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 firstname.lastname@example.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.
For Part 2 of this interview: http://wp.me/p4H7t1-Mn7
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.
“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.
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.