the #CripLit hashtag on Twitter for announcements of future chats that will focus on different genres or topics.

How to Participate

Follow @nicolaz @DisVisibility @writersdelite on Twitter

Use the hashtag #CripLit when you tweet. If you only want to respond to the questions, check @DisVisibility’s timeline during the chat. The questions will be tweeted several minutes apart.

Check out this explanation of how to participate in a chat by Ruti Regan: https://storify.com/RutiRegan/examplechat

If you don’t use Twitter and want to follow along in real-time, check out the live-stream: http://twubs.com/CripLit

#CripLit Tweets for 8/29 chat

Welcome to #CripLit! Created by @nicolaz, we will discuss ableism & the publishing industry. Our guest host for this chat is @writersdelite

When we mention the publishing industry we include agents, editors, booksellers, publishers, media (print and online publications) #CripLit

…production and distribution companies (for screenwriters), etc. #CripLit

If you respond to a question such as Q1, your tweet should follow this format: “A1 [your message] #CripLit”

Q1 Please introduce yourself, describe your background in writing, and any links about you & your work #CripLit

Q2 What made you want to become a writer? How did you start & what are some of the major issues you face now in your writing? #CripLit

Q3 How is the publishing industry ableist/racist/sexist/cis-normative (among others)? Share your thoughts and experiences. #CripLit

Q4 What barriers (physical, cultural, emotional) do you face as a disabled writer? #CripLit

Q5 Were you expecting the barriers you’ve encountered? What did you do? How did you feel? How did organisers respond? #CripLit

Q6 If you are a freelancer or are published, what is your advice to disabled writers who want to get their work out? #CripLit

Q7 In your interactions w/ the industry, how does ableism inform their ideas of what it takes to be a ‘professional’ writer? #CripLit

Q8 What’s your advice to other disabled writers on navigating and making connections w/ the publishing industry? #CripLit

Q9 In your opinion, how has ableism shaped the kinds of #CripLit published & authors that are promoted?

Q10 What messages do you want to send to those in the publishing industry (agents, book buyers, editors) about #CripLit & ableism?

This concludes our 2nd #CripLit chat! Please keep the convo going. Thank you very much to our guest host @writersdelite!!

Be sure to tweet co-hosts @nicolaz @DisVisibility questions, comments, and ideas for the next #CripLit chat

Additional Links

Disability Art, Scholarship and Activism

Nicola Griffith (5/18/16)

Writing Culture Has An Ableism Problem

Denarii Monroe (6/14/16)

Dear Able Friends: I Am Not Your Inspiration Porn

Karrie Higgins (10/5/15)

4 Ways the Publishing Industry Promotes Ableism

Katherine Lampe (10/9/15)

Fat Writers: On Privilege, Ableism, and Humanity

Kristian Wilson (5/19/16)

Writing program association continues to debate access for members with disabilities

Josh Logue (3/28/16)

About

Denarii Monroe

Denarii (rhymes with “canary”) is an aspiring screenwriter, freelance writer, and a weirdo born, raised, and based in New York. She’s a Rutgers University alum and a two-year Pace University dropout; she studied English and Adolescent Education, respectively. She’s written for BlogHer, Black Girl Dangerous, Everyday Feminism, Wear Your Voice Mag, Extra Crispy (a subsidiary of Time, Inc.), and is a regular contributor at Ravishly. You can follow her on Facebook and find her on Twitter and Instagram ([at]writersdelite). Selfies, pictures of her dog named Dog, the new addition to her family – a kitten named Cat, raving about Matthew Gray Gubler, and ranting (or retweeting) about the writing process and racist, ableist, classist, fat-antagonistic heteropatriachary. She loves Buffy the Vampire Slayer, as well as soul food, red wine, cooking and baking, and the blues. Hanson is her favorite band ever (yes, that Hanson).

Source: http://www.ravishly.com/contributors/9223

Nicola Griffith is a native of Yorkshire, England, where she earned her beer money teaching women’s self-defence, fronting a band, and arm-wrestling in bars, before discovering writing and moving to the US. Her immigration case was a fight and ended up making new law: the State Department declared it to be “in the National Interest” for her to live and work in this country. This didn’t thrill the more conservative powerbrokers, and she ended up on the front page of the Wall Street Journal, where her case was used as an example of the country’s declining moral standards.

In 1993 a diagnosis of multiple sclerosis slowed her down a bit, and she concentrated on writing. Her novels are Ammonite (1993), Slow River (1995), The Blue Place (1998), Stay (2002), Always (2007) and Hild (2013). She is the co-editor of the BENDING THE LANDSCAPE series of original short fiction. Her multi-media memoir, And Now We Are Going to Have a Party: Liner Notes to a Writer’s Early Life, is a limited collector’s edition. Her essays and short fiction have appeared in an assortment of academic texts and a variety of journals, including Nature, New Scientist, Los Angeles Review of Books and Out. She’s won, among others, the Washington State Book Award, the Tiptree, Nebula, and World Fantasy Awards, the Premio Italia, and six Lambda Literary Awards.

Source: https://nicolagriffith.com/2014/02/24/about/

Alice Wong is a San Francisco-based disability advocate, freelance journalist, television watcher, cat lover, and coffee drinker. Alice is the Founder and Project Coordinator for the Disability Visibility Project (DVP), a community partnership with StoryCorps and an online community dedicated to recording, amplifying, and sharing disability stories and culture. Currently she is a co-partner with Andrew Pulrang and Gregg Beratan for #CripTheVote, a non-partisan online campaign encouraging the political participation of people with disabilities. She is also a Staff Research Associate at the Department of Social and Behavioral Sciences, UCSF.