An Open Letter to Ryan Murphy, et al.

An open letter to Ryan Murphy, Brad Falchuk, and Ian Brennan, creators of “Scream Queens”, and Rupert Murdoch, CEO of Fox 

Dear Sirs,

It has come to my attention that the latest episode of “Scream Queens,” entitled “Warts and All,” prominently features a character (described as “hideous” in the episode summary) who states that he has Neurofibromatosis Type 1. While I understand that the Chanel characters are always horrible people, I take issue with the episode title and description, as well as the line the NF1 character, Tyler, utters: “Look at me, I’m a monster!”

You see, my 2-year-old son, Benji, was one of the 1 in 3,000 births in the U.S. in 2014 who have NF1. I do not appreciate perpetuating stereotypes about the more visible (and rare) aspects of his condition. His life is complicated enough, given that he has increased chances of vision- or life-threatening brain and nerve tumors, repeated MRI scans to keep an eye on these things, and a 1 in 2 chance of dealing with learning disabilities once he reaches school. The last thing he needs is for shows like this to show his genetic condition in a negative light, treating him as some sort of beast to be rejected. The title is also misleading; NF1 causes tumors, not warts.

I am surprised that a show created by the makers of GLEE, a show that prided itself on teaching tolerance of groups that are often marginalized (LGBTQ, the disabled), has chosen to spread misinformation on one of the most common genetic disorders, implying that a C02 laser can easily take care of an extreme case of NF1 tumors. Between the fact that they can often grow back and that they also are commonly plexiform, or are wrapped around nerves and thus inoperable, this gives the misinformed public more ammunition to hurl at an unsuspecting person with NF1: “why don’t you just get them bumps zapped off?”

My concerns are already founded if you take a look at a few online recaps of the episode. One writer only referred to Tyler’s character as “Bubble Man.” I feel fortunate that my son is not visibly affected by the condition yet and may never develop the subcutaneous tumors featured on your show, but I shudder to think of what remarks may meet the students with NF1 from classmates having been presented with the “monster” of Tyler. Will they start asking their classmate if he or she will look like that? Children with NF1 are more likely to have executive functioning (organization) problems as well as stress and anxiety; you have done these children a disservice by spreading fear and ignorance with your popular platform rather than using it to educate and teach tolerance as you have in the past.

You still have a chance to make this right. Create a PSA to air at the end of a future episode sharing correct information on the condition, its commonality and its treatment options. Encourage viewers to find correct information at credible sources such as the Children’s Tumor Foundation (CTF.org). You can make a donation to a local Cupid’s Undie Run to raise funds for research and awareness for those fighting NF. Better yet, participate!

You can do better than this. Please return to your better instincts rather than portraying a real condition dealt with by about 100,000 Americans, including children, as a candidate for a freak show.

Sincerely,

Kristine Parker

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34 thoughts on “An Open Letter to Ryan Murphy, et al.

  1. I have NF1. It has affected my life a great deal and I wouldn’t wish it on anyone. I am so deeply offended by this. I didn’t ask to be born with NF. I didn’t ask for the tumors, the blindness, the pain, the disfigurement and the bullying I receive from strangers. How this show portrayed this condition is entirely unacceptable.

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  2. my grandaughter has nf1and I am appalled at the ignorance and insensitivity of your show.thank God she is not allowed to watch this misinformed trash.schools are filled with bullies without shows such as this that promote intolerance of children born with disabilities.Shame on you who should know better.You are a disgrace.

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  3. We just lost our daughter to NF, and the ignorance to the disorder is part of why. The insurance company is as ignorant as this tv show was. Shame on you for spreading the ignorance instead of jumping at the chance to bring awareness. If you did enough research to know what fibromas can look like in extreme cases, you could have gone a little further to actually understand and educate!

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  4. Thank you for sharing this. I shared the link to your post on my blogs Facebook page. I have NF, and it makes me so sad to hear words like “hideous” and “monster”. Just think of all the teens that watch this show that could be affected by their choice of words.

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    • Thank you, Danielle, for your comment! That exact thought came to mind for me. My son is too little to get those comments yet, but I fear for his school days if he has outward signs that make him different. There is just no way of knowing if that’s in the cards for him. I feel for the kids dealing with ignorance right now.

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  5. Fortunately, my daughters and my granddaughter were all born healthy. My sister, on the other hand, was born with several physical and mental problems. Because of them she lives in a group home. So I can sympathize with you regarding your child having NF1. I do, however, wonder, if you watched the entire episode. If you did then you would have seen the boy developed a relationship with one of the “mean girls” and it was the “mean girls” who raised money for treatment for him. Yes, he did say “Look at me, I’m a monster!”, but he also said “thank you so much for seeing the real me beneath all these tumors.” I appreciated the way the show showed the struggles a person might have with NF1. For example, in one scene he is on a date with his girlfriend and some others started teasing him. The NF1 sat speechless as his girlfriend defended him by saying, “You cannot speak to him this way. He is a beautiful soul.” Yes, there was also humor, but the point of the scene was not lost. Also, because of the show I now have an awareness of NF1 and would like to make a donation towards the development of treatments and cures. Is CTF.org the best pace to make my donation? Thank you!

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    • Laura,

      Thank you for your thoughtful comment. No, I did not watch the entire episode, though I watched the beginning and read several recaps of it. I am glad that they had a few characters that were able to look deeper and see the person behind the unusual exterior, but I still take issue with the episode title and summary, as well as their determination that it is as easy as getting some laser surgery to remove that severe amount of tumors. I would prefer that if they invoke the name of this disorder that they use it to educate the public, since despite its commonality, many have never heard of it, and all they know is what is shown in popular culture such as TV shows.

      Children’s Tumor Foundation is the main funding source of most of the scientific research into better treatments and a possible cure for Neurofibromatosis. Their charity would be a great place to donate. Thank you for your generosity.

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  6. Wow. I am extremely disappointed in Fox. My daughter, Nicole passed away at 8 years old due to complications of NF. She was absoulutehy beautiful, gently and kind. It aweful that an organization has an opportunity to help raise awareness and create a following to help find a cure , so other parents don’t loose their children to the disease. Shame on FOX for being idiots and uneducated!!!!!! Go to Ctf.org

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  7. Did anyone who is responding actually watch the episode? If you watched the episode you would have also heard, “thank you so much for seeing the real me beneath all these tumors” and “you cannot speak to him this way. He is a beautiful soul.” I thought the portrayal of the NF1 character was inspiring. He showed strength and courage. If anything the show brought awareness to the disease and might help raise money to help find treatments. I just made a donation to CTF.org as a result of watching “Scream Queens”.

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  8. Living each day with NF is a painful challenge. We do not need to be portrayed as freaks or monsters. We already get the stares, the finger pointing, and the nasty remarks, why add fuel to the already burning fire?
    I’ve lost a dear friend to NF on February 2, 2016, and I’m fighting this terrible disorder each day. I see doctors all the time, have tests run to make sure nothing has turned cancerous, and the surgeries are never ending. Please educate the public, we aren’t freaks, we are people who just want to live a normal life as much as possible.

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  9. Fox how could you I suffer with NF.1 I have tumors every where I suffer with pain daily put your self in our,shoes you can’t you don’t have it hard to get a job hard for relationship hard for every thing me where do I start I would love to come to speak with you and educate on this. You can go around betraying people if you don’t know anything about us we are not monsters we are human we cry we are depressed, we suffer anxiety next time use a real person with the disorder.

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  10. I live in uk and have not seen whole episode and what I did see made me cry! My 10 yr old son has NF and has a plexi on his leg and learning difficulties but there is too many kids and adults loosing their life’s! (Fly high Dawson 💔) Due to NF! Living with pain daily! struggling throughout school! Many Surgeries! And many other complication! Shame on programme makers!

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  11. Thank you for writing this letter. I myself have NF1 and so does my 4 yr old and my 9 yr old. My other 2 thankfully didn’t recieve it. But after this show its heartbreaking when we are trying to raise our children to be confident and that it’s ok to be different. Here is a girlfriend coming her “hot” boyfriend is now a monster! If my children ever saw that episode it would bring them down they would be sad. Because they know they have NF and they would feel that people would think the same about them. I hope the community can get a formal apology but I highly doubt it will happen.

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  12. I lost my best friend to complications of his Schwannonatosis last summer, so your letter really hits home. Thank you for posting such a well written and well informed piece to share with them. I really hope they actually read it and rethink their decisions on how they portray people. it was refreshing to read your words this morning – thank you!

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  13. I have NF as does alot of others in my family. My little brother,my daughter her 3 boys ( my Grandsons ages 2 and 4) . I have pain that never goes away. My 2 year old grandson has half of an eye ball. he is blind in 1 eye. My 4 year old grandson has 3 hip tumors.Usually we do not get tumors till puberty but little Gabe 4 was born with his.
    My Mother died from NF .It kills. It hurts. I will most likely not live to see 60 years old. I do not care about that my main focus now is the babies. My grand-kids. I hate they will have to deal with pain like I have. It is un fair

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