Bright yellow image with black text centered that reads: "#CripTheVote Twitter Chat: Our Voices, Our Vote Americans with Disabilities and Political Participation. T #DemDebate Twitter Chat February 11, 2016, 8 pm Eastern/ 5 pm Pacific Follow @AndrewPulrang @DisVisibility @GreggBeratan on Twitter"

#CripTheVote: Democratic Debate Twitter Chat 2/11

The Disability Visibility Project and Disability Thinking will host their first Twitter chat this year following the 2016 Presidential Election. Please join us!

#CripTheVote: Our Voices, Our Vote

Americans with Disabilities and Political Participation

Democratic Debate

February 11, 2016

8 pm Eastern/ 5 pm Pacific

#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!

Note: we will be hosting another Twitter chat on February 13, 2016 for the Republican Debate.

How to Participate

When the debate begins, check out the live-stream: http://twubs.com/CripTheVote

Follow @AndrewPulrang @DisVisibility @GreggBeratan on Twitter for updates

Use the hashtags #CripTheVote and #DemDebate when you tweet

Additional information on voting and people with disabilities

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

A note on language and usage of the word ‘crip’:

https://www.wright.edu/event/sex-disability-conference/crip-theory

Questions? Media inquiries?

Email Alice: DisabilityVisibilityProject@gmail.com

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Dear Julianna: Interview with Emily Wolinsky and Laura Halvorson, Part 2

This is the second of a two-part interview with Emily Wolinsky and Laura Halvorson about Dear Julianna: Letters to Children from Adults with Neuromuscular Disabilities (NMD). They talk at length about their experiences being interviewed by People magazine about the project. Read part one of the interview where they talk about the origins of Dear Julianna and its purpose.

What was your experience like communicating with the reporter from People magazine? How did you prepare and what did you think of the article that featured quotes from your interview?

Emily: The Dear Julianna team chose to accept solicited interviews from CNN and PEOPLE. We tried with both outlets to thoughtfully explain our position to an audience of millions that includes people who see and support our mission, as well as people who consider it as backlash. We realize that not all people in this audience devote time to researching and analyzing both sides of the story. We were disappointed that the sources who solicited our interviews did not balance both sides of the story. It stunned us to be referred to as a “negative reaction” in both pieces.

Laura: I was a little distrusting from the get go due to the tone and perspective used on the CNN article and especially from Ally and Emily’s interview with CNN. I researched the journalists other work before the interview and quickly realized the angle the interview would take. I just reminded myself of our mission and what our intentions are as I knew we would be defending them. Unfortunately, everything that I said in the People Magazine interview was omitted from their article just like Ally Breuner’s responses that she gave to the reporter while wearing her bipap in the CNN interview including when I told the people magazine reporter that my doctor recently told me that I am “1 respiratory illness away from death and that the next step would be to get a trach which would mean I would have a poor quality of life, which has parallels to the prognoses Julianna’s doctors gave her.

In preparation for this interview, what did you hope for during your interaction with the mainstream media? Did you have any concerns or worries?

Emily: I think that I was naive in hoping that the mainstream media would give Dear Julianna a fair portrayal. In the conclusion of one of my emails to Nicole Egan I wrote:

I will be elated if the Snow family was somehow able to find hope, comfort and love in the over 100 letters that have been shared through this project.  I sincerely hope they can somehow be convinced that this project was founded with a compassionate and caring intent, namely to have complete strangers invest in a child, to relay that they want to see her “win” and live as long of a life as possible.  If the Snows choose to interpret the purpose of DJ differently, however, I respect their freedom to do so.  I just ask that they (and the media), in turn, respect our choice to promote awareness, provide invaluable insight and to commemorate the achievements of many with neuromuscular conditions by means of this project.

After both interviews, I felt defeated and had serious concerns. I could tell by the tone of the questioning that the reporters weren’t buying into our side and were coming at us from a much different and more antagonistic place. It was very hard to feel so powerless in both instances, especially when everyone working so hard on this project deserved appreciation for their accomplishments. I had a sinking feeling days before the articles were published that this project would not be spun in a positive light. It hurt my heart because this project is so beautiful and something that I am deeply proud of.

Laura: I hoped that they would portray our Dear Julianna campaign in a neutral light and let the public decide for themselves on what to think about or campaign. I did have concern that we would not be portrayed in a neutral or positive light. I wished the 2 mainstream media articles correctly portrayed our mission and intentions.

How do you think the media covers people with disabilities overall? What recommendations would you make to reporters on how to understand and cover the disability experience better?

Laura: There are a few sources that do a decent job portraying people with disabilities. We have to battle decades if not centuries of stereotypes of the disabled that we’re helpless and those of us with severe NMDs are all going to die. This is the myth most of society believes although due to life saving medical advances over the past few years people with NMDs are living longer on into adulthood. Many people with severe NMDs are living much longer than the expiration date their doctor’s gave them of dying before age 3 or 21 or whatever terminal or fatal prognoses they were given, many of whom were saved and had an improved quality of life due to a trach which is something many pulmonologists do not have updated research on.

Emily: The media does a very poor job covering people with disabilities overall. Individuals with disabilities who do not advocate for themselves are portrayed as objects – their dignity and humanity isn’t considered. Advocates who speak-out and try to provide a perspective on life with a disability are considered to be “angry cripples” with an “agenda”. In the case of Dear Julianna, our beautiful campaign celebrating life with disability was referred to as a “negative reaction”. How can over one hundred letters telling a young girl with a NMD that there is hope and the chance at a long and happy life be negative?

To put it in greater perspective, I came up with this analogy:

Have you ever encountered a child with a severe nut allergy? Parents who have children with this condition are incredibly protective, as would be expected. They go to great lengths to protect their child from not just nuts, but nut oils and nut dust. If a child with a severe nut allergy encounters nuts, the child will die. We can’t predict if the child will encounter the nuts or when, so for an able-bodied child with a nut allergy, would you refer to the child as terminally ill? The same occurs for a child with a severe NMD. It’s not the NMD that kills the child, it’s respiratory infections and illnesses that the child could catch that could kill them. No one knows when or if that will happen, but unlike the able-bodied child with a severe nut allergy, a child with NMD is referred to as terminally ill.

To continue the analogy, let’s say that parents who have been so overwhelmed with the possibility of the loss of their child to his or her nut allergy decide to forgo further treatment or management of this nut allergy. Let’s go farther and say that the parent would ask their child to guide them in making this choice. How would the media frame it then? Would the media turn the parents into heroes or villains? I’d bet my salary that those parents of an able-bodied child would be criticized to no end. Yet, a child with a severe disability is only seen as a future angel in heaven, so the message from the media is to comfort and support a family that has essentially given up on their child. It’s absolutely insulting to those who live with this disability. It’s wrong. And yes, it’s dangerously ableist.

Finally, if Julianna had a nut allergy instead of a NMD and Dear Julianna sent her letters from adults who had survived nut allergies and were treated for nut allergies, I highly doubt that the media would vilify them for doing so, but because we are giving a voice to people who are given so little value by the greater public, we are perceived to be angry cripples.

If I could sit down with all the major news outlets that people follow right now and provide them with recommendations, I would first recommend that they hire people who live a wide variety of disability experiences to write their stories on disability. I think change in the media must come from within. I’d also recommend that reporters consult with not just “medical experts” on disability, but on people who are living with the conditions they are writing about. And finally, I’d recommend that reporters consult with publishing guides like the DVP helped create for this purpose.

If you could speak directly to Julianna and her parents, what would you say to them about the article in People magazine and their feelings about Dear Julianna?

Emily: I think it would be so, so neat if Julianna had an opportunity to meet one of our letter writers. I know how powerful it was for me to meet adults with NMD when I was a child and learn about their lives and accomplishments. If I were to meet this beautiful little girl, I’d say, “Welcome to the NMD club! We are so happy to have you! Now let’s have some fun!”

If I were to have an opportunity to speak to Julianna’s parents I would probably apologize for unintended grief or pain that our letters may have caused them. I would thank them for inspiring a very large community to tell our stories, and I would tell them to never give up hope. And if they’d allow me, I’d introduce them to as many members of our very large community of adults with NMD, so they could hear our stories and learn from us.

Laura: I would tell them I’m sorry they are having to experience what they’re going through as it is an adjustment to cope with the transition and also a lot to deal with, especially when published research out there has not been up to date to keep up with medical advances and quality of life. Unfortunately, doctors are not aware of all up to date research. Our letters are here to provide information and hope while we wait for published medical research catches up with up to date information.

What are your plans for the future of  Dear Julianna?

Emily: To keep on keepin’ on until the letters stop coming in and the project feels like it needs to evolve into something different. 

Laura: To continue posting letters to share stories of people worldwide with NMDs. Who knows, maybe we’ll even get a letter from one of the greatest minds of our time, Stephen Hawking, who’s had ALS for over 52 years.

Is there anything else you’d like to share with the Disability Visibility Project?

Laura: Just that I appreciate the work and efforts of DVP as well as their efforts to change perceptions of PWDs with #CrippingTheMighty and other projects.

Emily: Dear Julianna is inspirational, but it is inspiration for a purpose and in my opinion, it is not the dreaded “inspiration porn”. Inspiration porn is momentary; it’s a brief kiss of sympathy mixed with sorrow. Our letters are written by people with neuromuscular disabilities and are 100% our stories. They aren’t written by able-bodied people looking in from the outside, projecting their own need for reassurance and strength on an another who is assumed to exist without. These letters are strikingly beautiful and ordinary at the same time. They provide a three-dimensional view of a person with a disability that encompasses history, triumph, success, and loss. These letters prove that Dear Julianna is on the right side of history, and that’s inspirational.

The team prepared for days before the interview, fielded practice questions, and spent hours developing written statements. In comparing all that we prepared and delivered to what was actually printed, there is no doubt that this was an unfair portrayal. Our team has learned from these experiences, and has decided to not spend more wasted time and energy speaking to tabloid and/or sensational news outlets as we move forward.

About 

Emily Wolinsky came up with the concept of writing letters in kid-speak to Julianna. She co-founded Dear Julianna with friends involved with the non-profit association she is President of, NMD United. NMD United is sponsoring the project, and the organization’s mission is to foster meaningful interactions between adults with neuromuscular disabilities, and provide them with informational resources to increase self-direction while promoting independence.

A young white woman against a black background, she has long brown reddish hair. She is smiling at the camera and wearing a gray top with a white lace design on the front

Emily Wolinsky

“This is the perfect collaboration and I’m so honored to be involved with both Dear Julianna and NMD United. The people on our team are incredibly talented and compassionate. The individuals who send letters provide me with such hope and joy for families with young children, who are going to learn so much about living from us. I wish I had more hours in the day to work on this effort and potentially save many children’s lives,” said Emily.

Wolinsky owns her own home in Austin, Texas, lives with her boyfriend, roommate, and two dogs. Emily’s professional background is in non-profit development, outreach, and education. Her full-time day job is as a Student Accessibility Services Specialist at Austin Community College. Oh, and Emily Wolinsky has a diagnosis of Spinal Muscular Atrophy, type 2/3. She uses a power wheelchair, is non-weight bearing, requires 46 hours of attendant care per week, and requires nighttime ventilation.

Headshot of a young white woman with blue eyes with chin-length golden brown hair. She is in a wheelchair and a headrest is behind her.

Laura Halvorson

Laura Halvorson is the U.S. Communications Director of Dear Julianna and one of the co-founding members of Dear Julianna. When she and some of her peers with neuromuscular disease saw The Mighty and CNN articles, she saw the potential damage it could cause as yet another stereotype and agenda that the mainstream media has on people with incurable neuromuscular diseases since she knew many people with severe incurable neuromuscular diseases that some doctors like to call terminal. She knew she wanted to do everything in her power to make sure adults with a NMD (neuromuscular disability) could share their story with all children with NMDs and their parents.

“In an online NMD community I did a poll 73% of adults (age 18+) with NMD said their families were told by doctors that they would die before reaching adulthood. Many people I know in the online NMD community were given an “expiration date” by their doctors at a young age and hundreds are thriving into their adulthood. Once this news story was publicized she knew adults in the NMD community’s stories needed to be told in order to educate and provide hope.”

She is a native Texan currently residing near Washington D.C. as a disability rights advocate and a fellow at RespectAbility. In Texas she was a special education teacher and department head with a Masters in Special Education and Educational Diagnostician Certification. She is also a board member and the Program Director of Camp Craig Allen which is non-profit dedicated to service children, adults, and veterans with physical disabilities, many of whom have NMDs. Laura also held the title of Ms. Wheelchair Texas 2014 where she educated and advocated to the media, business and political leaders, and the general public on disability rights issues.

At age 15 she was diagnosed with an unknown form of muscular dystrophy and is currently awaiting genetic test results from the NIH for her diagnoses. Laura was recently told by a pulmonologist that she is “one more respiratory illness from death”. She uses a power wheelchair, a bipap when sleeping. and a “sip and puff” ventilator during the day.

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Dear Julianna: Interview with Emily Wolinsky and Laura Halvorson, Part One

This is the first of two parts of an interview with Emily Wolinsky and Laura Halvorson about Dear Julianna: Letters to Children from Adults with Neuromuscular Disabilities (NMD). Read part two of the interview where they talk about their experience being interviewed by People magazine and the depiction of people with disabilities in the media.

Tell me about the origins of Dear Julianna and its purpose.

Emily: On the morning of October 27th, I checked-in with Facebook and the online support group I belong to, Living with M.D.. A group member posted a link to a CNN two-part online feature story with the headline, “Parents allow dying child to choose end of life care”. The little girl in the picture above the headline had the very same Bi-Pap ventilation mask as I did.

My gut reaction to the story was a reminder of other stories in the media in the recent past, which had haunted me, where the underlying message seemed to convey that living a life with a disability, particularly my disability, was not one a parent deemed worth preserving (Tania Clarence). I posted the CNN story on my Facebook wall and wrote:

This is going to take a while for me to process and write about because it will come from a very personal place. Living with a neuromuscular disability (NMD) is not an automatic or unpreventable death sentence. It is cause to adapt and cope through change. The five-year-old child discussed in this article, who has Charcot-Marie Tooth disease (a progressive neuromuscular disease), was offered the choice by her parents to not go to the hospital next time she gets a respiratory infection. Instead, her five-year-old brain has chosen to go to heaven. If a parent were to give their five-year-old without a NMD this choice – to refuse treatment or go to heaven – that parent would be charged with neglect and potentially murder. But thanks to a history of a media pro-porting the medical model of disability – a model that basically says we have no value unless we are “cured” – this type of shit continues and kids die without knowing that they CAN live. I’m absolutely sick right now from this story.

Later, in the comments of the thread, my idea for Dear Julianna first formed. I wrote:

I think we should all send this little girl letters explaining what happened to us when we didn’t choose heaven. We should tell her in four-year-old speak how great life is here on earth. Care to create a children’s book with me????? All I’ll need is a high quality photo of you (please make sure it’s a high quality image or it won’t print) and a paragraph. Email me at emily.wolinsky@nmdunited.org —-Sarah Glerup [tagged]: Care to design the cover of this book?

The next day, Sarah sent me her letter in a private message. I then pulled together a small group of other adults with NMD from my support group and we decided to publish a blog where people could email their stories of hope and survival for families to read. The published purpose of Dear Julianna is:

“The purpose of Dear Julianna is to educate kids and families all around the world about life with a neuromuscular disability (NMD), and to showcase thousands of individuals with NMD living happy and wonderful lives. With the help of medical technologies and assistive devices, and the support and love of our friends and families, people with NMD have the chance to grow into old age. Dear Julianna is a celebration of life! The adults who publish these letters hope that our audience will read them loud and proud to kids diagnosed with NMD to encourage them to keep on keepin’ on.”

While some may debate that our published purpose exists for another agenda, no evidence from the 100+ letters would highlight that “secret” agenda. Yes, our writers may try to relate to Julianna by discussing similarities. Yes, our writers may try to give wisdom to Julianna. But just as Julianna’s parents are guided by her, our letter writers are guided by Julianna into telling their stories of hope and inspiration.

Laura: Dear Julianna originally started in response to seeing an article on CNN regarding a 4 year old girl deciding to choose end of life care instead of going to the hospital the next time she gets sick. I heard about the story from a post Emily Wolinsky made and then I read the article and read more about J’s story by reading all the mom’s very detailed blogs. A few like-minded individuals and I decided to provide an outlet for others with NMDs who are living happy, healthy, lives with the assistance of advancing medical technologies. The project quickly evolved into the mission of writing letters to all children with NMDs and their families due to the large amount of misinformation, outdated research, and stigmas involved in living with a disability such as a severe neuromuscular disease.

Describe your role and involvement in Dear Julianna.

Laura: I am one of the cofounding members and U.S. Communications Director for Dear Julianna

Emily: I direct the Dear Julianna team and am president of the non-profit, peer-led, organization which sponsors the project, NMD United, Inc.. I work side by side with this group to edit and publish letters, lead volunteers, and speak for the project on a daily basis. I also collaborate and communicate with the board of NMD United, Inc. on activities related to this project.

Why is this project so important and personal to you?

Emily: When I was a little older than Julianna Snow is today, I served as a poster child for the Muscular Dystrophy Association (MDA) and appeared for a few years on the Labor Day telethon. Here’s a guest blog that describes a bit of that experience: http://www.thestrengthcoach.com/from-poster-child-to-president/

I didn’t know about the medical versus social models of disability at that age. All I knew was that there were a whole bunch of kids who looked exactly like me, and all of us were told by Jerry Lewis year after year that we were suffering, and that we would die an early death. I didn’t understand that the MDA telethon was a dramatized, 24-hour, sales pitch that would amount to billions of dollars in donations for a cure that I would most likely not see in my lifetime. I didn’t understand the full scope of damage this highly dramatized exaggeration of our lives brought to families facing a neuromuscular diagnosis. And finally, I didn’t ever get to find out what happened to my peers who appeared on the Jerry Lewis telethon. I assumed they died young, just as I assumed I’d one day die young.

But we didn’t all die. Not just hundreds, but thousands of Jerry’s Kids survived well beyond their expiration date. And funny enough, these “sad and suffering” kids – my peers – ended up on Facebook. Until joining a private Facebook group called Living with M.D. in 2012, I had no idea that people with NMD could live so far beyond their expiration dates. Suddenly, I met folks with this deadly diagnosis alive at seventy! Before LWMD, I had no idea that it was even possible for me to have a baby, live a productive life on full-time ventilation, and continue working, while barely being able to move, until retirement.

This is why this project is so personal to me because Julianna’s story is essentially a telethon pitch revisited and on steroids. It is needlessly scaring families with children who are facing a future of lifelong NMD. Julianna and other children with NMD deserve to know what I know because this knowledge does not only give hope for the future, but it gives understanding, resources, and a connection.

We are putting our stories out there to connect with others who share our same stories, but instead of terrifying families with tragic endings, we are giving reason to celebrate the quality of our lives as people with disabilities – not suffering and living meaningful lives. Dear Julianna is a different, happy, ending to a story that has been spun by our media as impossible to write.

Laura: As someone who was recently told by one of her doctors that I am  “one respiratory illness away from death” and as someone who also used to think it would be better to go to heaven than to live life with the complications of a severe neuromuscular disease, Julianna’s story resonated with me. I remember when I thought these things and had lost all hope because I didn’t have the most up to date information on living with an NMD. My outlook changed once I met other people with NMDs and learned about how they live and how they were living life to the fullest despite what the media and pessimistic doctors told me. I believe strongly in educating about NMDs to children and their parents with NMDs as well as the general public and this project has allowed just that and has already made an impact on others.

There have been criticisms by people with NMD (neuromuscular disease) and non-disabled people that the letters from Dear Julianna were critical of a family’s right to make their own medical decisions and that the project itself shouldn’t use the young girl’s name. Your response?

Laura: The parents chose to share their story about their daughter as well as detailed information on her condition through personal blogging, social media, and mainstream media news coverage in 2 countries sharing their choice to choose heaven over hospital and to not pursue potentially life-saving treatments. Our mission was inspired by these stories to educate and empower children and their parents with NMDs. Although our mission has expanded to writing letters to all kids with NMDs by adults with NMDs naming the project, “Dear Kid with a NMD” wouldn’t get the attention on the internet in order to get our important mission out.  Our published letters have guidelines one being writers cannot use Julianna’s full name nor is her full name anywhere on our social media. The other being the letters cannot be preachy or pass judgement. Our letters are to provide information and hope for our letter readers and are not here to hurt or offend.

Emily: The Dear Julianna letter writing campaign centers mostly on different choices.

The Dear Julianna team chose to honor and mentor a young girl with a neuromuscular disability, who represents so many children with neuromuscular disabilities facing challenges that are similar, if not identical, to the adults who are writing letters. Our team debated about the name of our campaign because we knew it would connect to the Snow family for as long as the Snow family chose to tell their story. This was not an easy choice to make, but we accept it, and we have no intentions to change the name. Eventually, when all this press dies down, Julianna will be one of many thousands of kids this project will serve.

And yes, while our choice to name our project Dear Julianna was initially inspired by the Snows’ story, our choice to continue to publish letters exists because of the feedback received from our audience; feedback explaining that Dear Julianna meets a greater good for people with neuromuscular disabilities and the disability community as a whole. Again we chose to push forward not for the Snows, but for children like Julianna who need an empathetic voice in their corner from individuals who truly get what it’s like to face life with a severe neuromuscular diagnosis.

Finally, the Dear Julianna team also chose to set guidelines for publications. Our guidelines were to 1) Never refer directly to the Snows or use Julianna’s last name. 2) Our letters would not pass judgment on the Snow family or preach to them beliefs of right or wrong. Because of these guidelines, we’ve edited many letters. We’ve also had to reject letters. Ultimately, our team set careful guidelines from the very start of the project to not only protect ourselves from controversy, but to protect the Snows from unintended grief or pain.

Michelle Moon, Julianna’s mother, has chosen to refer to her daughter as having a terminal illness. She has chosen to believe that her daughter has no other fate, but imminent death. A neuromuscular condition is not an illness, and in the many, many examples that Dear Julianna writers have provided, it is not imminently terminal. Choosing to see your child as having a lifelong disability (lifelong can be fluid in that no one knows how long they will live), or choosing to see your child as terminally ill, essentially grants or removes one important emotion – hope.

With choices there are consequences.

Michelle states that it is Dear Julianna’s assumption that she is withholding medical treatment from her daughter. That isn’t an assumption. When a parent makes a choice to not take his or her child to the hospital the next time they get a treatable illness, that is withholding medical treatment. Even if Julianna is now guiding that choice, it is still withholding medical treatment. When you choose to tell your story, some people may call you out on your intentions. That is a consequence of choosing to tell your story.

Dear Julianna’s letters are another consequence for Michelle Moon. She has said that Dear Julianna causes her great pain. I am no psychologist, although I do have a master’s degree in counseling, but I believe the reason Dear Julianna is so painful for her isn’t because it’s judging the Snows (it isn’t); it’s painful because our letters provide the thing Michelle’s denied the most – hope.

What do most people (even in the disability community) do not understand about life with a NMD?

Emily: My friend Beth, an able-bodied woman, told me that she sat down at her computer to read the letters for the first time with a box of tissues at her side. She expected to be moved by the letters and to have a quick cry after a few minutes. What she didn’t expect was that she would become “addictively engrossed” with the stories. Two hours after sitting in front of the computer, she was only half-way through the letters and not a tear was shed. She said she didn’t feel sorry for us at all. She said what surprised her the most was just how ordinary our lives were and how interesting ordinary was.

Life with a NMD is pretty damn ordinary most of the time.

Laura: Before starting the DJ project with like-minded individuals, I personally did not know that people with NMDs can live such full productive lives despite complications due to illness. Many of them even have trachs.

About 

Emily Wolinsky came up with the concept of writing letters in kid-speak to Julianna. She co-founded Dear Julianna with friends involved with the non-profit association she is President of, NMD United. NMD United is sponsoring the project, and the organization’s mission is to foster meaningful interactions between adults with neuromuscular disabilities, and provide them with informational resources to increase self-direction while promoting independence.

A young white woman against a black background, she has long brown reddish hair. She is smiling at the camera and wearing a gray top with a white lace design on the front

Emily Wolinsky

“This is the perfect collaboration and I’m so honored to be involved with both Dear Julianna and NMD United. The people on our team are incredibly talented and compassionate. The individuals who send letters provide me with such hope and joy for families with young children, who are going to learn so much about living from us. I wish I had more hours in the day to work on this effort and potentially save many children’s lives,” said Emily.

Wolinsky owns her own home in Austin, Texas, lives with her boyfriend, roommate, and two dogs. Emily’s professional background is in non-profit development, outreach, and education. Her full-time day job is as a Student Accessibility Services Specialist at Austin Community College. Oh, and Emily Wolinsky has a diagnosis of Spinal Muscular Atrophy, type 2/3. She uses a power wheelchair, is non-weight bearing, requires 46 hours of attendant care per week, and requires nighttime ventilation.

Headshot of a young white woman with blue eyes with chin-length golden brown hair. She is in a wheelchair and a headrest is behind her.

Laura Halvorson

Laura Halvorson is the U.S. Communications Director of Dear Julianna and one of the co-founding members of Dear Julianna. When she and some of her peers with neuromuscular disease saw The Mighty and CNN articles, she saw the potential damage it could cause as yet another stereotype and agenda that the mainstream media has on people with incurable neuromuscular diseases since she knew many people with severe incurable neuromuscular diseases that some doctors like to call terminal. She knew she wanted to do everything in her power to make sure adults with a NMD (neuromuscular disability) could share their story with all children with NMDs and their parents.

“In an online NMD community I did a poll 73% of adults (age 18+) with NMD said their families were told by doctors that they would die before reaching adulthood. Many people I know in the online NMD community were given an “expiration date” by their doctors at a young age and hundreds are thriving into their adulthood. Once this news story was publicized she knew adults in the NMD community’s stories needed to be told in order to educate and provide hope.”

She is a native Texan currently residing near Washington D.C. as a disability rights advocate and a fellow at RespectAbility. In Texas she was a special education teacher and department head with a Masters in Special Education and Educational Diagnostician Certification. She is also a board member and the Program Director of Camp Craig Allen which is non-profit dedicated to service children, adults, and veterans with physical disabilities, many of whom have NMDs. Laura also held the title of Ms. Wheelchair Texas 2014 where she educated and advocated to the media, business and political leaders, and the general public on disability rights issues.

At age 15 she was diagnosed with an unknown form of muscular dystrophy and is currently awaiting genetic test results from the NIH for her diagnoses. Laura was recently told by a pulmonologist that she is “one more respiratory illness from death”. She uses a power wheelchair, a bipap when sleeping. and a “sip and puff” ventilator during the day.

 

 

Bright yellow image with black text centered that reads: "#CripTheVote Twitter Chat: Our Voices, Our Vote Americans with Disabilities and Political Participation. Twitter chats: #DemDebate         February 11, 2016, Time: TBD. #GOPDebate February 13, 2016, Time: TBD. Follow @AndrewPulrang @DisVisibility @GreggBeratan on Twitter"

#CripTheVote: Our Voices, Our Vote

The Disability Visibility Project and Disability Thinking will host a series of Twitter chats this year following the 2016 Presidential Election and other local elections.

#CripTheVote: Our Voices, Our Vote

Americans with Disabilities and Political Participation

Hosted by Andrew Pulrang, Gregg Beratan, and Alice Wong, the first two chats will preview two debates in February:

Democratic Debate         February 11, 2016, PBS, Time: TBD 

Republican Debate         February 13, 2016, CBS, Time: TBD 

#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!

How to Participate

When the debate begins, check out the live-stream: http://twubs.com/CripTheVote

Follow @AndrewPulrang @DisVisibility @GreggBeratan on Twitter for updates

Use the hashtags #CripTheVote and #DemDebate or #GOPdebate when you tweet

Additional information on voting and people with disabilities

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

A note on language and usage of the word ‘crip’:

https://www.wright.edu/event/sex-disability-conference/crip-theory

Questions? Media inquiries?

Email Alice: DisabilityVisibilityProject@gmail.com

two women in wheelchairs sitting side-by-side against a plain white background. The white woman on the left has curly red hair and is wearing glasses, a gray sweater an a green scarf wrapped around her neck. The Asian American woman on the right has her head tilted toward her friend, she has black hair and is wearing glasses and a green jacket.

DVP Interview: Rachel Stewart and Alice Wong

On November 21, 2015 Alice Wong interviewed her friend Rachel Stewart at StoryCorps San Francisco for the Disability Visibility Project. Below are some condensed and edited excerpts from their conversation.

On developing disability pride

Alice: Speaking about a healthy sense of disability pride. When do you think you reach that point in your life where open and proud of who you are?

Rachel: I think, well I think it was an ongoing process and it always is. You always have these new levels or senses of pride and who you are. I think that it first started for me when like, or at least developing a disability identity was being around other people with disabilities at MDA camp. That was really you know, I was young.

I was probably seven or eight and that continued on. I don’t think I really recognized it that like, “Oh, I feel extra comfortable around these people I just knew.” I love camp, but I think the pride came once I started school at UC Berkeley. I was in a disabled students residence program. I was learning my own independent living skills and learning how to manage my own care and all of that.

On attending the University of California, Berkeley in the late 1990s and living in the school’s Disabled Students’ Readiness Program

Rachel: It was a program that was originally started by Ed Roberts who’s the father or the disability rights and independent living movement to assist individuals with physical disabilities and making that transition into college and having to manage their own personal care attendance. For the first year in the program they provided 24 hour a day personal care attendance and helps you know, had another component where they also taught you how to hire and manage your own. That was like, I don’t think I would’ve moved out in my parent’s house at 17 unless I have that program. That was pretty groundbreaking for sure.

Alice: How did that help you in terms of becoming your own person and when did you learn from that?

Rachel: I think it learning that I could manage my own care, that I can be independent even though I needed help going to the bathroom and getting dressed and all those things. That doesn’t mean that I’m not an independent person. It gave me a lot more of a sense of control over my own life, instead of constantly having my parents help me. Not having any sense of I guess, well just control and being able to go to bed when I wanted or get up when I wanted and all those different things. I think that was a big part of learning in becoming an adult for me and coming out of my own skin was like just gaining that sense of independence.

The disability pride was coming out of being around other people with disabilities that basically when I lived my whole first year in the program. Even actually all the other years that I was going to school at UC Berkeley, the majority of my closest friends were people with disabilities. Having that shared experience and just understanding of we’re okay. We’re doing, we’re good, there’s not anything inherently wrong with us. That it’s instead the way that other people are seeing us and treating us.

On how Rachel’s wife became more familiar with the disability community and its culture when they first met

Rachel: …[she] had no previous history with disability. It was funny [when they first started dating] she told me it was just like, “Oh my God, I was Googling what it’s like to go on a date with somebody that uses a wheelchair.” Because she’s like, “I have no idea.” When I showed up when we first met, I showed up to the sushi restaurant where we are meeting. She had the chair pulled away. They had already pulled it away from me and I’m like, “Whoa, okay cool.” She was always thoughtful about stuff like that. We kind of figured it out… I remember she was texting me and she happened to be at a grocery store. She took a picture of the checkout thing and it said, “Donate to a muscular dystrophy association.” She was like, “You’d be so proud of me. I gave them $5.” I was like, “Oh, boy”…Then I had to take that whole thing as like a teaching experience of why the MDA, just perpetuates negative stereotypes of people with disabilities. All the stuff in how I don’t support them. The only thing that I really have gotten out of working with MDA has been summer camp as a kid. Which is amazing, and then wheelchair repairs. Everything else I’m like, “Oh, I can’t stand behind that.” She really was patient and took the time to learn from me and acknowledge that this was something new for her.

Alice: Is she pretty comfortable now? In terms of…all your friends and this huge network of people with disabilities as part of the Bay Area. Sometimes that can be somewhat daunting for non-disabled people who aren’t politicized at all to get around a bunch of uppity crips.

Rachel: Definitely. Sometimes she makes fun of me for being an uppity crip. She did like, I think it was an adjustment for her. I had to tell her how to help guide somebody that was blind. I’m like, “Let them grab your arm.” All those things, but she really wants to learn and is still learning. I think we all are.

It’s been good and I think she embraces it and she takes what she’s learned and passes it on to her friends that are non-disabled that may not have those ideas. Or even her friends that have children with disabilities and stiff like that. She’s already talking about passing on information about power soccer to one of her friends…

On being married earlier this year

Rachel: I don’t know if I ever saw myself as a married person. Growing up with a very obviously physical disability, using a wheelchair for a long time. I don’t think I ever saw that as a possibility for myself. It’s like later on in life I’m like, “Okay, yeah maybe I can date.” Then it’s like, Oh, maybe I can be in a long term relationship.” Then, “Oh, maybe I can be married.” I mean I think it was like an evolution. I’m really happy and I finally found the right person that accepts me 100%. I’m just really thankful for that. It’s wonderful being married, long story short.


Rachel Stewart is a program coordinator for the College to Career (C2C) Program at the College of Alameda, a Department of Rehabilitation-funded program supporting students with intellectual disabilities in taking college courses and transitioning into employment.  Over the last 10 years, she has worked for several organizations aimed at increasing employment of youth and adults with disabilities, including staff manager of the California Committee on Employment of People with Disabilities, project director of the California Youth Leadership Forum, program manager of the California Health Incentives Improvement Project, and policy analyst at the Office of Disability Employment Policy at the US Department of Labor. Rachel is also a board member of Community Resources for Independent Living, an independent living center in Hayward.   A wheelchair-user since the age of 5, Rachel holds a strong commitment to the independent living movement and a passion for supporting individuals with disabilities in reaching their fullest potential. Rachel received a M.A. in Rehabilitation Counseling from San Diego State University in 2011 and a B.A. in Psychology from UC Berkeley in 2005.

Alice Wong

For more: http://disabilityvisibilityproject.com/about/

Twitter: @SFdirewolf

Yellow background with black text that reads: Disability Visibility Project Twitter Chat, Disability in the Future & Science Fiction/Fantasy Saturday, January 16, 2016 6 pm Pacific/ 9 pm Eastern #TheFutureIsDisabled #FilmDis

1/16: #TheFutureIsDisabled Twitter Chat

The Disability Visibility Project will be guest hosting the #FilmDis Twitter chat for Dominick Evans this January!

Disability in the Future

&

Science Fiction/Fantasy

Saturday, January 16, 2016

6 pm Pacific/ 9 pm Eastern

Overview

#TheFutureIsDisabled is a hashtag created by the Disability Visibility Project. It’s an idea the DVP will explore with the disability community.

You might wonder, “What the hell is The Future Is Disabled?” Does it sound ominous? Hopeful? Inevitable? What does it mean? How does science fiction and fantasy expand and inform the disability experience and provide glimpses of the future?

Check out the bottom of this page for the story behind #TheFutureIsDisabled: http://disabilityvisibilityproject.com/sweet-swag-shop/

How to Participate

To follow the conversation on Twitter, check out the live-stream: http://twubs.com/TheFutureIsDisabled

Use the hashtags #TheFutureIsDisabled and #FilmDis when you tweet

Follow

@DisVisibility and @dominickevans

 

 

 

 

2 individuals in wheelchairs in front of a StoryCorps listening booth. The person on the left is a middle-aged African American man in a black jacket w/ short braids. The person on the right is a middle-aged Asian American woman wearing a green jacket and glasses. Both are smiling at the camera.

DVP Interview: Kenzi Robi and Alice Wong

On November 5, 2015, Alice Wong interviewed her friend Kenzi Robi at StoryCorps San Francisco for the Disability Visibility Project. Below are some condensed and edited excerpts from their conversation.

On using personal assistance for activities of daily living and what it takes to “get out the door”

Kenzi: First of all I’m paraplegic. I was shot in my neck 23 years ago. I have minimal use of my arms. I can’t grab anything. I have no use of my legs. I’m very dependent on care providers. When someone comes in in the morning, the first thing they need to do, wash their hands, get gloves and then check and be sure I’m clean. First of all because anything can happen. Thank God most of the time I am because my condition, I’m usually constipated. I don’t know if this is too graphic.

Alice: No, not. Let’s talk about poop. Poop is important. Right?

Kenzi: All right. It is important. For me a lot of times I’m constipated, so it’s like did I go? Okay, thank God I didn’t go on myself. Then now they got to get me up only to mole chair and go through this bowel regimen that I have to do every other day. A lot of times it’s literally hit or miss. If I go and come out, good. If I don’t not so bad. At least I win. But the person has to clean that up. That’s a lot to ask a person to do for $12.50.

Alice: An hour.

Kenzi: Yeah, an hour.

Alice: What else is involved let’s say your morning routine? What does it take for you to get out the door?

Kenzi: Oh yeah. That takes … If I don’t have to do my bowel regimen then I can get out the door in an hour and half maybe. Because I got to get cleaned up and it takes a while for me to get dressed and everything. Then I got to just be sure I got all my mags and I can’t just get up and just go like the average able bodied person. I have to do the catheterization. I have to do that four times a day. That takes 30 minutes, one hour.

Alice: What’s involved in that? A lot of people who do not understand what [catheterization is].

Kenzi: Basically what it is that I have to have someone … He uses close to sterile technique as possible inserting 18 inch catheter inside my penis into my bladder to empty my bladder. I have to do that four times a day at least. That’s assuming that I don’t drink too much and I have to go again, I have to go early which I try to avoid.

Alice: Talk about intimate work.

Kenzi: Talk about intimate work and if someone hasn’t done that before then I have to be very careful explaining that to the first medical procedure and the importance of maintaining the sterile field or the clean field which is what I use, a combination of both.

Alice: [with that kind of] intimacy, a lot of trust is involved.

Kenzi: Most definitely…I have to watch people. I have to watch people because there has been times when I’ve had had a nurse in the hospitals, I saw her contaminate the catheter and I said, “You can’t insert in me because the catheter is contaminated. She argued me down. She said how she was working for 25 years and she hadn’t made a mistake once. I thought, “You haven’t made a mistake in 25 years? You about to do right now.” I have to watch people and if someone who’s been working in a field of nursing for 25 years and think that they can’t make a mistake and surely really someone who’s been doing something for five days or five months or six months is going to be more prone to make a mistake.

Basically I have to always watch people. That issue of trust kind of like gets in the way sometimes because they mistake me watching them for distrust. It’s not that I don’t trust them, it’s just that I want to be sure that they don’t make a mistake. Those are the people I need. I need the people who know and realize they are going to make a mistake. They are human. I don’t want people working for me who act like they aren’t following up.

Alice: Yeah. That’s pretty scary when they think …

Kenzi: It’s very dangerous.

Alice: “Don’t worry about it. I know what I’m doing.”

Kenzi: Right. Waving the catheter around and stuff and scratching their hair, “I’m good.”

Alice: When somebody … Before they pick me up and they say, “Don’t worry. I know what I’m doing.” I get so scared…That’s where I feel the vulnerability. We are explicitly putting our lives in their hands.

On adjusting to living as a disabled person after his injury

Alice: What was the whole transition like for you from a non-disabled person to person who became disabled…what was that journey like in terms of adjusting to your new identity?

Kenzi: It was difficult. I had to deal with suicide attempts. Thank God I wasn’t successful, but I realized that everything happens for a reason and the things are not so bad. Once you calm down and pay attention … Patience was one of the second things that I learned after getting disabled. I think that one of the most important things is patience. I’m able to look around and appreciate life way more than I ever could have before.

Alice: If I may ask about your suicide, what made you think about that life is not worth living?

Kenzi: Well, I was very athletic. I actually played football and everything. I went from going a hundred miles per hour to two miles per hour. I mentally was not able to accept the loss. My son was actually born three months prior to me being disabled and he was born premature. I could have wanted to be there for him, but I could not be there for him because it was a new experience to me. I didn’t even know how to take care of myself let alone a newborn baby boy. It was a lot of, a great deal of stress for me. This was the year where previously my brother had got shot and a friend of mine had got shot that same year. There was a lot of pain there.

Alice: How did you get through it?

Kenzi: I’m going to be honest and say God. My religion is what got me through it. I was able to understand the road that I was going when I got shot because I was drinking, I was hanging out on the streets and I wasn’t doing what I was supposed to do. I realized that I started off on a good path and I ended up going on a wrong path. Once I realized that I realized that God is good. This world has evil people in it. That means there are god people. If there is dark, then there is light. I realized that I need to have a better relationship with God and to understand what it is that he wants for me to do. I’m still not 100% clear on that, but all I know is that I stick with him and no matter what I try to do the right thing.

Alice: I imagine for a lot of people become disabled that one of the things that… Must be frustrating, depressing, is a loss of control. In a lot of ways I think one thing that I learned is that a person with a disability is like, there is no such thing as control.

Kenzi: Especially when you see able-bodied people. Able-bodied people are supposed to be perfect by they still fall flat on their face. It kind of puts you on a perspective that life really … You really don’t have control over much in your life.

Alice: Yeah, and I think what we do have control of we take care of what we can and then a lot of that is just not in our hands.

Kenzi Robi

Kenzi Robi is the President of the San Francisco IHSS (In Home Supportive Services) Public Authority Governing Body. From the About section of the Public Authority’s website:

Kenzi Robi was paralyzed from the neck down when he was 19 years old and spent a year at Laguna Honda Hospital. An artist all his life, he taught himself how to paint again by using his teeth. As part of this process, he studied Graphic Arts at City College. He has a son, Kenzi Jr., now a young adult. Kenzi has spoken on behalf of IHSS and people with disabilities at Capitol Action Day in Sacramento. He now works with other people with disabilities as a Peer Mentor. He notes that he’s very happy to be able “to help others appreciate and improve their lives, those people who were and are in my shoes.” In late 2010, a film about Kenzi won first prize in the National Disability Institute’s “Economic Empowerment—Defining the New American Dream” video contest. He currently serves as the PA Governing Body president.

For more, check out Kenzi Robi Art on Facebook: https://www.facebook.com/Kenzi-Robi-Art-153225914789179/

Alice Wong

For more: http://disabilityvisibilityproject.com/about/

Twitter: @SFdirewolf

 

 

Bright yellow background with black text centered in the image that reads: disability visibility project, “Recording disability history, one story at a time” DisabilityVisibilityProject.com, Twitter bird icon, @DisVisibility, #TheFutureIsDisabled

DVP 2016: Donate, Swag Shop, and More!

January 1, 2016

Whew—it’s already 2016! This summer will mark the 2-year anniversary of the Disability Visibility Project (DVP) and I’m delighted to share some major updates and news.

  1. Extension of the community partnership with StoryCorps: people will have the option of recording their story at StoryCorps for the DVP until further notice
  2. New description, images, and hashtag for the DVP
  3. New online Swag Shop and Donate page
  4. New non-audio ways to participate in the DVP
  5. Brief hiatus January-March 2015

Currently we have +100 oral histories that are part of the DVP collection and I will have access to the entire archive in the near future. The DVP will be focused on the gradual posting of short audio clips with text transcript for each oral history on our website in 2016-17 depending on funding.

Picture of a small wooden table with two black chairs, one on the left and one on the right. At the center of the table is a small lamp and two swinging arms holding microphones for recording.

StoryCorps Extension

Previously I announced that our partnership with StoryCorps would end December 2015 mostly because I was concerned about being overwhelmed with the number of stories recorded for our project. Initially, I envisioned the DVP to last one year but the response from the disability community has been resounding. There is a real hunger for a project that allows people to tell their stories on their own terms. Leaving the option open is the right thing to do—the partnership with StoryCorps provides such a valuable opportunity to have these oral histories archived for posterity.

DVP Description, Images, Hashtag

The DVP has become more than an oral history project—it is its own distinct community facilitated social media, a key to our success and outreach. In our About page, the DVP is now described as, “an online community dedicated to recording, amplifying, and sharing disability stories and culture.” From our Twitter chats, oral histories, guest blog posts, and discussions on social media, storytelling happens everywhere.

To kick off the New Year, I created new images for the Disability Visibility Project with our new hashtag #TheFutureIsDisabled. The new images are on at the top of this post, below this section, and on the right-side panel of the DVP website—feel free to use and share.

Bright white background with black text centered in the image that reads: disability visibility project, “Recording disability history, one story at a time” DisabilityVisibilityProject.com, Twitter bird icon, @DisVisibility. Two black borders surround the image.

Swag Shop

You might wonder, “What the hell is The Future Is Disabled?” Does it sound ominous? Hopeful? Inevitable? What does it mean? What does your future look like?

The DVP will explore this idea throughout 2016. As part of the DVP’s fund-raising efforts, we’re using this slogan to sell some sweet, sweet swag for you to show off your disability pride and culture. We have baby onesies! We have buttons! We have t-shirts and mugs! Check our Zazzle online store for the entire collection and our website for the story behind “The Future Is Disabled.”

Screenshot of the Disability Visibility Project's Zazzle.com online store featuring images of buttons and mugs for sale.

Donate

I feel uncomfortable asking for donations, but it’s time to humbly ask for your financial support. For the first year and a half, I have been the sole person running and financing the Disability Visibility Project. It truly is a labor of love and one that I would like to continue, develop, and broaden. Check out our Donate page for specific examples of how donations will support our activities and advocacy. No obligation, of course.

How to Participate: Guest Blog Posts and Online Gallery

In addition to recording your story in person at StoryCorps or using the StoryCorps app, there are two additional options to provide accessible and diverse options to people with disabilities: guest blog posts and 365 Days with Disability, an exciting new Instagram-based project thanks to our new partnership with Two Thirds of the Planet.

Personal Note

I will be working on a radio project as part of my Community Storytelling Fellowship with Making Contact Radio from January-March 2016. This may result in fewer posts on the DVP website and social media. I’m excited and nervous to try something new and will hopefully bring some new skills to the DVP later this year.

If you have any questions, feel free to email me:

DisabilityVisibilityProject@gmail.com

THANK YOU and HAPPY NEW YEAR!

Asian American woman in a wheelchair in front of a StoryCorps recording booth. A blue caption bubble says, "Thank you!"

Alice Wong, Founder and Project Founder


Disability Visibility Project: 2015 Highlights

two women of color in wheelchairs in front of a recording booth. The woman on the left is wearing a green jacket, glasses, and has black hair. The woman on the right has long curly dark hair, a black and magenta top and a tray attached to her wheelchair. Both are smiling.

DVP Interview: Patty Berne and Alice Wong

On November 19, 2015 Alice Wong interviewed her friend Patty Berne at StoryCorps San Francisco for the Disability Visibility Project. Below are some condensed and edited excerpts from their conversation.

On disability justice

Patty: I think people are often more familiar with both understanding of a rights based framework than a justice based framework in general, regardless if it’s racial justice or reproductive justice. Those are, I think, a little bit less clear for people oftentimes than the idea of a rights based framework. Just to kind of distinguish that a little bit, when we’re talking about individual rights, they are exactly that, they are individual rights and they are … So, the framework that individual rights are based in is legal framework. Something that one could litigate, and based on individuals experience of marginalization, discrimination, et cetera. Again, there’s an assumption that rights are enforceable by the state and defendable by the state.

I think that’s quite different than a justice based framework in that justice frameworks are about collective bodies. It’s a framework that one would call pocket art movement organizing and building power as a collective, as a sector so to speak when doing popular movement organizing and justice. The thing that I hold very central is that rights can be “granted” and taken away, and that justice exists outside of any legalistic framework, but actually is based in our dignity and our integrity and wholeness as communities, and they’re kind of both concepts and meanings, and I think practices that are about how we can live together, multiple communities, multiple nations fairly with each other, and it’s really kind of square zero as opposed to square 1 or 2. Justice is about how we live and love and practice that every day interactions. It’s not something that can be taken away.

Alice: Yeah, and it’s not something that you possess. Right?

Patty: Right.

Alice: It’s inherent in who we are as people.

Patty: Right, one would hope.

Alice: One would hope. That’s the goal, right?

Patty: Yeah, and as collective, as groups of people, not just as individuals. Given that disability rights are something that I feel quite literally I wouldn’t be sitting here today if it weren’t for the Disability Rights Movement. I think there were huge advances made by the Disability Rights Movement in terms of codifying legal rights for people with disabilities, particularly centralizing people with mobility impairments.

At the same time I like to think of them as cliff hangers. Not like, “Oh, these are things that the disability rights organizers abandoned or forgot about,” but every movement has cliff hangers. It can take you so far, and then as awareness moves forward both because of new understandings and new participants in movements, … it’s another generation, another iteration. Actually, it’s interesting, when Mia Mingus and I first talked about Disability Justice, we were really clear about not having it be a second wave of disability rights, although we did talk about disability rights as a first wave, and what were the pros and cons of calling it Disability Justice…

…I think Disability Justice as a framework understands disability within a social justice context understanding that we all live in multiple power relations. So, within white supremacy, within patriarchy, within capitalism, within heteronormativity, within enforced interbinaries. We’re also living with anabolism and all these different oppressions, structural oppressions interact with each other, and rather than centralizing one … because you know, what the disability rights movement did was really centralize disability almost to the invisibilization of other identities.

Alice: Almost to a detriment of the lives and the experiences of, for example, people of color who have disabilities.

Patty: Right. It makes sense because the people that were leading were white and middle class, and that was their primary focus perhaps of marginalization, but when you’re a disabled woman of color, there are many, many ways that we get undermined both individually and collectively, and many ways that we can draw on our strengths. I think Disability Justice firstly interacts with the whole concept, which is not new, of intersectionality. Disability does this also which is, I think, a very key part.

Disability Justice is really bringing our bodies into the conversation because I think disability rights was trying to assert a sense of normalcy around disability. In fact, of course, disability is a natural part of being in a body, just like being older is a natural part of being in a body, and being a toddler is a natural part. It’s not like we’re doing it wrong when we’re disabled or when we’re old, it’s just what it means to be in a body. We come in various forms and shapes and at the same time, because the disability rights movement is essentially an assimilationist movement, it didn’t want to bring the bodies complexities into the political [inaudible 00:13:11] so to speak. It kind of maintained the privacy around how we are distinct when we have nonconforming bodies, non-normative bodies.

Not only do I think that’s unnecessary, like I don’t need to be ashamed or averse to the change of my physical existence, but also it’s a huge strength for me as an individual and collectively, like we actually … I’ve learned a lot from living in a crip body, and I don’t need to leave those understandings aside. It’s actually a huge asset. It’s part of who I am, so it’s a huge asset to me and to the communities I’m involved in.

Working toward a future world that embraces disability justice

StoryCorps Facilitator: I’m giddy with excitement listening to this conversation…if we all lived in a sense of exactly what you’re talking about, Disability Justice, if we all wanted and were working towards thinking about communities and people beyond their ability to mimic an able-bodied white middle class norm, what would that look like if we were really able to move towards that and were really able to start embodying that?

Patty: Right. I think the individual decolonization process for a body, and decolonization not just from formal imperial colonization, settler colonization, but also decolonization from patriarchy and decolonization from specifically like expectations. I don’t normally have expectations.

What would that mean for the land too? We can create our own little liberated zones, but at Sins Invalid pretty soon we’re going to encounter resisting able-bodied normativity…we’re going to start having tops optional days so that we can just be like, “Yeah, this is what it would be like if actually all of our bodies were … if some bodies weren’t seen as desecrating the environment by being invisible, if all bodies were accepted and seen as beautiful. “

We can make little liberated zones for ourselves, but what would it also mean for the land? I think the process of decolonizing out bodies and decolonizing actual land are part and parcel of each other because to me we’re not outside of the earth. We are with it and I love … I call them my babies. I’m more like their baby. I love them. My plants and the trees in my yard. They’re literally, like we would die. They would go on, but we would die. What would it mean if actually the integrity of water was respected and not privatized. What would it mean if the integrity of trees were respected and privatized. A being that’s 500 years old, 2000 years old was revered the way it should be. Be it like a sea turtle or a tree.

Alice: A whale!

Patty: If we just could actually have respect for ourselves and the world.

Alice: Mm-hmm.

Patty: To me that’s where I want to live. That’s where I want to be.

Alice: That’s what, I think, ultimately people talk about, liberation. I think that’s what it kind of looks like.

Patty: Yeah.


Patty Berne is a Co-Founder and Director of Sins Invalid. Berne’s background includes advocacy for immigrants who seek asylum due to war and torture; community organizing within the Haitian diaspora; international support work for the Guatemalan democratic movement; work with incarcerated youth toward alternatives to the criminal legal system; advocating for LGBTQI community and disability rights perspectives within the field of reproductive and genetic technologies; offering mental health support to survivors of violence; and cultural activism to centralize marginalized voices, particularly those of people with disabilities. She is pursuing a Psy.D., focusing on trauma and healing for survivors of interpersonal and state-sponsored violence. In 2008, she had a chapter published in the Routledge Press book, Telling Stories to Change the World, on the work and history of Sins Invalid. She currently chairs the Board of Directors at San Francisco Women Against Rape and is the 2009 recipient of the Empress I Jose Sarria Award for Uncommon Leadership in the field of LGBTQI and disability rights by the National Gay and Lesbian Task Force.

Patty’s bio from Sins Invalid: http://sinsinvalid.org/artistic_core.html

Alice Wong

For more: http://disabilityvisibilityproject.com/about/

Twitter: @SFdirewolf

Two Asian American sitting side-by-side. The woman on the left is in a wheelchair; she is wearing a green rain jacket and glasses. The woman on the right has short black hair, glasses and is wearing a striped-t-shirt. They are both smiling at the camera.

DVP Interview: Alice Wong and Ellen Wu

On June 4, 2015 Ellen Wu interviewed her childhood friend Alice Wong at StoryCorps San Francisco for the Disability Visibility Project. Below are some condensed and edited excerpts from their conversation.

Origins of the Disability Visibility Project

Ellen:                  Okay. I’m going to go serious. We’re here today because of a project that you were instrumental in launching, which was the Disability Visibility Project. Tell me about the disability visibility project. How did you come up with the idea? What inspired you to get involved, and what are your hopes for it?

Alice:                  About three or four years ago I went to a StoryCorps event in San Francisco. It was a live event where they had actual participants who were featured in StoryCorps including their animated shorts and broadcasts on NPR’s Morning Edition. These are some of the people that I listened to and really enjoy having met them. They talked about their experiences and that was really exciting. As a listener and a fan, those stories really were like pictures in your mind. You really felt such connection to them. They’re short, but they have an impact.

During that event they talked about various community partners they have. I thought, “Oh, I’m in the Bay Area. I wonder if they’ve ever done one with a disability organization since there’s such a large and vibrant disability community.” I approached somebody and I think after a year or two, about a year of emailing back and forth, I proposed, “What do you think about a disability community specific partnership?” The people I spoke to were really receptive to it. It was a matter of getting the parameters down. This was in the early 2014, 2013/2014, and I thought, “What’s going to be the big theme behind this project?”

Already, people in the disability community were planning events and talking about the 25th anniversary of the Americans with Disabilities Act. Which was going to be this big time celebration this past July 26, 2015. Back in 2014 I thought, “This could be the launching pad or a theme to jump on this bandwagon.” I thought the timing was really lucky in the sense that I had enough time to think about it and to really push it out.

It launched July 2014. The purpose is to document and record the stories of people with disabilities doing whatever. It’s illuminating what people are doing, what they care about. It doesn’t even have to be about disability rights, or politics, or about the ADA. It’s really about how are people living now.

I also created a tagline for the project: “Creating disability history one story at a time.” I do believe that through story telling, we are going to create an archive that one day people can use for, hopefully, historical purposes, or just educational purposes.

Ellen:                  I total am with you there. I’m really psyched that you did this. As a historian I think this will be a very rich archive down the line.

Alice:                  I think people don’t realize, in the current day, that what we’re doing is historic. I think it is important to remember what we’re doing now so that it can be preserved for the future. As a historian, what are your thoughts about utility of our history? Is that something that is still a really important resource in terms of research?

Ellen:                  It definitely is for people … Well first thing, you probably have to do more recent history, but for folks that are more ordinary folks who are not necessarily in positions of power, sometimes oral history is the most effective way of capturing the, I guess Clifford Geertz would call that kind of thick description of that, right? That texture of people’s lives that you can’t just get from reading government documents.

For some people, maybe other traces they leave behind in a written sense, like maybe a birth certificate, maybe a death certificate, maybe a library card. That’s not enough to get a full look into somebody’s life. I love embracing the ordinary. I think that’s why I started off with the coffee question because we know a lot about you, but knowing how you take your coffee and your former addiction to sugar. Yes, I think it’s great.

Alice:                  I do think that there is a thing about the ordinariness of everyday people. There’s a lot of beauty and significance on how we live our lives. I think for people with disabilities, I think in whatever is published, it’s often the big names; Helen Keller, FDR. These are all good, but there’s such a wide variety of people. So many marginalized people that aren’t of interest to the people who write history books. That’s why I chose this type of crowd-sourcing, self-voluntary creation. That’s what’s so empowering and exciting about StoryCorps as an organization.

Childhood Memories Growing Up in Indianapolis

Ellen:                  It is good. One of the best things I remember … do you remember … well, I want to hear your take on this. The time we were probably in 12th or 11th grade when your parents really kindly … well, you orchestrated a field trip up to Chicago.

Alice:                  Yes. So fun!

Ellen:                  You tell the story.

Alice:                  I guess I really was into the arts, not as an actual participant. More as an admirer. I think the Art Institute in the early 90’s had a visiting Claude Monet exhibit. You could buy tickets ahead of time and I thought, “Road trip!!” We, as a family, and as a lot of Chinese families, would often just take a day trip to Chicago specifically for dim sum and grocery shopping.

Ellen:                  It’s like a three-hour ride to have lunch and buy groceries.

Alice:                  That’s what you do as Chinese Americans who have no decent groceries or dim sum in Indiana in the 1990’s!!

Ellen:                  Sheer desperation would drive you.

Alice:                  I’m sure now it’s better, but they didn’t suffer like we did. I think that that kind of distance made you appreciate it so much more; the effort it took to enjoy that food. I thought while we’re out there we can go to the museum and why not have our friend Simon and Ellen join us. It was a ragtag van full of us kids. We definitely ate something before or afterwards.

Ellen:                  I think we went to Giodarno’s stuffed crust pizza.

Alice:                  That was good. We went to the museum. It was fun. it was a road trip without us having to drive.

Ellen:                  You blew my tiny mind. That’s really the first time I can remember going to a serious art museum. There was a huge collection of Monet paintings.

Alice:                  They were really good.

Ellen:                  This was the thing. You always knew, for my birthdays you would give me literary books for gifts. One year it was Angels in America. Another year it was a book about coffee. You planted the coffee snob seed in my head. I don’t know how you knew about this stuff. Once you forced us to watch a David Lynch thing [Twin Peaks].

Alice:                  That’s the nerd in me.

On being disabled and growing older

Ellen:                  I appreciate that, because I think recently you had published an essay in Amerasia Journal, sort of reflecting on growing up with a disability as an Asian American as well. What really struck me, as long as we’ve known each other. I didn’t realize …

Alice:                  The anger?

Ellen:                  The anger and the depth. Again, I think it goes back to the original things that we were talking about. Just the ordinary things that we mostly take for granted as able bodied people. Just how you have to think out so many things so far in advance. They don’t always work out, but also the emotional consequences of that. The psychological, I don’t know what you would call it, effective or something. The consequences of those challenges.

It makes me think of another question I had for you. Going back to living with disabilities. You have muscular dystrophy, and you were born with it. Of course we know that it’s a debilitating disease. I know it’s a big part of your life. I wanted to ask you to reflect on how it’s shaped your views on living, on dying, and your own mortality in particular.

Alice:                  I’m so glad you asked me this, and I do want to thank you. You were the one who shared the call for submissions to Amerasia because they … I think it was their very first special issue on illness and disability. It was so exciting to see a journal about Asian American studies take this subject on.

I asked you, “I don’t know, what should I do? What should I write about?” I don’t have anything scholarly but maybe they’ll publish an essay. It was a really wonderful exercise to put my story out there. It’s one of the first my own personal stories really being out there. I want to thank you for that, for encouraging me to do that. You did encourage me.

I’m very in touch with my body and the changes with my body. I think people with disabilities who have similar conditions, we all realize that what is normal is on a continuum, and so is my functioning and my independence. It means it’s very fluid. People think independence means being able to do everything yourself, by yourself. That’s one way to look at it. Another way is to say, “As long as I can direct my own services, and direct my own care I am still being independent.”

Ellen:                  Sort of an autonomy or decision-making power.

Alice:                  That to me is the essence of what it means to be independent. A person that exercising their autonomy. People with disabilities are in a world that is still hostile, I think, to disability. We have to defend out autonomy everyday in these micro aggressions. Like you said about only navigating through physical environment, there’s really the social environments where kids make fun of you.

I remember where people were not just being very nice. In second grade a kid pushed me down in the playground because I was very wobbly and uneven and he just walked in. A kid pushed me and I hit my head and had to go home. Things like that happen, and those were really … it made you grow up really, really fast. It helped me become a sociologist because I really did learn about power, about different groups, about shared meanings. That, to me, was great about having being involved in sociology. It gave me this framework to think about disability as more than just an internal, biological difference. That really helped me channel my anger in lot of ways too. To become more of an advocate and to use that individual anger to help other people

I joke about being an angry, disabled Asian girl but it is something I’m proud of. It’s formative…I learned, as a disabled person in a non-disabled world, you really are acutely aware of certain cues and how far you can push things and how to frame things in a way. Sounds very manipulative, I know, but you have to be savvy about interpersonal relationships. I feel like growing up disabled really helped me in that sense. I had a very early education on that. People who become disabled later on, they really do suffer a real loss and grieving. This is what’s always, when I’m down …

Ellen:                  You hadn’t loss anything.

Alice:                  I don’t think so. I am conscious that my body has really changed a lot. I’m do think about my death and it might be another reason why I started this project is that I do wonder, I don’t think I’m going to have any children. I don’t really know if my siblings will have children. I think about my family, the Wongs, when we’re dead and gone who’s going to remember us and what we did, and what we were like? I do wonder what kind of mark I’m going to leave. I think about that a lot. That’s another egotistical, narcissistic reason for starting this project! The Library of Congress will have at least fifteen interviews I’ve done with people, and this one with you so that somebody will listen and maybe take notice.

It is weird. I do think about what’s it going to be like.

Ellen:                  Being dead?

Alice:                  Dying. I do think about that because I am basically weaker now than I was three years ago. I can definitely see differences within even ten years, like night and day. I really changed the way I’m able to do things. That’s just a reminder of, Gosh, that’s really coming up. Who knows for anybody right? All we can do is have coffee, enjoy life.

Ellen:                  Post pictures of everything you eat on Instagram.

Alice:                  Yes, and be with the people you care about. Enjoy every moment. I think about it a lot. Hopefully this is something for people, not just something for myself. Hopefully this is something you can leave for everyone to enjoy.

Ellen:                  If you don’t royally screw things up, at least trying to leave things at least a little bit better for the next person.

Alice:                  I think that’s the rule. I feel very honored that you interviewed me. You were really the first one so I’m really touched that you came here.

Ellen:                  I’ve been really honored to be asked.

Alice:                  Thanks Ellen.

Ellen:                  Thanks Alice.


Alice Wong

For more: http://disabilityvisibilityproject.com/about/

Twitter: @SFdirewolf

Ellen D. Wu is assistant professor of history at Indiana University, Bloomington. She is the author of The Color of Success: Asian Americans and the Origins of the Model Minority. From Dr. Wu’s profile from Indiana University: “Questions of relationships between the foreign and the domestic also fuel my work as a teacher. As an historian of the twentieth century United States, I offer a range of classes from the modern U.S. history survey to an upper-division intensive writing course on Cold War America. I also teach the histories of Asian Americans, the inextricable connections between immigration and the race in the United States, and America’s Pacific entanglements.”

Twitter: @ellendwu