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.
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.