Marlee Matlin’s life in her own words: A Deaf trailblazer opens up

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The actress reminisces about her career and personal experiences, which involved struggles with addiction and abuse, but also the happiness of being a grandmother.

Appoint a Deaf president when a hearing woman was named, which greatly upset the students. (Deaf advocate Nyle DiMarco helped direct a documentary about this incident that is also being shown at this year's Sundance Film Festival.) However, when Matlin spoke instead of signing the names of the nominees at the 1987 Oscars, she received criticism from the Deaf community.

She expressed her frustration about having to pay for her interpreter to help with her treatment.

Directed by Deaf filmmaker Shoshannah Stern, this poignant, insightful documentary gives a truthful portrayal of Sandra Bullock's colleague, sharing her professional journey, introducing her family – her siblings, husband, kids, and grandchild – and recounting how she navigated life. She shares about her rebellious teenage years, the boredom and isolation she felt from being cut off, blocked off, dismissed, and ignored, and now, feeling more powerful, but acknowledging there's more she wants to achieve.

Author's Note: When referring to individuals who identify with the Deaf community and their culture, we use the term "Capital D Deaf." This term denotes a distinctive political and cultural identity. In contrast, the term "little d deaf" is used to describe individuals who perceive their hearing impairment as a medical or personal issue, not necessarily tied to a specific culture or community.

The quote from the film that resonated with me the most is: "You are more than what people think you are." Can you tell me more about what inspired you to make this film now?

For my entire career in the entertainment industry and in the public eye, I've always been focused on narrating the story of the film, play, or TV show I was working on. People would ask me about the project, and I'd find myself talking about my personal life. Writing my memoir gave me the opportunity to tell my story in my own words. Working with director Shoshannah Stern on my story was a great fit, as she comes from a similar background and perspective. Taking my entire life and condensing it into a 90-minute story was a challenging but exciting process. I was confident that Shoshannah would be able to present it in a clear and engaging way. Over the years, I've encountered many people with various perceptions of who I am as a Deaf person, and not all of them are accurate. Some people thought they knew me, but they had preconceived notions. I wanted to clarify things and give people a deeper understanding of why I am who I am today.

, Crash Course.

I love the scene in the movie where someone says it's a "rite of passage" for every Deaf actress to play the role of Sarah in "Children of a Lesser God"; the comment implies that there's a very limited number of roles for Deaf actresses. There's also a comment that the film is "about them," meaning the hearing world, whereas it's "not us," meaning Deaf people. Do you feel you've gained more control over your career compared to when you were just starting out?

I didn’t know any better at the [start of my career]. Work is work. I had bills to pay. I thought I belonged in Hollywood, so whatever they offered me, I thought, “I’ll take it!” That was just the way it was. I was a working actor, and I felt lucky and grateful that I was getting work. And I can’t say I didn’t enjoy it. I did enjoy the work I did — don’t get me wrong — but I didn’t think much then about how it was written, or how I was portrayed. At the end of the day, every role I did was from the perspective of a hearing person, and not a Deaf person. It was almost as if I literally didn’t have a voice to say to the writer, or producer, or director, “Why don’t we take a time out?” I didn’t think about that until “CODA.” No one asked me. As people who are Deaf, we are always patronized. We have a Deaf actor; we check that box. Things are different now, as you can see.

I appreciate the way you highlight in the movie that you wouldn't work on "CODA" if the other actors weren't Deaf. Can you discuss your commitment to inclusivity in your career and whether you often found yourself being the only Deaf person on a film set? You're currently making a deliberate effort to change that.

Absolutely. I have always been the one working as a Deaf person. Deaf actors said to me, "How do you get agency? How do you get this, and we don’t get this? Can you help me get an agent, or write, or act?" Why am I the only person? I was the one getting everything but no one else was getting anything. Why is no one else being included? I was always the only Deaf person, and people started to resent that I was the only one. My desire today is to spread the wealth and to help other Deaf actors get the screen roles that I do to act, or write, and direct. With “CODA,” and the fact that they were thinking of putting a hearing actor in a Deaf role — because box office — it clicked for me to say, “You can’t do this, or go backward and do what’s been done and accepted as “normal.’ It wouldn’t work, period.” It was a matter of me just getting tired. I surprised myself when I said I would walk away [from “CODA” if they hired a hearing actor].

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I had to figure it out for myself! I had to navigate and find ways to serve me, unfortunately. I had to answer questions no one answered for me. Why am I doing this? Why am I stubborn? Why am I doing drugs? I managed to get through it all.

I can say I had a wonderful childhood. I didn't come from a dysfunctional home, and I had access to the best things in life, but despite all that, I felt like I was missing out on one important thing: open and honest communication. Maybe I set my expectations too high, but I'm the kind of person who strives for more than what others settle for. I don't want "just fine." That's just who I am.

I take note of your dedication to advocacy and representation for the Deaf community and the challenges you've faced recently at the Oscars when you presented the nominees without signing their names. Your actions have sparked both admiration and criticism from the public. Could you tell me more about how the community's reception of you has evolved over time and how your efforts to advocate for the Deaf community have impacted your own perspective?

I haven't gained universal acceptance yet. I still have a few critics. I still have concerns about how I'm perceived by the Deaf community. Generally, I have the utmost respect for the most prominent members of the [Deaf] community. I still feel pressure and am accountable to the community that outright rejected me and didn't show me the respect that I thought I deserved. There were people I admired. It's all about how and what kind of upbringing we had. Different people who are Deaf have different perspectives on the community, depending on whether they were raised in deaf households or hearing households. As I spoke at the Oscars, I was completely caught off guard. No one told me why it was not okay to just speak, even though I took the time to explain this is what I was doing, this is how I was raised, and this is what I was used to doing. It wasn't until 10 years ago that I learned the reason why. People still approach me and say, "I used to really dislike you, but you're okay." Whatever.

I wanted to respond, "I never liked Marlee Matlin or her movies." I thought, how does that relate to my experience of evacuating and discussing my film? I was about to say, "You don't have to like me or my movies, but why do you have to target me while I'm talking about something personal, like evacuating my home?" That really upset me. There are still plenty of people who don't like me, and I hope my film opens people's minds and shows them how I feel when they say negative things about me. To those who still don't want to understand where I come from, I'm not asking you to like me, but I'd ask you to take 90 minutes to watch the film and try to understand me better and learn more about me.

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Talking about this is emotionally relieving for me. It helps me process my thoughts. I also think about other women and men who are going through similar experiences, especially those in the Deaf community who might not have access to support. When I was in that situation, I didn't even know I could ask for help. The film barely shows a fraction [holds up the same amount] of what I went through, it's shocking. I still can't understand that back then, I lived with actor William Hurt and would scream frequently every day and night, yet none of my neighbors ever reported it to the police. To this day, it puzzles me.

I was thrilled to have spent two years living at Henry Winkler's home, and what's more, we even had my wedding ceremony in his backyard. I'd love to share some thoughts on my friendship with him – he was a truly influential and supportive figure in my life.

When I found out he was coming to the Center for Deafness while I was performing, I made up my mind to get his attention. I recall standing behind the curtain, peeking out to spot him in the audience. After the show, when he tapped me on the shoulder and said I was great, I really wanted to talk to him. My mom told him not be too encouraging, and when I explained the situation to him, he said, "You're in the wrong place." We stayed in touch. I sent him letters when I was 14 and 15, which I still have. When I landed my first professional acting gig at 19, he sent me a bouquet of flowers. We kept in touch from the time I was 12 until I was 19. Then, I landed the role in "Children of a Lesser God." I remember asking Henry if I could crash at his place for the weekend, and it turned into a two-year stay. When I decided I needed to move out and become independent, I told him, "I think I should move out," and his wife Stacey said, "What did we do wrong?"

Typical Jewish mother!

[Laughs] My mom is totally a Jewish mom! Then I met Kevin, my husband, and I told him we needed to go to the Winker house. Henry and Stacey were in bed reading the newspaper and I went like this [gestures showing off an engagement ring] and Stacey said, “You’re getting married here!” The dance floor was built right on top of their swimming pool – because they also wanted to use it for their daughter's Bat Mitzvah, so it was a great deal, two for one.

In the documentary, we see you directing an episode of "The Muppets" production. Accused Actually, you have created some projects. Do you think you will be more behind the scenes, or perhaps write a film to create more chances for you and other Deaf actors?

"Hey, I love you. You're terrific. Smooches Smooches." However, I'd rather work behind the scenes as a director or producer.

She's generated a large number of projects.

I'm getting anxious, hopefully this documentary will get things moving and people will understand what I have to offer. It's working on a different level, it's not just about what I can do or what Deaf people can do, but how we communicate and contribute our skills to make a project better.

I was so moved by your singing. Billy Joel What's something folks might be surprised to learn about you?

I only sang that song for my own reasons. Only a few close friends know that I do it in the car. And, as a fun fact, no one's aware that I sang that song to Billy Joel at his house back when he was married to Christie Brinkley - they even captured it on tape. I need to get in touch with her to get a copy of that; if you can help me track down that footage, that would be fantastic. You know Gary, if you can make that happen, that would be great.

The film festival will be held on January 23-25, and February 29 in person, and then available online from January 30 to February 3.