Sharing Her Voice: A Passionate Disability Activist Reflects On Her Work


Editor’s Note: We are grateful to Liane Carter for sharing the talk that she gave when honored with the Leadership Award at Matan’s Annual event.

Thank you so much, Suzanne Aisenberg, Dori Kirshner, Matan board members, and tonight’s event committee. I am so honored to be this year’s recipient of Matan’s Leadership Award. Congratulations to my fellow honorees, Ed Asner and Pam Schuller, two brilliant performers and passionate disability rights advocates. I love that you both “got spunk.”

Twenty-something years ago, my son Mickey’s diagnosis was the earthquake at the center of our lives. But there’s a silver lining to life with autism, which is this: when you have a disabled child, you will meet some of the best people you never wanted to know. I’m thrilled to see so many of you here tonight.

When Mickey was diagnosed in the mid 90s, I didn’t know much about autism. Most people didn’t. That was before the Internet was invented by Al Gore. I was hungry to find a book called “What to Expect When Your Child Is Autistic.” But it didn’t exist, which is why I finally wrote the book I wish I’d had back then. Our theme this evening is “Share Your Voice,” so I’m going to share a story that illustrates why the work that Matan does is so important to me.

So here it is. When Mickey was only two years old, he got kicked out of our temple’s nursery school. That’s right. They kicked him out.

He didn’t do anything bad, like clonk another kid over the head with a toy truck. He wasn’t aggressive. In fact, he was sweet and sunny. But he didn’t speak, he couldn’t sit still, and he didn’t seem to pay attention to the teachers. They didn’t know how to engage him, so mostly they just… ignored him. On Picture Day, they didn’t even include him in the class photo. The other moms didn’t talk to me. They’d arrange play dates for their kids right in front of me, and no one ever asked us to come too.

We didn’t know why Mickey wasn’t talking, so the pediatrician sent us for an evaluation. I told the nursery school director, “Mickey has been diagnosed with a speech and language disorder.”

And she said, “Is that all?”

Maybe she meant, “Oh, is that all, no big deal, we can handle it.” But that’s not how it sounded. What I heard was, “Is that all? You’re holding out on us, it’s a lot worse. He doesn’t belong here.” At the end of the school year, she told us not to come back.

That was nearly 24 years ago, and it still hurts.

Kids like Mickey get left out a lot. They don’t get invited to birthday parties or sleepovers or to play travel soccer. I felt like other families were feasting in a delightful restaurant, while my family stood outside hungry, with our noses pressed against the window. When you feel isolated like that, one place you’d naturally look to is your faith community, but back then, many schools and synagogues just didn’t get it. They were turning away families from early childhood programs, and Hebrew schools, and summer camps, because they weren’t equipped to help. It wasn’t done out of malice. It was done out of ignorance.

That’s why Matan was created. To fill that void, so that families like mine would no longer feel like we were in free fall. When Mickey was 11, Matan launched a multi-sensory program at our local JCC. For three years, they taught him about holidays and history, while in the room next door, they ran a parent support group. Matan gave us not only Jewish education, but Jewish community. Thanks to Matan, as well as to other innovators here tonight, the inclusion landscape slowly started to shift. The Jewish community finally began to realize that by excluding 20% of its families, they were the ones missing out.

When we first joined our temple, no one like Mickey had ever had a bar mitzvah there. But with the help of Matan, as well as the amazing Rabbi Angela Buchdahl, we created a service that was right for him. Mickey couldn’t read Hebrew. But he has a terrific memory and he loves music. Angela is also a cantor, so she sang all the blessings and prayers into a recorder for him. He loved that music so much that even now he still listens to it. On the day of his bar mitzvah, this child we were told might never speak at all sang every single song. In Hebrew! He helped Angela lead the service. He even read a very short speech. IT. WAS. ASTONISHING. There was so much emotion in that room that our friends Nancy and Chuck kept passing the same soggy Kleenex back and forth. Near the end of the service, Angela sang L’chi Lach, which means “Let us go forward.” It ends with the words, “You shall be a blessing,” and Angela said, “Michael Carter, you are a blessing, to everyone in this room.” Mickey grinned. “Thanks! You too!” he said in such a chipper tone that everyone laughed. Angela concluded the service, and the room erupted in applause. I could literally feel this extraordinary communal embrace that drew in my husband, our two sons and me, and held us close. Mickey raced over to my dad and said, “Grandpa! I did it! I did it! Are you proud of me?” My dad hugged him and said, “You made everybody proud today.” It was a journey of faith and healing for all of us. On that beautiful, blazing summer morning, finally I felt like a normal family.

I’ve been on this autism journey a long time now, and I’ve witnessed the evolution of the Jewish community waking up to inclusion. We’ve come a long way since Mickey got kicked out of nursery school. Today we have services in sign language and prayer books in Braille. But what about when the disability doesn’t show? When it isn’t physical? You know what’s still the biggest barrier to including kids like Mickey? It’s fear.

Look, I get it. He’s different. People are scared of what they don’t know. But see, any of us, if we’re lucky to live long enough, may have disabilities of our own someday. Maybe we’ll need hearing aids. A walker. A wheelchair. Disability is a normal part of the human condition, and we’re all in this together. When kids come to synagogue, they are ALL our kids. Inclusion has to be more than building a wheelchair ramp and thinking you’ve done your part. Inclusion isn’t a place, it’s an attitude. Real inclusion starts with an open door in our hearts.

You know how every year at the Passover seder, we fill a cup with wine for the prophet Elijah? We’re told that Elijah roams the earth disguised as a stranger. During the seder we open the front door. If we find a stranger on the doorstep, we’re told to welcome him in and give him a seat at our table. Is there a better metaphor than that for inclusion?

Mickey is 25 now. He will be an autistic adult much longer than he was an autistic child, and he’s going to need a lot. Things like safe housing. Social services. Employment opportunities. But most of all? He needs a community that truly welcomes him, and we’re still not there yet. We need to keep sharing our voices, our passion, our commitment, until Mickey and everybody else who’s differently-abled is welcome at the table.

That’s why I served on the Matan board for 13 years, and why I’m on the Professional Advisory Board now. It’s my way of giving back to an organization that has given our family so much. Thank you, Matan, for your unwavering commitment to full inclusion. Thank you for this honor tonight. Congratulations again to my co-honorees. And finally, thank you to my sons Jonathan and Mickey, and to my husband Marc. You three are my heart and my soul, and I love each of you to infinity and beyond.

Thanks again.

Liane Kupferberg Carter is a nationally-known writer and advocate for the autism community.