Global Genes | RARE Project : Welcome to Global Genes! We are so excited to see you later this month at the Global Genes Gala. You’ve been in dozens of TV shows, TV movies and on the big screen—but lately, you’ve also been very involved in advocacy for rare disease. What’s the inspiration behind wanting to focus on this specific cause?
Eileen Grubba: Thank you! My inspiration has always come from not wanting to see anyone, especially innocent children, suffer the way I suffered for having been a child with a rare illness. It is challenging enough to face the physical pain and scariness of hospitals, needles, tests and surgeries. But when the greatest challenge of your life is NOT a life threatening illness, but rather the cruel isolation and humiliation experienced at the hands of other people who fear your physical differences, it is time for a reeducating of people who have not experienced life threatening illness. My passion comes from wanting to teach the world about acceptance and RESPECT for anyone who has struggled through a life-changing and body-altering illness. My hope is to shine a great light on the strengths that come with these types of adversity, so people can see the survivor in a much more positive and welcoming light.
GG: How have your own personal experiences with hospitalization, medication and battling a disease as a young child impacted the type of roles you’ve taken as an actress?
EG: My life experience has been very rich, extreme and different than most people, therefore I see the world a lot differently. It causes me to make choices that surprise people. My life experience dictates that I find a way to turn even the most dire circumstances around, and often my characters do that. I laugh at things most people would never laugh at. In addition, I have great empathy for anyone’s suffering, so I can relate to a character’s conflicts, perhaps in a deeper way than creators or writers may have imagined possible. There are multiple times where the audience in a theater, or the members of The Actors Studio, were left stunned, in tears, or laughing for emotional relief, surprised at how much they personally felt from the performance where extreme life experience was used to light up the passion in the piece. My experiences with illness and battling for my life have made me want to help people understand the depth of pain that lives in most people who have overcome great trials, even when they never reveal it. My life experience also compels me choose and fight for projects that will enlighten humanity, encouraging a greater appreciation of the strength and spirit that only come through adversity.
GG: What are some issues within the rare disease community that you feel need our attention. Is there a specific area you’ll be focusing your advocacy efforts on?
Yes! My focus is on encouraging the entertainment industry, and the advertising world, to INCLUDE people with physical challenges and differences REGULARLY in their commercials, TV shows and films. Allowing them to be seen as a normal part of society. We fear what we do not know. It is FEAR that causes most people to isolate those with disabilities and physical challenges. It is also this fear, coupled with an animalistic need to conquer “the weak,” that causes most bullying that happens to kids with disabilities, and continues on in the adult work world. We as a society cannot continue to punish people for their differences, especially when they have already suffered enough just trying to survive. These industries have the power to enlighten and elevate humanity with their stories and advertisements. If we can include more people with challenges in commercial media, they will become more accepted, more common, a more normal part of the human race. If we would show them in a positive light, and appreciate what they have come through, we would probably eradicate most bullying.
We would also welcome a new workforce into society: people with great determination, endurance, enthusiasm, passion, problem solvers, creative thinkers with different visions, who could change the world if we let them in! By excluding these people from society and expecting them to live silently, in the shadows, on disability, and in poverty, we are cutting off a major life force that could infuse great insight and ingenuity into all our lives. We could possibly be cutting off the answers to all our problems by excluding the people most experienced in survival and adaptability! Through entertainment and advertising, we can change this and finally have ALL inclusive diversity, which also takes the pressure off of EVERYONE to be “perfect.” What a lovely world this would be!
GG: Can you tell us a bit about your project “Sleeping with the Bear?”
We made “Sleeping With The Bear” to show audiences what it looks like when a person with a REAL physical challenge, inhabits a character with a similar challenge. We wanted to show the depth of pain one feels, behind closed doors, when they are facing devastating news, from the point of view of someone who HAS faced such news. The kind of pain we never really feel comfortable sharing with others. We also made it to take the audience through the journey of being in your worst emotional place, and then show how you can turn it around when you take the focus off of your problem, and turn your energy and mind toward helping someone else. We hoped to show the entertainment world the emotional depth and passion that comes when you hire an actor with extreme life experience to inhabit a challenging role.
In the moment that this film was conceived, I had just been diagnosed with a rare genetic syndrome that causes most cancers and was very close to losing my SAG health insurance again because of an industry that won’t even allow most actors with challenges, even as simple as a limp, to audition for lead roles. After 20 plus years of training and hard work, we decided, we’ll make a film ourselves that shows the work of ONE actor with a physical difference. It was welcomed in festivals around the world, and we received a Best Actress nomination.
Here is the sizzle reel one of our Producers created to inspire people to support our project and our cause:
GG: Can you tell us a bit more about what sort of projects you’re working on in the next couple of months?
We just wrapped a movie that shot in The Czech Republic and Switzerland, working with a very talented young writer/director/producer, Robert Kouba. At 20 years old, he is already making an incredible impact on our industry. He has a brilliant mind and sees the beauty in the differences of people, and how they all fit in society and in his films. He is never afraid of a challenge, rather he is inspired by them. I am very excited to keep working with this young man, as I know he sees the world with a humanity and understanding that will make a difference in the imagination of his audiences.
Next, I’ll be working on a film called “Broken Bones, Shattered Dreams” that takes a look at bullying and its effect on children and adults, and how we can change this dynamic.
We’re also still working hard on encouraging the major networks to include people with physical differences in all their shows, even when the storyline is not about disability. The cable networks are doing a beautiful job with this, and the shows that are most INCLUSIVE are actually quickly becoming the highest rated and awarded series. Sons Of Anarchy, Breaking Bad, Hung and a few others. We are hoping to see casting offices begin to REALLY include, and allow people with challenges the opportunities to read for LEAD roles on a regular basis, so they will have the experience to excel in the audition rooms, and the opportunity to book lead roles, just like any other trained actor.
I’m also writing several scripts that include differences in lead roles. I was recently hired to write a few scripts that deal with strong women, and fierce determination in the face of adversity, so I always write in a character that has a physical difference, somewhere, and so far, the creative producers are lit up by that. Because of my life experience, I can write truthful depth for these characters, and they take on my level passion for their causes which creates exciting, strong female characters.
GG: How did you feel about attending the Global Genes Gala? Were you able to meet other advocates like yourself? How did you feel speaking in front of that room and telling your story?
EG: The gala was an inspiring event. A week later, I am still moved by it. The energy in the room was so positive, welcoming and supportive. It was awesome to be in a huge room of people who I KNOW will not dismiss me because they fear my challenges and differences. What a gift! I was able to share my story to inspire hope for parents and kids with challenges, and have it celebrated, rather than feared. I met so many incredible, beautiful, loving, supportive, positive people and other advocates who also inspired me. There was no ego in that room, no show. It was all about love, support, acceptance and changing the world to make it a better place for people dealing with extreme adversity.
It was a life changing event. Afterwards, our other celebrity presenter called and thanked me. He said, “I turned on the Emmy’s tonight, and couldn’t even watch it, after seeing an awards event that REALLY mattered and is making a difference. It all seemed so trivial and shallow by comparison.” I am with him on that. The Tribute To Champions of Hope was an awards event that is game changing. THIS Gala/Awards event should be on National TV, it will move FAR more people than the current televised award events, and an event like THIS going GLOBAL, would change the world!