Carly’s Voice (29 page)

These “thank yous” and “you’re welcomes” are traditional fare at an event like this,
but most guests were not expecting what was to follow. Less than twenty people knew
about the video; fewer still had actually seen it. My heart kicked into high gear
with anticipation. I wanted everyone to have the same reaction I had had when I watched
Ellen reading Carly’s words for the first time. I felt a surge of adrenaline; finally
others would see Carly through a new lens. I was acutely aware that once her speech
was read, Carly would no longer be the same person she once was. She would be publicly
transformed from
the daughter with autism
into someone much more present and complex than anyone had known. We had described
Carly’s writings and conversations to friends and family during the past year, but
there was no comparison to hearing Carly’s words firsthand.

The room was briefly plunged into inky darkness before a shimmery light bounced from
the projector screen. Ellen appeared, sitting on her set decorated for the Christmas
holiday season. There was no audience in the studio, just my daughter’s idol, in her
signature chair, looking straight at the camera. “I received this letter from Carly,”
she said, and went on to explain that Carly had asked
her to read the following speech. She was happy to do it, she said, because clearly,
this was a very special girl. “So here we go, the words I’m about to read are her
words. These are Carly’s words.”

“I am delighted to be here. I really don’t know what to say but thank you for coming.
It’s been four months that I have been working hard on this speech and I hope you
like it. I was hoping to read this speech to you. But I can’t so I asked someone who
makes me smile to read it for me.

“I have to tell you, I cheated and looked at some other girl’s speech and she thanked
everyone who came from out of town. I was told that people are coming on planes and
trains just to see me.

“Okay, you can go now!”

At that, Ellen cocked her eyebrows and smiled. “
That’s
funny.” She continued:

“I know I might act or look silly to some of you, but I have autism that makes me
act this way. A lot of kids and older people have autism, too. I am not the only one.
Autism is hard because you want to act one way but you can’t always do that. It’s
sad because people don’t know that sometimes I can’t stop myself and they get mad
at me.

“I can’t talk with my mouth but I learned how to spell and I can talk on my computer.
It helps me sometimes to get things that I want like chips and candy. I like chips.
My dad said that even though I can’t talk now one day I might be able to. Two years
ago I learned how to spell so who knows, one day I might be able to read this to you
myself.

“If I could tell people one thing about autism it would be that I don’t want to be
this way but I am. So don’t be mad; be
understanding. I think people don’t like things that are not like them or look funny.
But we are not all the same and why would we want to be?

“I do want to be like everyone else but I think I would miss things about being me.
Like when I spell for someone for the first time and see the look on their face. And
that even when people are mad, if I cuddle with them they are happy again.

“When you grow up you might want to be a doctor or a teacher or just want to make
people laugh. But I want to be a cook. When people are eating they look happy and
I want to make people feel good.

“They say when you have a bat mitzvah you turn into a woman but it is not really true.
I think a bat mitzvah is just the start. I think it is like me and spelling; it takes
a long time to be able to get good at it. I don’t think anyone can say they are the
perfect woman. I am sure I will make lots of mistakes. But that is okay. That is how
we learn.

“A bat mitzvah is funny. It says that now you should know all about being Jewish but
it says that now you are old enough to
learn
about being Jewish.

“I was told that my sister has to read something in different letters and I can’t
do that. So my friend Barb told me to talk about something Jewish. What I am going
to talk about really should not be just for Jewish people it should be for the whole
world. It is called Tzedakah. It is when we are giving not just things like cookies,
but giving of ourselves.

“If everyone in the world did one nice thing for someone other than yourself the world
would be a nicer place. I can’t say that we should be nice all the time because I
think it’s sort of like me. I can’t help it when I do things, but I think we should
try hard to be nice when we can.

“I was told at camp that when I smile everyone starts to smile so maybe just for today
we should walk around with a smile on our face and then everyone around us would start
to smile and it might just come back to us. I would like to make people in the world
happier so I made cookies with dad for people who don’t have food. It must be sad
not to have food. I love food. I think I would be happy if someone took time from
their day to make food for me; then maybe I would want to do some thing good for some
one else. It was lots of fun and rewarding knowing that I made cookies for people
who really needed them and that’s why I did not eat all of them. I gave the men the
cookies and they were happy to get them. The strange thing is even though it was my
project, my whole family took part in it one way or the other.

“I have to say I like my dad so much. He is so nice. I am now a woman but he still
reads me stories in bed.

“My brother Matthew is funny. He tries to be the boss sometimes but it never works.
Sorry Matthew.

“My mom is always doing work for me and tells me I am a hand full.

“Which leaves me to Taryn. It’s hard when you want to play the same games as her but
you can’t or when you break something of hers and you did not mean to. But even though
all this happens she still loves me and I love them all.

“Lots of people have worked with me to help me get where I am. I want to say thank
you.

“But one I have had for the longest time. His name is Howie.

“Every time I tell him my dreams he says one day it will come true. So I just want
to say one day your dreams will come true too.

“Okay, I thanked every one for coming I talked about autism and my Jewish topic but
how should I end this?

“I know.

“A wise woman once said that if you don’t have anything else to say then you should
just do one thing.

“Dance.

“Have lots of fun.

“I know I will.”

Ellen’s voice snagged with emotion, and she wiped her eyes. “Carly, you are amazing,”
she said. “This is for you,” she concluded, before proceeding to dance her signature
dance across the stage.

There was a pause in the room as the lights came back up and our friends and family
absorbed what they had just seen. Then, as if breaking a vacuum seal, everyone rose
in applause and cheers. I stood to the side of the screen next to Tammy, Matthew,
Taryn, and several of the young women who worked with Carly through the years. As
I watched, I slipped my arm around Tammy. Although I had seen the video numerous times
to convince myself it was real, sharing it in a grand venue gave it an impact I was
not ready for and I found myself winded.

Over the course of her speech, Carly helped people see sides of her that many of us
had taken for granted. Instead of being bitter or petulant, Carly exhibited the same
sense of humor that often kept our family from careening off the rails.

Carly had written this speech to be read by Ellen. The timing and cadence was that
of Ellen’s own monologues. Carly had never doubted for a moment that Ellen would be
her voice.

Although I had watched her speech unfold over the preceding months, it hadn’t occurred
to me that Carly wanted to help people who were faced with greater hurdles than her
own. In fact, it had
never occurred to me that there
were
hurdles greater than her own. She did not see herself as “one of them” but as one
of us. In fact, perhaps she was a better
one-of-us
than most. Despite the obstacles that kept her out of the mainstream, Carly was not
looking for sympathy but rather for acceptance.

I looked about the ballroom. People were dabbing their eyes and blowing their noses
as if we had all experienced some sort of collective catharsis. The waitstaff, bartenders—even
a security person required by the hotel for such events—all stood statue-still, momentarily
chilled with emotion.

“Okay,” I said turning to the DJ, “you better play something lively. Now.” Kanye West
burst from the dance-club-sized speakers.

I had watched Carly throughout the reading. She sat on the edge of the dais, with
one of her aides and therapists. Carly never looked up at the screen once. Rather,
she sat unusually calmly with her delicate ankles crossed; her elegant taffeta dress
billowing around her. She had the pensiveness and composure of royalty. She looked
down at her hands clasped on her lap, blowing breaths through pursed lips. Clearly
she was making every effort to sit calmly. Or was she basking in the knowledge that,
after waiting thirteen years, she had finally been heard?

A friend of ours who had known Carly since childhood approached me later that evening.
“I will never look at your daughter the same way again,” was all she could say before
she drifted back into the crowd.

And neither would I. Carly was standing just outside the group on the dance floor,
those who were laughing, clowning around, and drinking. She stood apart but closer
to the crowd than she had ever been, clearly content, even proud, maybe for the first
time in her life. She smiled as friends grabbed her arms and danced her around in
circles.

I observed the scene, briefly removed from the festivities and reflecting on a comment
Carly once made about her ill-functioning mouth and her wish that we could “fix her
brain.” I watched my daughter that night—able to move people with her words—and I
realized that not all that is broken needs to be fixed.

Hi Ellen.

They say that one of the greatest gifts in the world is someone’s voice and I can’t
believe it but you lent me yours.

I know I have thanked you a thousand times. But I feel like I still owe you your birthday
wish.

I was watching your show for the New Orleans party and I know your birthday dream
is to give people without a place to live a home. It would be so sad not to have a
home. I love my home.

I wish I could twirl my magic dream wand and give all the people without a place to
live a home. Or I wish I lived closer so they could stay at my house. They can sleep
in my parent’s bed and my dad could read them stories. They might like that. His stories
always cheer me up.

I might not have a magic dream wand but I want to make your
dreams and the people of New Orleans’ dreams come true. I was given money at my party
and I was told I could do whatever I want with it. I was going to use it to fly down
and see you so we can hang out. But I wanted to give the money to you and the people
of New Orleans instead so they can make it right.

I am sending you $550.50 since you turned fifty years old. I know it’s not enough
to build a house, but I hope it’s a start.

I think Howard was right when he says that if you believe in your dreams it will come
true. Maybe, just maybe, if we want it bad enough all the dreams of the people in
New Orleans will come true too.

I hope you had a great birthday with Portia and I hope I helped make one of your dreams
come true.

Keep dreaming.

Love,

Carly

Carly seemed to take the notion of her bat mitzvah to heart. After her experience
with Ellen and the emotional response she received from the speech, Carly’s writing—and
so I assume her outlook on the world—matured. She continued to have the same physical
struggles such as disrupted sleep, paralyzing compulsions, and mannerisms stereotypical
of people with autism. But her voice was transforming. We started to see more playfulness
and a greater concern with the world around her, and the events of the following months
fueled this momentum.

Tammy had begun an annual ritual of taking Taryn to visit cousins in Los Angeles over
Taryn’s midwinter break several years before. It was a way of balancing out the time
Tammy spent keeping Carly’s world spinning on its axis—time that could not be spent
with Taryn. I never really understood the enthusiasm the two shared for the city.
To me, LA was a sprawl, and other than a few
friends, I had little connection to the place. This year, however, we decided to take
a family trip—something we hadn’t done in several years.