This month’s Guest Blogger is Greg Kamp, Director of Marketing and Communications at Mary Cariola Center. Greg is a marketing strategist, public relations expert and excels in crisis communication management.
I have had a career of privilege, quite literally. I have been lucky to work with and interview celebrities, athletes, political figures and more. In doing so, the words from my journalism professor ring in my ear; “remain objective, ask fair questions, allow them to respond, and never, never get starstruck.” I have followed those words of wisdom all my life. And then came one day in Dallas. I was objective. I asked fair questions. I allowed my subject to respond. But I became more than starstruck. I became inspired, in awe and came out of the interview a better person.
My subject was none other than academy award winning actor Marlee Matlin. Youngest actor to win the award just before her 20th birthday. She left the awards show and went directly into drug rehab. She has been deaf since she was 18 months of age. Today, she is clean, married with children and still acting in award winning films/television and someone who has touched my very soul.
I met her in Dallas, the site of the Public Relations Society of America (PRSA) annual conference and where Matlin spoke. She is an amazing person, a wonderful actress and nothing holds her back.
She is a candid diversity and inclusion champion and activist for people with all disabilities. She continued to brake barriers when she starred on ABC’s Dancing with the Stars, has penned three novels for children and written a New York Times Best-Selling autobiography ‘I’ll Scream Later.’ She has aptly stated “The only thing I can’t do is hear.” Matlin added, “I am only living with a disability if I choose to let people treat me as if I have a disability.” But sometimes that is not her decision.
Academy Award winning actress and activist Marlee Matlin was the keynote speaker at the annual conference of the Public Relations Society of America in November. (Photo Courtesy of PRSA)
Another “academy award connection” for Matlin came in 2021 when she starred in the best movie of the year, CODA, a movie she almost refused to star in. CODA follows a hearing teenager who is a child of deaf parents and has a deaf brother. Matlin was told that they were looking to cast big name actors to co-star with her. She put her foot down, “loudly” she says and threatened to quit the movie if they did not hire other deaf actors for the roles. Her persistence changed minds, reluctantly, and the film went on to win an academy award.
There is an estimated one billion plus persons with disabilities in the world—or 16% of the global population. Demographic studies show persons with disabilities are disproportionately represented in the media (TV, Film). For the longest time, hearing actors have been playing deaf people or actors who are not disabled have been playing disabled people,” says Matlin. “And it’s just not an excuse you can get away with any longer. When I heard they wanted a big, “box office” name to play my husband in CODA, I said ‘that’s not authentic – and if that’s the route you’re going to go, I’m going to respectfully decline the role.'”
She goes on to explain that there are plenty of wonderful and authentic deaf and disabled actors who need to play these parts. “We can’t perpetuate this stereotype that disability or deafness is a costume that an actor can put on and take off at the end of the day. It takes patience on the part of decision-makers who are not deaf or disabled – and it takes commitment.”
Matlin speaks with passion, drive and backs it up with a deep commitment to change perceptions and in fact, the world. She points out there is some work to do on the part of disabled people too. Representation extends beyond the screen, as disabled people must be able to see themselves in any kind of role or profession that interests them—some have been told they “Can’t.”
Matlin says "I think it’s crucial for people like myself, deaf adults, to visit deaf schools or schools that have deaf students, people in wheelchairs or other disabilities need to demonstrate who we are and how successful we are – whether we are actors, teachers, nurses, doctors or lawyers – or whatever may represent the possibilities of life for them.” Audiences are more receptive to the idea of diversity and authenticity in film – a trend that she hopes will carry through to everyday life.
Think about this, disability is the only minority group anyone can join at any time. Let that sink in. At any moment, any one of us can go through life-changing trauma or disease. Eighty percent of the disabled population were not born with a disability.
This woman, mother, wife, actress, producer, and advocate has become a true inspiration to me. I’ve had a unique combination of having been a journalist and now working in the field of intellectual developmental disabilities and medical complexities. I have considered myself an advocate and a disabilities storyteller. Marlee Matlin showed me that I need to be more than an advocate, more than an activist for disability rights. I need to be what she calls a “storytelling agent of change” and must tell the disability story to those who will listen and even to those who will not.
Spending my entire career in the communications business, I know I can expand my storytelling and dig even deeper to be this “agent of change.” It is a daunting task. It makes me ask, “can I do this?” And then I think about a 19-year-old deaf woman who made a movie, won an academy award and is now one of the biggest champions of inclusion in this country and beyond.
As my storytelling days continue, I approach this task with passion and responsibility. There are over 500 students and residents at the Mary Cariola Center in Rochester, New York. It’s a place, as we say, that “transforms the lives of people with disabilities,” and it’s where I tell my stories. But they are not my stories. They are the stories of families with children with intellectual developmental disabilities and medical complexities. They are the stories of the resolute staff who teach, care for, and commit their careers to those we serve.
There’s an old saying in the journalism business, “there are a million stories in the big city.” Well, there are at thousands of stories to be told about Mary Cariola. My confession is that before my time with Matlin, I knew I had to tell these stories. Now, post-Matlin if you will, it is by obligation, my responsibility to get these stories out. Taking the challenge from Matlin to be a storytelling agent of change, it is my profound duty to tell the stories and be a champion for the marginalized population of disabled children that I see each day.
I cannot do it alone. As a communications professional, simply put, I am a storyteller. It’s what I do. Now IS the time for each of us to tell the stories, open the eyes of those blind to people with disabilities and speak for those who are non-verbal. It’s a challenge that Matlin threw down and I am picking it up. The question is, will you?
