The new teenage romance film Five Feet Apart tells the fictional story of two smitten cystic fibrosis patients who can never touch – but some real-life patients say the movie is inaccurate and even dangerous
Much of the cystic fibrosis community is recoiling and speaking out against Five Feet Apart, the new film, hitting theaters Friday, about two smitten teenagers with the condition.
The filmmakers behind Five Feet Apart worked with a cystic fibrosis foundation and interviewed people living with the incurable genetic condition in preparation for the film, but some say its portrayal is dangerous and inaccurate.
Portions of the community are also slamming social media influences and companies who posted comparisons of the movie’s characters who are too sick to touch other people to the ‘hardship’ of long distance relationships.
And amid the controversy is a bitter irony. Many cystic fibrosis patients can’t go see Five Feet Apart for the same reason the two main characters must keep a safe distance: Another moviegoer’s mild infection could be deadly to them.
Some 70,000 people worldwide are living with cystic fibrosis, a rare genetic disorder that makes mucus that should be thin and slick become sticky, clogging the lungs, damaging organs, and leaving them vulnerable to infections that can prove deadly for them.
People with the condition have an average life expectancy of about 40, and most will die without a lung transplant.
The movie takes its name from a rule that CF patients like its main characters Will (left, played Cole Sprouse) and Stella (right, played by Haley Lu Richardson) by must remain six feet apart at all times – not five, one of several inaccuracies pointed out by CF patients and bloggers
Five Feet Apart is a fictional portrayal of two teenagers, Stella and Will (played by Haley Lu Richardson and Cole Sprouse, respectively), with cystic fibrosis (CF).
The actors have garnered praise for thoughtful portrayals of patients with CF, and for keeping the focus of media events for the film on the condition.
Though certainly there’s been gratitude from the CF community that the film will (hopefully) raise awareness of the disease and drive support to research and advocacy groups, a number of rather fundamental flaws have been raised, too.
For starters, the title.
‘Five feet apart’ is a reference to the distance people with CF are supposed to keep between themselves and others with the disease or another infection because CF patients are especially vulnerable to infections which can fatally intensify their condition.
Only, the rule is actually to stay six feet apart.
The title is apparently suggestive that the pair of teenaged lovers break the rule, a little, to be close to one another – but that’s not the only inaccuracy members of the CF community take issue with.
One blogger and CF patient, Julia Rae, called the film’s trailer ‘dangerously inaccurate.’
Citing scenes where Stella and Will are in close proximity to one another without medical grade masks, even touching one another’s medications – behaviors that would be highly dangerous for real CF patients – Rae said the movie is not raising the right kind of awareness.
‘Awareness that comes from misinformation is damaging,’ she wrote.
‘There is an ethical responsibility when we are talking about the risk to human life.’
Others have seemed more open to the film’s need to take ‘creative license’ to portray the story, but ad campaigns drew some comparisons that CF community members found cringe-worthy.
Social media influences like Brooke Butler made #ad posts comparing the plight of CF sufferers to missing loved ones living in other states (left), drawing ‘disgust’ from people with the disease, like Elsie Tellier (right)
Several social media influencers – including Annie LeBlanc, Brooke Butler, Alan Stokes and Jayden Bartels – posted ads for the movie, then deleted them – but not before they could be screen-capped by upset members of the CF community.
In their posts, they related the plight of CF patients to missing their loved ones that live in other states.
Instagram user @battling 2breathe said the posts ‘infuriate’ her.
Instagram user @Battling2breathe called the ads ‘infuriating’ and ‘a shame’
‘…this is how the’re “sponsoring CF”. They barely mention CF. Living in a different state from your family member and having to do phone calls is NOTHING like two people with deadly bacteria who can get very sick by touching.
‘This is being twisted out of being twisted out of context and it’s a shame. You can go visit your cousins, aunts, and uncles without possibly killing them.’
Other CF community members labeled the influencer ads a ‘slap in the face’ of the community and ‘ableist,’ calling out director Justin Baldoni.
The filmmakers hosted a few screenings for CF patients at hospitals and through foundations.
It’s also been noted that, for many people with CF, going to regular theater screenings of Five Feet Apart could be dangerous because the close quarters to one another could expose them to an potentially deadly infection – just like film’s characters.
But for other CF patients, Five Feet Apart director Justin Baldoni posted a video of several real-life CF patients, with instructions for how to protect one another if they’re going to risk seeing the movie in theaters:
- Bring sanitary wipes and hand sanitizer
- Wear latex or rubber gloves
- Wear purple to identify themselves
- But stay home and see the movie later if they have an infection