If you’re a new reader here, I am a hemophiliac. Hemophilia is a hereditary genetic disorder that impairs the body’s ability to control blood clotting, which is used to stop bleeding when a blood vessel is broken. I lived though the hemocaust – a period of time during the 80s and 90s where the medication hemophiliacs receive was tainted with HIV and 10,000 of my brothers and sisters were murdered. I know what it feels like to be on the receiving end of misinformation and hate because of my hemophilia.
A few months ago, the bleeding disorder community, myself included, was attacked by the ABC series Secrets and Lies when Michael Beach’s character stated, “Turns out, hemophilia is a nasty byproduct of incest.”
This mis-information, no, this LIE really brought the bleeding disorder community together. We all rallied together demanding ABC apologize for perpetuating such a harmful lie. It was amazing to see the community come together.
When I wrote about ABC’s blunder, I stated, “Media is the most powerful means to influence the masses, providing their audience with a packaged message” and “Misinformation isn’t entertainment. It affects those beyond the sound stage. And in this day and age, people unfortunately don’t educate themselves before believing what they hear through the media, whether it is television, radio or news feeds.”
While I still believe what I wrote, I find the current uproar in the bleeding disorder community ridiculous. What is the cause of the uproar? It seems Ryan Murphy, producer of American Horror Story: Hotel, in an August 26, 2015 interview with Entertainment Weekly, refers to the vampirism of a new character—portrayed by Lady Gaga—as “It’s not vampires. (emphasis added by Jay Bishop) I prefer the term ‘ancient blood virus.’” He adds “It’s really a form of hemophilia in a way. There’s no capes and fangs.”
I write about anything that I want, and hurting a reader’s feelings is inevitable. But anyone who has an audience of any size knows that any statement of opinion — no matter the subject, no matter how its worded — will stir up anger and acrimony. In fact, it doesn’t have to be a statement at all. I’ve offended people with memes that I have shared on Facebook! And here’s where I prove my point: this current outrage over a show that HAS NOT EVEN PREMIERED yet and the irresponsible actions of Val Bias, CEO of the National Hemophilia Foundation, who misquoted Mr. Murphy, is mind-boggling ridiculous! Sorry, Mr. Bias, but the only person who is “completely inaccurate” is you. All you’ve managed to do is incite the bleeding disorder community into a frenzy over your untrue statements, completely negating the bond we built during the Secrets and Lies fiasco.
Why are we in this permanent state of outrage? Why are we constantly dismayed, disgruntled and disturbed by every little thing? So much so, we’re LOOKING for things to be offended about. There are REAL outrages happening in the bleeding disorder community. There are actual travesties and atrocities occurring on the planet, ones in which anger would be an appropriate response.
I know it’s much easier for me to tell you to stop taking things so personally than it is to actually stop taking things so personally. So I’ll end with this: Vampires are NOT real. Nobody in their right mind is going to read Murphy’s interview and believe vampirism is a form of hemophilia! Why? Because he said, “It’s not vampires. I prefer the term ‘ancient blood virus.’”
Honestly, I find this outrage to be beyond ridiculous. Let’s stop trying to raise awareness about bleeding disorders by getting offended over nothing. Instead, let’s raise awareness about children with bleeding disorders who are not getting proper treatment.
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