Wow – what a difference a day makes! Yesterday our community was outraged by a careless remark made on the ABC television drama, “Secrets and Lies” which aired on Sunday, March 15th. I, along with thousands of others, voiced my concern in a variety of ways – social media, emails, and good old fashioned talking. I wanted to alert as many folks as possible about this travesty so I started with Facebook. Say what you want about social media but if you have an issue that needs attention – you just can’t beat it! I was touched and honored by the show of support I received from friends and family. My message was “liked,” “shared,” and commented on which made me feel I had done the right thing by speaking up and showed that others were also outraged. Here is what I posted on my own Facebook page as well as the Facebook page associated with the TV show:
“I am disgusted and horrified with ABC! Last night they aired a show called “Secrets and Lies.” During the show a comment was made – “Hemophilia is a nasty by-product of incest.” Great job ABC for creating an environment for 20,000 Americans (many of which are children) to be bullied and ridiculed for an incurable medical condition. So is it OK to spew inaccurate data in the name of ratings? Not in my house!! I am honoring Hemophilia Awareness month by banning all ABC programming for the month of March and will continue until a formal apology to my community is received. So proud to be part of a community where we will not allow this behavior to go unchecked! Anyone out there have a contact with the local ABC Affiliate? I have some misconceptions to clear up!”
Today I have a gigantic smile on my face thanks to ABC! I have two teenaged sons with severe hemophilia and I am the Executive Director for our local organization, Texas Central Hemophilia Association. I struggle every March to come up with a great big idea to generate awareness both personally and professionally about bleeding disorders in recognition of Hemophilia Awareness Month. One year we had a great article published in the Dallas Morning News about our family and living with a bleeding disorder. We’ve attended events, written letters, and have met with Legislators at the state and national level, all in the name of raising awareness. I had no idea that a careless, hurtful remark could generate so much awareness!
I was fascinated to read some of the posts on social media – so many misconceptions and so much anger on the surface. Then I started to dig a bit deeper and here is what I discovered underneath all the spewing: our community has not lost its ability to rally for a cause, stand up for what we believe in, and speak up for those who cannot speak for themselves.
I am a mom, an activist, and an advocate – all are synonymous to me. When our oldest son was born and diagnosed on day two of his life, I literally did not think I could handle all the responsibility. My husband wisely said to me, “You have no choice; we are all he has” – that was my first realization of what advocacy is all about. My kids are now at an age where they can and do speak up for themselves with strong convictions rooted in both emotion and reason. I know this to be true, yet I still got riled up. My fear was that all the hard work my husband and I have put in to these two humans over the years could be negatively impacted by the heinous comment made on a TV show. Would they be afraid of what their friends would say to them? Would they be afraid to talk about hemophilia and generate awareness because someone might think they were a product of incest? What about all those new families just being diagnosed – what uphill battles will they face resulting from this inaccurate reference? Now, explaining that we won’t bleed out from a paper cut doesn’t seem so outrageous, right?!
I saw much negativity yesterday. There were many posts that basically said, “What’s the big deal?” I took comfort in knowing that much of this comes from ignorance and my hope for these individuals is that when they or a family member are in need, they have a community like ours to rally on their behalf, advocate for the truth, and stop at nothing for what they believe in. I heard stories about men being embarrassed at work because they were questioned about this topic and about parents who were afraid to send their kids to school because they might be ridiculed. There was talk about trying to profit from this experience by expecting donations to national and local organizations. I personally do not think that is appropriate. However, I do think we deserve a public apology and some PSA time on ABC stations to clear up public misconceptions about bleeding disorders – misconceptions that were caused by ABC’s carelessness.
Now here is why I am smiling: Advocacy is my passion and helping individuals find their voice is something that brings me joy. ABC gave us a great platform to advocate on behalf of our community. We cleared up misconceptions, we stood up for ourselves, and we showed the world how strong we are as an organized force. We flexed our advocacy muscles yesterday and I am so proud! For our old guard – those who have battled with hemophilia, HIV and hepatitis C – and who have done amazing work – I hope we showed you that we are still a strong and powerful force – you have taught us well. For all the new families, I hope we gave you courage to get involved!
Those same advocacy muscles are used when we speak with medical professionals, schools, and legislators about our issues, concerns, and needs. Yesterday we learned that advocacy can happen at the kitchen table over our laptops, with that cup of coffee in hand. It is a safe environment to learn. Now, I challenge you to get involved with local and state advocacy efforts. Contact your local and national organizations to find out how you can get more involved. I was so grateful to both HFA and NHF for “having our backs” and taking a strong stand on this issue.
Complacency is the greatest threat to our community. I have been concerned that folks are kicking back and taking things in stride because all is quiet on the hemophilia front. Now more than ever we need to engage, as much change is looming on the horizon. It is great to see that we can quickly mobilize when needed!
I am not sure if we will get our public apology from ABC or that PSA time but I do have to say “Thanks ABC” for giving our community a platform to showcase our most excellent collective voices. You helped us raise awareness and we were even trending for a while! How cool is that! As a community, we are all we have and we owe it to each other to stay engaged. Go forth Hemo peeps and keep changing the world!
Brendan Hayes lives with her husband Dallas, sons, Weston (19), and Garrett (16), in Texas. Brendan is the Executive Director of Texas Central Hemophilia Association and Coalition Coordinator for the Texas Bleeding Disorders Coalition.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers