Everything Everything movie poster showing Amandla Stenberg and Nick Robinson

'Everything, Everything' Draws Criticism for Its Portrayal of SCID and Disability

279
279

Editor’s note: This article contains spoilers for the movie “Everything, Everything.”

Disability activists and rare disease advocacy groups like the Immune Deficiency Foundation (IDF) are speaking out against “Everything, Everything,” a new movie based on a book by Nicola Yoon, about a young woman with severe combined immunodeficiency (SCID).

The film, which comes out on Friday, tells the story of Maddy Whittier (Amandla Stenberg), a teenager whose mother prohibits her from leaving the house due to fears her immune system cannot handle the outside world. Whittier then falls in love with her new neighbor, Olly Bright (Nick Robinson), who convinces her to “risk everything… for love” and go outside.

“It is frustrating to see Hollywood rehashing the same tired storylines that go back to ‘The Boy in the Plastic Bubble’ in the 1970s,” Carol Ann Demaret, the mother of David Vetter, whose story the movie “The Boy in the Plastic Bubble” is based on, told The Mighty. “While playing off the theme of the isolation people with SCID supposedly face is a convenient device for storytelling, these narratives are completely false. They help to spread misinformation that is harmful to people living with this disease, hurtful to parents, like myself and thousands of others who have tragically lost a child to SCID.”

Others, not necessarily in the rare disease community, say the film also promotes the idea that people with disabilities cannot lead full lives.

During the course of the movie, it is also revealed that Whittier doesn’t have SCID. Rather, her mother has Munchausen’s syndrome and has faked her daughter’s illness all these years.

“The plot twist at the end where it is revealed the main character never actually had SCID is particularly upsetting,” Marcia Boyle, president and founder of the Immune Deficiency Foundation, told The Mighty. “Most people with SCID and other [primary immune] diseases don’t exhibit visible symptoms, so accusations of hypochondriac behavior is something our community deals with all the time and the reinforcement of this false stereotype is both worrisome and dangerous to us.”

IDF hopes by getting out in front of the movie, it can help people better understand SCID and the challenges those living with a compromised immune system face. The organization said in a statement:

The reality is that people with SCID are not forced to live their lives in a sterile environment, which is an antiquated notion that has not been the case for many years. In fact, it was never a standard treatment, having only been used in a handful of cases. Most persons with SCID who have received treatment lead healthy and productive lives with no need to shield themselves from the world.

IDF understands that the concept of being forced to separate yourself from the world is an enticing tool for storytellers, but IDF would hope that entertainment is not an acceptable reason to do harm to an already vulnerable group by spreading false information about their condition.

Boyle added:

Rare disease groups like the Immune Deficiency Foundation face so many hurdles to raise awareness about the symptoms and realities of living with a chronic disease, so movies like this are a real step backward for our community. In the future, we would ask that writers and filmmakers take the time to research the conditions they intend to portray instead of exploiting them through detrimental and completely false representations.

279
279

RELATED VIDEOS

JOIN THE CONVERSATION

The Problem I See With 'Everything, Everything' as a Mom to a Baby With SCID

4
4

Editor’s note: This post contains spoilers about “Everything, Everything.”

There’s a new movie coming out soon called “Everything, Everything.” It’s about a girl who has severe combined immunodeficiency (SCID), who’s lived her entire life indoors, never able to experience the outside world because she could die — until that fateful day she meets the boy next door (through the window, of course) and decides to risk it all. I’m not usually one to share my opinions but… this is just too near and dear to my life, and I cannot stay silent. After all, awareness is the first step in making a difference, right?

I’m a sucker for young adult books and movies. It’s not that I think “Everything, Everything” is going to be a horrible movie with bad acting. I’ll probably eventually see it, and if I can get past the false information about SCID, I might even like it. Like I said, I am a sucker for cheesy love stories – the ones that draw you in with the drama and unrealistic story lines. The problem with “Everything, Everything” is that SCID is real. SCID has taken the lives of far too many babies. SCID affects real families across the world. I have cried endless amounts of tears over what SCID has done to my family, to my daughter, and to families that were once strangers who I now have come to know and love.

Still not sure what SCID is? Let me enlighten you! Severe combined immunodeficiency, more commonly known as “bubble baby disease,” is a rare, life-threatening, genetic disease that leaves babies with no immune system, no way to fight off any sort of illness. Even the common cold could be deadly. These children must stay in isolation either at home or in a hospital room while waiting for their only chance at a healthy life: a bone marrow transplant — a process that often involves high doses of chemotherapy, weeks to months of living in the hospital, parents separated from their other children, siblings not able to bond or play together.

Can you just imagine receiving an unexpected call from a pediatrician you’ve never met telling you to immediately take your not even 2-week old baby to the hospital for blood work? “Keep them covered and away from people. They likely have a life-threatening illness that you’ve never even heard of before.” That’s if you’re fortunate enough to live in a state that screens for SCID at birth. Some families find out later on, only once their baby has caught something and isn’t getting better. Sometimes it’s too late. Can you even imagine not being able to kiss your sweet little newborn? Telling new grandparents, aunts, and uncles they can’t hold your baby, they can’t even visit? Staying in strict isolation for months to years, living in a hospital room? Praying for a matched bone marrow donor just so your baby can have a chance to live? Or hoping your child is eligible for an experimental treatment because no donor is available? Watching as grown adults hold your screaming infant down to try to gain access to a vein? I could write a list a mile long of the struggles SCID families go through. But I think you get my point.

The problem with “Everything, Everything” is not that Hollywood is once again using illness to tug at the heart strings of their audience; that’s never going to stop. The problem is it is a complete misrepresentation of what families affected by SCID actually endure. I hate to spoil the story for you, but I’m going to anyway. One of the biggest problems with it is the mother has made it all up — her daughter doesn’t have SCID. Yeah, yeah… I know this is a fictional story, it’s just a movie, I get it. But as a mother to a child who actually has SCID, this is a slap in the face, a punch in the gut. I live in a constant state of worry, wondering if I am doing enough to keep my baby healthy. I would never wish this life on anyone, and the thought that any mother could ever force this life upon their own child is horrific. Oh, how I only wish my baby girl didn’t have to fight for her life. Right now, I can only dream of the day my daughter can go outside and play in the yard, meet other children, be held by her grandparents who haven’t held her since she was a week old. One day…

dad and mom with baby with SCID

I’m not trying to discourage you from seeing this movie. You can make that decision for yourself. Go be entertained, eat some popcorn, drink an ICEE. All I am asking is that if you do see this movie, please, please, please… as you walk out of that theatre, remember that SCID is real and it is not at all like this movie is going to portray. Remember my baby girl and others like her who are fighting this battle in real life.

Follow this journey on Life With Riley.

We want to hear your story. Become a Mighty contributor here.

4
4
JOIN THE CONVERSATION

How Migraines Can Infiltrate Every Aspect of Your Life

58
58

Chronic migraines are an event that many would describe as traumatizing. Headaches are no fun in their own right, either. But if you’ve experienced migraines, you know you are dealing with something that goes far beyond your general headache. There’s no question you’ve entered another realm of experience.

illustration of person having a migraine

Many of you reading this may know by now that one of my main specialties is working with people who struggle with migraines (as well as related emotional components of migraines, such as anxiety and depression, which many migraineurs can experience hand-in-hand). I work with migraineurs all over the world, helping each person learn, understand and work through their contextual, emotional life connections to their migraine experience. I also help people emotionally manage the global impact migraines have on their lives and, further, work on how to still realize life goals even with the invasion of chronic migraines.

People who struggle with migraines will be the first to tell you it is often a very lonely struggle. What makes it even more difficult is that people who don’t experience migraines tend to also not understand the severity of a migraine experience. When many who haven’t experienced migraines hear, “I have a migraine,” they tend to interpret it as a person just having a “bad headache” – you know, a headache – that annoying pain that accompanies you through your day and hurts. You may take a few over-the-counter pain killers, but it doesn’t derail the course of your life. That’s what a non-migraineur often tends to hear when someone says they have a migraine.

If you want to draw the ire of a migraineur, talking about their migraine on the level of a general headache is a quick way to do it.

I’m not going to provide a symptom list to explain the difference between a headache and a migraine. But what I will do, as a psychotherapist and migraine coach, is give an experiential picture of someone’s life with chronic migraines.

A person who lives with chronic migraines generally lives every day in fear of the next one. Each person has a very individual experience of a migraine, and therefore each migraineur doesn’t necessarily experience the same presentation as another person might. Regardless, none of the experiences are in any way pleasant.

A migraine is so significantly debilitating that the moment a migraine strikes, the person generally knows their day (if not the next few days) is likely over. Not just over in the “I’m going to go home and lay on the couch” manner…over in the sense that they will be in bed with the lights off and blocking out all noise as much as possible. Any sound or light during a migraine can heavily exacerbate the entire experience – increase throbbing headache sensations, nausea, vomiting, etc. The amount of sensitivity a person experiences during a migraine is so great that a migraineur almost has pretend to not be present at all in order to get through it.

The experience of a migraine is so intense, so painful and, for many, so neurologically incapacitating (confusion, vision trouble, flashing lights, numbness, slurred speech, fainting, vertigo, etc.) that even when a migraine isn’t currently happening, it has an impact on almost everything the person does every day of their lives: what they should or shouldn’t eat, how much sleep to get and what sleep schedule to follow, how to control the climate around them, if/where they should travel, what jobs they can hold, how it impacts sustaining a relationship, if they can exercise or have sex without it triggering them, if they should plan to go to that event in two weeks and what if they get a migraine en route or when they’re not close to home? And then, what other pleasures may eventually become triggers? The list of possible effects goes on.

There are many medical and alternative forms of interventions for attempting to treat migraines. However, many people are not effectively treated by what is available. For some people, what is out there to treat the medical component of migraines brings little to no relief.

I have written extensively on the role emotional history can have in chronic migraines, and the importance for each migraineur to learn about their own emotional life history as a necessary piece of lowering their internal migraine threshold. While I have seen quite positive results with this for people, chronic migraines seem to respond best to a “kitchen sink” approach. Hopefully, with the right combination of treatments and supports, including a neurologist, a therapist who specializes in migraines and whichever alternative treatments are preferred (acupuncture, naturopathic, herbalist, reiki, yoga and many other possibilities), each person can hopefully get to the core of and manage their chronic migraines.

In the meantime – and back to the point about the difference between migraines and headaches – a person who “has a bad headache” likely doesn’t have to surround their whole life around it. Sure, a bad headache is unpleasant, and who wants that? But migraines are truly life-changing. People who don’t realize the severity of this and imagine that a migraineur is just babying themselves – this is a lot of the reason that migraineurs tend to feel alone and feel that even the people closest to them don’t understand what they endure.

Support and understanding are key. Migraines are a tough affliction because people from the outside can’t see what’s happening inside (and people who say it’s all in the migraineur’s head just make it even worse). But it’s real, and it’s awful. Give the benefit of the doubt that it’s as bad as the person says. And support them in getting the appropriate level of care. Remember, even when a migraineur is having a good day, they are likely still wondering when the next one is coming.

We want to hear your story. Become a Mighty contributor here.

58
58
TOPICS
JOIN THE CONVERSATION

The Conversations We're Avoiding About Fetal Alcohol Spectrum Disorder

291
291

Here we are again. Another study shows that the U.K. is among the top countries for drinking alcohol during pregnancy. A new Norwegian study shows that 28.5 percent of women in the U.K. drink when they know they are pregnant – placing the UK ahead of Russia (26.5 percent) and Switzerland (20.9 percent). This follows on from an earlier predictive study by the Canadian Centre for Addiction and Mental Health (CAMH) that showed more than 40 percent of pregnant women in the U.K. drink alcohol. The difference between these numbers can and will be debated by the experts. But let’s not miss the point.

The implication is staggering.

These figures show that entirely too many pregnancies risk damage to the brain and bones of the developing embryo or fetus. Most people are shocked to learn that fetal alcohol spectrum disorder (FASD) is considered to be more prevalent than autism. In fact, many kids with FASD are misdiagnosed as having autism. Our son was, originally.

We have to reframe how we think about this issue, beyond the stigma. The Norwegian study shows that women who are older and more highly educated are more likely to drink during pregnancy. Another recent study showed that “75 percent of women who do drink during pregnancy are consuming alcohol together with a partner. Of these women, 40 percent of drinking episodes are initiated by male partners.”

In a country like the U.K. where the pub culture run deep, this lack of awareness and such widespread drinking during pregnancy means that several thousand kids each year are unknowingly born with a hidden disability. They may face lifelong challenges with executive functioning – compromising their ability to think abstractly, to link cause and effect, and to process multi-step instructions. They may require additional cognitive support and find it difficult to control their impulses. Their brains may easily become overloaded by stimuli they cannot process quickly enough, causing meltdowns and in some cases violent outbursts. These kids will grow into adults whose lives can be successful, but who will require an underpinning of consistent support and understanding to help them achieve their potential.

The U.K.’s response to FASD lags dangerously behind other countries, at great cost to individuals, their families and society at large.

Funding for diagnosis and support can be a post-code lottery. Despite the fact that the government recently stated it is the responsibility of local Clinical Commissioning Groups to commission relevant services, far too often this responsibility is ignored, under-addressed, and/or under-funded by straining bureaucracies. This bureaucratic nightmare can be compounded by misinformation or prejudice. Families can find the process of seeking a diagnosis bewildering. They are often turned away or denied access to professionals adequately informed on FASD.

Even professionals misunderstand the fact that for every child with the facial features of the more widely known fetal alcohol syndrome, experts say there may be as many as nine or 10 others out there on the spectrum with no visible sign of the disability. Parents, including courageous birth mothers who confirm drinking during pregnancy, are often discouraged from seeking a diagnosis by professionals who tell them not to “label” their child. This can deny the child and those around him or her the lens that allows a proper understanding of the whole child to unfold.

Many schools remain unaware, uninformed and/or unwilling to address the needs of those with FASD. There are kids in classrooms across the U.K. who are undiagnosed, unsupported and drowning in an increasingly inflexible educational system. Recently we have seen reports that schools are cutting TA positions, that most basic of support for kids with disabilities.

Denial, refusing to work with concerned families, and spouting on about inclusion while denying kids access to education to which they are entitled is quite frankly, shameful, and totally unworthy of a supposedly caring society. Families, foster care and adoption services are being strained beyond their limits.

Worst of all, as a result of society’s inaction on so many levels, kids are hurting. Unsupported and misunderstood, they often encounter challenges that compound as they grow older, when the school’s curriculum becomes more abstract, social relations become even more confusing, and pressures increase all around. With depressing predictability, they are labeled behavioral problems. They too often end up self-medicating, getting into trouble, or worse. This societal head-in-the-sand approach to the figures about drinking in pregnancy leads to a very dark place for too many. These negative outcomes can often be avoided with proper awareness, diagnosis, understanding and support.

People with FASD deserve the dignity of a diagnosis and access to education and services to which they are entitled due to their disability.

The guidance from the leading medical authorities in the U.K. is clear: “If you are pregnant or think you could become pregnant, the safest approach is not to drink alcohol at all.”

Why aren’t we listening? We’re willing to give up soft cheese during pregnancy but not alcohol, despite the risk of brain damage? I just don’t get it.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Emituu.

291
291
TOPICS
JOIN THE CONVERSATION

I Shouldn't Be Ashamed to Call for Help When I'm in Pain

813
813

Tonight my pain is at an unbearable level. I’m choosing to write this to try occupy my mind, because what else can be done?

a woman's selfie of her frowning and leaning on her hand

I want to bring to light the feelings I am currently experiencing. Worry, fear, nervousness…all about this pain and how I’m going to take action against it. I would have usually taken Morphine by now but I’ve run out. I’ve run out of all my strong medication to try to combat these kinds of situations (not that they work). I have a pain diary, and I try to fill it in every day. I’m going to write here what I wrote in there and show you the main issue with my current situation.

May 7th–8th

My pain is very high today, and even worse now. My side pain is flaring, I feel sick and my back is in agony. I want to call a paramedic but I don’t want to waste their time. But I’ve run out of all my pain medication. I don’t want to be a burden on the hospital. They were here two weeks ago and now I need help again. I’ve almost overdosed on paracetamol in an attempt to make the pain stop. I’ve got burns from my hot water bottles. I need help but I don’t know what to do…

Now this is the problem. I’m in agony, the pain I’m currently experiencing I can hardly put into words, my right side feels like it’s in a vice, it’s difficult to breathe because it hurts and every single movement, the littlest shift in my body, causes the hottest, sharpest, deepest stabbing pain I’ve ever had the unfortunate pleasure to experience. I’m in pain; I should be able to easily contact a paramedic for help. That’s what they’re for – to help people who are in pain. But I can’t. I’m stuck on that fine line between “I won’t call them” and “I can’t call them.”

There are constantly posts on my Facebook about how we can improve the emergency rooms in the UK, and the amount of comments saying that they should turn people with chronic pain away or make them pay to use a bed…it hurts. It’s the deep, empty gut feeling that those comments are directed at you and me, even though we’re doing nothing wrong. We’re simply seeking help. If an animal was in this kind of pain and left untreated it would be considered animal cruelty. Why is it any different for a human? I shouldn’t have to sit here and wonder when my pain is “bad enough” to justify calling a paramedic. Well, now is too bad, yet here I am, unable to call because somehow I feel like this is my fault. That my flare-up is something I should be able to prevent.

We should be able to call for help when we need it and not worry about wasting people’s time. I hope there are people out there who are brave enough to call. Who say, “I need help.” So call for help. I hope they fight against the people who say we’re wasting time and taking up a hospital bed. I hope there are people out there who keep reminding hospitals and paramedics that our chronic pain is very real and needs efficient pain relief. I hope that can be me one day, but for now I will sit and struggle with pain until I can’t handle it anymore, until it feels like someone’s hammering railroad spikes into me, till I vomit and pee myself from the pain.

I need help. I shouldn’t be ashamed to ask for it – none of us should.

We want to hear your story. Become a Mighty contributor here.

813
813
TOPICS
JOIN THE CONVERSATION

5 Tips for Evaluating Health and Disability Charities

63
63

Tax time forces many of us to look at where we spend our money. When I was working, I was able to take care of my family and financially support a few non-profit organizations with small cash donations. I gave a little money to a lot of organizations, but I did so without really knowing how the organization was using my money. For many years my benchmark was simple; if an organization asked, and if I believed they were doing good things, I made a donation at whatever level I could.

My finances changed dramatically two years ago when my battle with complex regional pain syndrome and cluster headaches forced me to stop working. I’ve realized how important it is for me to learn about the organizations I choose to support with my limited time and money. Simply put, I need to think like an investor, not just a donor. A donor gives because they are asked, but an investor gives because they know and care about the organization’s long-term future. As an investor, I have a duty to learn all I can about what the organization does, who is in charge, where it gets its money, and how they spend it.

It is not always easy to find reliable information about an organization, but if you know where to look, a short online search can give you a wealth of information. Here are some tips that investors in non-profit organizations may want to explore:

• Search their website. Consider an organization’s website as the front door to its operations and core mission. A disease-related organization’s mission, for example, might be to provide support for those affected, education about the disease, and research to find a cure. An organization must be accountable and transparent to its investors and their website should provide an annual report of its accomplishments from the previous year and goals for the next. You will need to review several annual reports to evaluate if the organization is making progress on the previous year’s goals.

• Download their tax returns. Examine the organization’s tax returns to learn about how they operate, where they get their funding, and what proportion of their money is spent on programs to help people versus administration and fundraising. There are a few exceptions, but most non-profit organizations’ tax returns are public information, meaning anyone can inspect them. I find ProPublica  to be the easiest place to find these documents. When you compare two or three years of the organization’s tax returns, you can get a sense of the organization’s financial stability over time.

• Identify their funding sources. In order for an organization to remain financially healthy, it must seek funding from different types of revenue streams, such as grants and corporate and individual donations. For example, an organization may accept donations from pharmaceutical companies or charge membership dues or fees to attend their events. Investors need to know where the organization gets its money. If the organization is growing and thriving, you will see a steady increase in the money they bring in (revenue), the money they spend (expenses) will remain proportional to their revenue, and their bottom line (net assets) will remain stable from year to year.

• Learn where they are spending their money. There are well-established benchmarks for how much of an organization’s budget should be spent on direct programming versus administration and fundraising. Organizations should be spending at least 75 percent of their revenue on programs that benefit their members and less than 25 percent of their revenue on overhead. As a reference, Charity Navigator publishes an annual report of CEO pay that finds mid-sized organization pay their CEO’s in the low $100 thousand. Regarding fundraising, the Better Business Bureau’s accountability standards for indicate fundraising expenses should not exceed $.10 to $.35 per dollar raised. As an investor, we want to see these figures as low as possible and ensure they are aligned with organizations of similar size and type.

• Engage with the organization at all levels. If an organization is worthy of receiving your financial support, it should also be worthy of receiving your time and talent. Volunteering for the organization is an important way for you to increase the value of your investment. Non-profit organizations depend on volunteers to help them run programs, raise funds, and promote awareness. When you find the right organization, consider pledging a monthly, rather than a one-time annual donation. Large foundations who offer grants to organizations want to see repeat donations because it is an indication of a healthy, growing organization that is capable of using their grant money effectively. Staying involved with an organization helps ensure your investment is used to its fullest potential.

As a person with a disability, I have too little time and too little money to waste on an organization that is not using its resources wisely. In the past, I made donations to organizations because they asked, and because I believed they were doing good things. In the future, I am determined to raise the benchmark for who I support. As investors, we are in a unique position to help ourselves by helping others. Each of us have the responsibility to learn everything we can about an organization and to use our power as investors to make positive changes within an organization. It will take a bit of effort, but once you have found an organization that is a good fit for you, please share your research and experiences with others in your community. Together, we can make our money work for you, me, and us.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Echo EVG.

63
63
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.