There’s been a ripple through the Marfan community this week. Some American comedians I’ve vaguely heard of (my world is muffled by nineteenth century poet’s letters to their dentists) have taken it upon themselves to mention Marfan syndrome in their latest film, The Internship.
Instead of using their immense media power to spread lifesaving information to the suspected thousands of people who don’t know they have Marfans, Vince Vaughn and Will Ferrell decided it would be easier to throw this out there, apropos of nothing:
“C’mon, Marfan syndrome. You know, Marfan. Big man’s-disease. Giant killer.”
It’s crass, unfunny, and worst of all, untrue.
The National Marfan Foundation have released a statement urging the film’s producers to use this opportunity to spread the word about this often fatal disorder, and also pointing out the obvious: it was a stupid thing to say. Reactions from individual Marfs have ranged from “I’ve heard worse” to this, which reads like a punch in the gut:
A Virginia man, who lost his two-year-old son to Marfan syndrome in 2011, wrote that he was “extremely upset with the lack of taste, concern and respect concerning this disorder.”
The blogger Maya, also known as MarfMom, is, as always, joyful and positive, and has written about the film. She rightly thinks we ought to use this opportunity to educate, because the danger of the line is that it spreads misinformation. Half of people with Marfans don’t know they’ve got it. They go without medication, take part in dangerous activities, and may not find out until they’re in the back of an ambulance. Accurate information in the public eye is vital.
‘Big man’s disease’? Marfan syndrome affects men and women equally. ‘Giant killer’? Not all Marfs are exceptionally tall, and even so, they tend to be thin or unmuscular. In fact, if I had to pick a mythical creature to represent Marfans, it would be the willowy elves from Lord of The Rings. They’re long, they’re languid, and they’re sick to the back teeth of orcs crawling out of the woodwork. And what is this ableist obsession with fantasy monikers anyway? Giants, dwarves, monsters. Anything but human.
Handy rule of thumb: If you don’t have a disability, don’t make jokes about it.
I’m going to have that printed on little glitzy flashcards to make it all the more memorable, because although it’s basic human decency, some people still struggle with it.
All the Marfs I know make light of our health among ourselves, our friends, and families. Laughter is useful, particularly when – and this actually happened to me – a saleswoman earnestly informs you your incurable illness will clear up if you just drink enough aloe vera juice.
But if you don’t inhabit that sphere, you can’t assume what people’s thresholds are. You can’t assume what people are just about managing to cope with, what their history is, who they’ve lost.
Another thing Vaughn and Ferrell might be unaware of is that people with a long-term health conditions are strongly encouraged to keep their feelings to themselves. Classic derailing: “It’s only a joke, don’t take it so personally, no-one will take you seriously when you’re angry”. If you’re going to speak out about ableism you must cloak yourself in charm and detachment, as if this wasn’t your everyday life being discussed. Heaven forbid you become one of those frightening party-pooper militants who lurk in drains with Pennywise the clown.
Yes, it’s just a weak joke in a film unlikely to go down in cinematic history. But there will be kids who’ll suffer in school because of this. There will be adults who’ve lost a child or a parent or a friend who will have to smile politely at jokes like this from colleagues, strangers, and even friends who, because they’ve seen it in a mainstream film, think it’s harmless behaviour.
I had no idea you called yourselves “Marfs”, hope you don’t mind me finding that a bit hilarious! Almost as good as borborygmus… Anyway, I learn something new every day, always useful to learn about diseases from people who have them rather than from pathologists in lecture theatres, gives a bit more insight into what it’s actually about.
I see you’ve met Aloe Vera lady – presumably the same one who’s been haunting Cambridge for years gone by, if she then started trying to persuade you to start selling Aloe Vera in her wierd pyramid marketing scheme, that’s the one.
Too right about the range of body shapes that “Marfs” 🙂 can have – a colleague of mine worked with a rather corpulent nurse who never knew she had Marfan’s – until she suffered an aortic dissection. Fortunately she survived, but it’s not the best way to find out something like that, and not the easiest sort of thing to crack jokes over.
Thanks for reading, Basil!
I love the ‘Marf’ thing! It sounds like a kind of shy woodland animal. 🙂
I had no idea the aloe vera person was that prolific. This was years ago, but I still find myself laughing about it.
I noticed your comments about the PRB and I am a relation to the Hancock family of the sculptor. It was remarked in the family that Dante Gabrielle Rossi admired a sister of John Hancock named Maria Hancock and painted her on several occasions.
She was very smitten by DGR and they were linked romantically but they of course did not marry.I`m fascinated by DGR`s sister Christina and her poetry that I find very stirring. “And now she sleeps the sleep that no pain can awaken” comes readily to mind. I collect 19th century landscapes and Genre scenes and find the Georgian and early Victorian ages fascinating.
Thanks for reading! I had wondered what happened to Hancock, what with his financial problems and the way he seemed to fade out of the public eye. I’d love to know more about Maria. DGR did have a way of accidentally-on-purpose making everyone fall in love with him.
I can recommend Dinah Roe’s book, The Rossettis In Wonderland for more about Christina (Dinah is a huge Christina fan).
I was diagnosed with Marfan in 1988 and at the age of 18 I lost my mother to the condition she was only 36, my brother passed away aged 37, I am the eldest child and I am 42 and I have now been re diagnosed with Loeys Dietz syndrome which was previously named as Marfan Syndrome. Every day I question my own mortality with regards to this life threatening condition. I have already had to undergo open heart surgery and am scheduled for more within the next 2 months which will have taken 6 months to organise as it is so complicated. I have had 24 hospital appointments so far this year for not only my heart which is affected by this disease but also my joints and lungs which are also affected. To make light of this horrific condition which to be honest here in the UK most doctors don’t know much about it, is horrendous. Perhaps the film producers should make more effort in obtaining their facts before making such disrespectful remarks. Marfan / Loeys Dietz Syndrome needs more awareness so that funding can be raised to research the condition and move forward with helping suffers, what it doesn’t need is to be laughed at. I am disgusted !
Hello Vicky. Thank you for reading. Your story is very close to my own, which was why I felt moved to write something. All the best to you, V.
I took offense to it. I don’t like Will Ferrell and that just made it worse. I have Marfans, my sons have Marfans and 3 out of 6 that we know of so far. That was plain old hateful and I’m about to break that DVD for the comment alone !! How dare you!!!!!!!
Pardon but that’s 3 out of 6 of my grandchildren!! So riled about it I can’t think straight. This is not a pun to be used in a comedy!!! I’m sure not laughing and I’m sure the rest of us suffering from this condition aren’t laughing either!!!!