INCLUSION MATTERS: AN EXCLUSIVE INTERVIEW WITH EILEEN GRUBBA
Eileen Grubba is a Hollywood Actress best known for her ‘edgy’ guest roles in shows such as Sons of Anarchy, Bones, Game of Silence, Hung, Cold Case, Criminal Minds, Fear of the Walking Dead, to name but a few. Eileen is also an #ALLin Ambassador.
She is a vociferous voice for inclusiveness and diversity in the American industry. She was also one of the judges in our “A World Of Unfairness” photographic competition. She flew in especially from LA to be at our winner’s ceremony which was hosted for us by Professor Stephen Hawking in his Cambridge Study.
Q) Eileen, a few words about your own experience with disability
I was paralysed from the waist down when I was less than five years old, by a vaccine we had for school. The live virus attacked my spinal cord, nearly killing me, and left me with a C1-C4 permanent spinal cord injury. They told my parents I would not live. Then they said, “She will never walk again.” For many years, they did not know if it was caused by the Oral Polio vaccine, or if it was Guillain Barre Syndrome. Throughout my life, doctors were concerned about the possibility of Post-Polio Syndrome.
We finally got a real diagnosis just a few years ago from the Post Polio Syndrome experts at UCLA Neurology. They said, “Polio doesn’t move this way.” They did an extensive spine study which revealed that it was indeed a spinal cord injury as they could see the scarring from C1-C4. From what I understand, C1-C2 spinal cord injuries are the most deadly with the least chance of recovery, so it really was a miracle that I survived and figured out how to walk again.
Throughout my life, I have had many, many surgeries to rebuild my left foot and ankle. I wore an AFO leg brace for nearly 20 years. I still have many of the same challenges as a spinal cord injury patient, including neuropathy, and have chronic bone pain. In addition, all the years of x-rays may have caused the thyroid cancer I had in my early 30’s.
Eileen Grubba in ‘Sons of Anarchy’
Q. Have your disabilities held back your career?
Yes, immensely. My movement, limp, was a confirmed problem for many people through the years. It was less of an issue in Atlanta and New York City, although there were a few instances of discrimination at the hands of agents in NYC. I was also up for some wonderful Broadway musicals in my 20’s in NYC. My singing voice would get me quite far, but once we got to movement, I was out. That always broke my heart. I loved doing musicals in Atlanta and they always found creative, fun ways to work around my limitations, but NY just said NO.
My limp became a big issue in Los Angeles, as they are so inundated with beautiful people from all over the world, that if there is any reason they can eliminate you, they will. My limp, and brace, gave them an easy reason. I was an ‘imperfect’ female. A deadly combination for a career in entertainment where the female is still being held to to some unrealistic model of PERFECTION, which I strongly believe is a disservice to ALL women. The illusion of perfection harms ALL women, everywhere.
Eileen Grubba with Barbara Bain & Sondra Currie. A shot from the film TAKE MY HAND which Eileen wrote and starred in.
Q) Were the attitudes hurtful?
Yes, quite painful at times. I have been mocked, literally, in public, by other actors, and even by a very well known acting teacher, who actually called me a ‘Freak of Nature’ in front of a packed acting class. She treated me accordingly until I finally quit her class and auditioned for the Actors Studio. With the very work and life experience she belittled, I went all the way to finalist on my first audition at the world-renowned Actors Studio.
I’ve very recently had several managers come after me for my career, resume etc .. and express a desire to sign me, but then changed their minds as soon as they found out I had a limp. One said it was “just going to be too hard”. I literally would have been her biggest client, by a landslide but she was too afraid of my difference. The big commercial agents won’t take me on either. When you have a disability, it is RARE when someone in this industry will fight for you. It’s like they’re afraid to be aligned with an unwanted person. But the more credits I amass, the easier it is for people to get on board.
Through the years we won so many jobs, then lost them when they noticed my limp. Many offices closed their doors when they found out I had a walking challenge, and some of those doors remain closed to this day. For many of my best (youthful, pretty) years, I only had two to three auditions a year, no matter how hard I worked, when many of my friends were regularly auditioning several times a week, or even per day.
For many years, it was more common than not, that casting offices would make disapproving faces when I walked into their rooms. That “withering” look does not make you feel welcome which creates an immediate disadvantage for the PWD community. It’s hard to remain confident when you know they are not rooting for you, and only seeing what they think is “wrong” with you. Several times they called my agent or managers and made an issue of it, or told other people that they can’t bring me in for “normal roles”, and that news often got back to me.
But things are finally changing. Thank God for the efforts of people like Russell Boast (President of the ‘Casting Society of America’) and his diversity committee. They are rapidly implementing industry-wide inclusion initiatives, working hard to create equal opportunity for ALL differences. The mindset is changing and many accomplished casting directors are getting on board. They are bringing us in, speaking up for us, fighting for us.
Russell Boast – President of ‘Casting Society of America’
I am starting to feel some respect when I come into those rooms. Maybe because I haven’t quit, or because I am gaining a voice. Maybe because society is demanding inclusion and more accurate representation. Maybe my work is finally being seen, instead of my walk.
Eileen Grubba in Bones
Q) Did you ever try to hide your disability?
Yes, for years I had to hide it if I ever wanted to work. At one point, probably 15 years ago, I tried to show the brace and honor my difference, but it closed the doors to those offices. When I hid it, I would get work. So for many years, I worked hard to to hide it under long skirts, and distracting people when I walked into a room. However, that really made it more difficult to focus on the work. Yet, I knew if they saw it, my work would not matter. Hiding it became crucial, and it’s how I snuck through and got some of my best jobs. Once I got on set, I was often welcomed by the creatives on the shows, and many times my roles were increased. Several times, my roles were even expanding to series regular, but both times, the shows were cancelled. So close!
It is such a great JOY when I do NOT have to hide who I am. I’m grateful to creators and showrunners like Brad Falchuk, Ryan Murphy, David Hudgins, Carol Mendelsohn, Ian Toynton, Ian Brennan, Dmitry Lipkin, Colette Burson, Sharon Liese and Kurt Sutter who made it possible for me to start working without fear of my limp being seen.
Q) So are things finally changing?
Things are definitely opening up, but we have a long way to go. In smaller roles, the industry is far more open. But to this day in Los Angeles, 27 years into the game, I am still undervalued and almost NEVER allowed to audition for series regular roles. On the rare occasion there IS a character with a limp, they want a “name” for those coveted disabled roles. Once when there was a series lead for a new cable series that was SO CLOSE TO ME, you would think it was written for me. I fought hard and had to go over everyone’s head to get that audition. Some of my Actors Studio friends, Catlin Adams and Katherine Cortez called the executives and got me in. The casting director was so surprised by my work, she said, “Wow! You’re a real actress. Why have I never seen you before?”. However, the network decided that without a ‘name’ for that role they would not do the show. Well, good luck finding an actress who can walk with a believable limp for many seasons. It’s like asking me to play Asian or Latina. Any audience can CLEARLY see when it’s not a real disability.
In addition, they can make a ‘name’ out of anyone in our industry, they know that, and imagine the PR story they would have had! They are missing powerful representations that come from the depth of pain and the infectious humor and joy that shines through someone who has fought hard to BE HERE.
I often wonder what would have happened if they did not take away those jobs and I had those breaks early on. My entire life would have been different, and I would have made such a great impact on our world by now. It breaks my heart when I think about it, but I haven’t given up. Giving up is not in my nature.
I am writing my own shows and looking for other ways to get through the Hollywood machine. I will find a way!” I’ve started writing shows for women who are already names. My characters see things differently and fight the way I do, so they are unique, resourceful and unstoppable. I’ve also made some good, creative allies, and I am slowly finding the people with the courage to create change. The #MeToo, #Its Time #OscarsSoWhite and #BlackLivesMatter movements have made it possible for the PWD community to be finally heard, too. Diversity means equal inclusion for all, and we as a society, or industry, can no longer deny that ALL human beings deserve EQUAL opportunity. Excluding or suppressing any community hurts us all.
The disability community is the only community that includes ALL differences. No matter your age, race, gender, religion, nationality, social status, rich or poor .. anyone can join the disabled community at any time, and most will join us at some point before they leave this world. So shouldn’t we all be working to make our world more accepting to those who went through the battles sooner?
Q) What do we lose by excluding disabled people?
Truth. Reality. Depth. Wisdom. Compassion. Humanity. Emotional strength and physical endurance like we have never seen on screen. Inspiration that is REAL and empowering for all who witness it. A better understanding of what a real challenge looks like, and how to handle it. We lose our game changers. Our problem solvers. We lose great imagination. Many, many, many wonderful, engaging, unique stories. Creative heights we have barely scratched the surface of. True diversity. And …. we’re losing 20% of our audiences!
Professor Stephen Hawking
Q) Who are the disabled people you most admire – and who have inspired you?
Meeting Professor Stephen Hawking was one of the highlights of my life. I was able to sit down with him, hold his hand, and explain to him the challenges we are facing in entertainment, and what we are doing to create authentic representation and appreciation for people living with disabilities.
Wilma Rudolph had a childhood like mine, fighting for her life, braces on her legs, and ended up being the first woman to win three Olympic Gold Medals for running.
Stevie Wonder is a musical genius. Beethoven wrote his best works when he was deaf. Einstein had a learning disability. Professor Stephen Hawking changed the world of science. Franklin D Roosevelt was the longest serving U.S. president in history. Marlee Matlin, Geri Jewel, Peter Dinklage and Christopher Reeves have all contributed to positive depictions of disability in entertainment. Can you imagine if we had kept them all out of society? In most cases, their disabilities literally created their greatest accomplishments.
Q) Disability Talk asked you to spearhead the #ALLin Movement in the states. Do you think it’s as important as #MeToo?
Yes, I feel this movement is critical to the advancement of all humanity, really. We have been leaving out our game changers: those perhaps most adept at overcoming and thriving in the face of challenge and adversity. They could be our best teachers, leaders and problem solvers. Most of them do not crack under pressure, they excel in a crisis. We need their minds, their spirits and their stories to help ALL of us to find our way through the challenges of life. Every human being has a purpose, and we all add to the complex fabric of humanity. We are doing a great disservice to ALL when we leave out the most skilled at survival in the face of adversity. These are our outliers! Bring them into the game. #ItsTime. It’s #ALLin.
Q) How can we all change our perceptions of disability and disabled people?
By telling the TRUTH and sharing authentic stories that show the reality of people like me. There is no weakness here. Regardless of physical challenges. Most of the people I know, living with disabilities, are unbelievably strong. Survivors who are resilient, creative, and almost invincible, because they have had to be all their lives. Not only to survive and endure their own challenges, but even more so to endure and survive the suppression, abuse and bias of the majority of society. Most of them also have an edge that is exciting and a great sense of humor! Again, because they have had to survive.
We have been pushing for inclusion and opportunity in entertainment, advertising, and ALL media because if we had truthful representation in film, TV and commercials, society would become more comfortable and less fearful of this very diverse and exquisite community. We fear what we do not know and see on a regular basis. Usually on the other side of fear is great strength, freedom and JOY. We can’t get there without facing our fears.
Q) Eileen, you have been very brave and honest.
Thank you. We have to be brave and honest if we want to make a difference. I’m still here! And will continue fighting to make sure the world begins to see the value that comes with disability. Thank you for sharing my story.
Eileen will be Guest Starring on two new TV shows this year. The Politician on Netflix, and Watchmen on HBO.
Please stay tuned on her IMDb page for more information and air dates.
Show us. IncludeUs. #ItsTime #ALLin