Joe Mantegna isn’t so much a movie star as a character actor.
Since his debut in the 1969 Broadway production of Hair, he’s
diligently perfected his craft. Over the years, he’s added writer,
producer and director to his credits, along with his roles as husband
to wife, Arlene, and father of grown daughters, Mia and Gia.
Mia, his oldest, is autistic, high functioning and well aware of her
condition. She also has a wealth of support in her family who ensure
that she’s involved in the world as much as possible. Her father’s
career as an actor has played a part in her development, as well.
“Show business is such a public profession,” Mantegna says,
“and there are not many shrinking violets. So you’re talking
about people with a lot of personality and energy and putting that
energy out there. It’s probably a positive thing for my daughter
Mia, because it’s a dynamic environment where there’s a
lot of stimulus and interaction.”
“It’s an in-your-face kind of stimulus. She hasn’t
existed in a closed society where she’s hidden behind the curtain
and it’s like, ‘We’ll deal with this privately,’”
he continues. “It’s always been our intent as parents to
get her out in the world, so she can learn to cope. We know there
are obstacles to overcome, but at the end of the day, she’ll
be better prepared to continue on in her life probably for many years,
well beyond when either her mother or I will be around to help. So,
it’s important that we give her all the tools and help we can
now.”
Long one of the busiest actors around, with a resume that ranges from
The Godfather: Part III to The Simpsons, Mantegna tries to impart
the wisdom of his years to his daughters. “You can list a myriad
of diseases and things that can go wrong with a human being,”
he says, “but you find accommodations can be made. You have to
adapt to the world as it is and find modifications whenever possible
to make life a little easier.”
When he was first starting out as an actor, however, Mantegna refused
to take the career path that seemed easiest.
“I didn’t have a plan B,” he says. “I knew I wanted
to be an actor starting at the age of 16. It was all or nothing.”
That’s been his approach as a parent of an autistic child as
well—no fallback position, full commitment. And that in part
explains why he recently hosted ACT (Autism Care and Treatment) Today!’s
annual Charity Golf Classic Tournament in Westlake, CA, where he helped
raise funds for military children with autism.
“My feeling is, if it helps put a face on these kinds of organizations,
why wouldn’t I [support it]?” Mantegna explains. “There
are a lot of people less fortunate than I am. I have the means and
the capability to take care of my daughter. Many people have it a
lot tougher. So when I’m asked by these organizations to devote
some time and energy to helping them reach some of their goals, I’m
glad to do it,” he says. The military angle was a bonus for Mantegna,
whose uncle served in General Patton’s 3rd Army during World
War II. The actor is a staunch supporter of the U.S. Armed Forces,
and co-hosts an annual Memorial Day concert with fellow actor Gary
Sinise.
Autism affects the rich and the poor, the obscure and the well known,
including Sylvester Stallone, Jenny McCarthy, Holly Robinson Peete,
and Aidan Quinn. More children will be diagnosed with autism this
year than with AIDS, diabetes and cancer combined.
Mantegna, 65, was born in Chicago and studied acting at DePaul University.
He married Arlene Vrhel in 1975. Eleven years later their daughter
Mia was born after an emergency C-section performed to save the child’s
life. At birth, she weighed one pound and 13 ounces, and spent her
first few months in intensive care. A few years later, the Mantegnas
noticed that her ability to speak was as limited as her attention
span. After having her evaluated by a neurologist, they received the
diagnosis.
Even though it was 22 years ago, Mantegna remembers it distinctly.
“When they tell you your child has autism, it’s devastating.
It feels like somebody shot a cannonball into your chest.” He
remembers listening to the doctor and feeling the hopes and dreams
he had for his daughter begin to be replaced by worry and concern
that she’d never have a fulfilling life.
Mantegna pauses, the memory clearly visceral for him. “But, you
know, you have a couple of choices during a moment like that. One
choice is to surrender and whine, ‘Woe is me,’ and see the
glass as half empty. Or you pull yourself together and see the glass
as half full. And you ask yourself, ‘How do we try to maybe fill
it up a little more?’”
Mantegna and his wife resolved to face it as a family. His film career
was full swing, requiring him to spend months on location all over
the world. Yet, he made certain his wife wasn’t going to have
to deal with parenting on her own. “I would have to do movies
in Russia, Canada, or Australia. Do I say, ‘ Honey, you’re
here with our daughter. Good luck. I’ll be gone for a month or
two. I wish you the best?’ Or do I make accommodations?”
For the actor, it wasn’t a difficult question to answer. He chose
to stand his ground when negotiating with producers. “Okay, we’re
going to Russia for three weeks? Then [my family is] all going,”
he would tell a producer. “‘Really?’ the producer would
ask. ‘Yeah, really. We’re all going or I’m not going.
Get another actor.’” Mantegna’s resolve paid off, and
his family benefited.
As a result, Mia and Gia have traveled the world, attending schools
in different countries, and Mia has been exposed to a variety of therapies.
As the girls got older, however, world travel got less appealing.
“They didn’t want to move so much, understandably,”
Mantegna recalls. “They had friends, and their social life evolved
around school. I realized I had to look at what I could do to change
my lifestyle. Rather than traveling the world making movies, what
else could I do professionally?” Mantegna has been a regular
on the TV show, Criminal Minds, for six years, which has enabled
him to come home every night and lead a more balanced life.
One trait he possesses that allows him to roll with the hard knocks
is his sense of gratitude. “I don’t care how successful
you are, who you are, or what walk of life you come from, everyone
has their own story of problems and challenges. If having a child
with a disability is the worst thing that has happened to me in my
life, then so be it. I’ve been lucky in many respects,”
Mantegna reflects.
He is aware of the contrast between his life and some of those around
him on the golf course in Westlake. “Talking about military families—they
don’t have the luxury, as I do, to be with their families while
they work. I played golf with these men today. One of them is in the
Navy and works on a submarine. He gets on a submarine and goes away
for six months on tour. He can’t take his wife and kid with him—autism
or not. They don’t give you an extra bunk on the sub.”
Mantegna tends to see things that way, from a practical point of view,
from an Everyman perspective, sometimes looking in, sometimes looking
out. He thinks back, for instance, to when Mia was first born and
he and Arlene had a sense that their life was going to change but
didn’t know exactly how: “I didn’t know what it was
like not to have a child with autism. It had its challenges, without
question. And sure, if I could summon a genie who could grant me one
wish in this life, I would say, ‘Let’s fix that! Let’s
make that go away!’ But that’s not going to happen. So it’s
something my whole family deals with, and we just do the best we can.
A lot of people are dealing with things far worse. It’s like
the old proverb: I lamented over the fact that I had one shoe until
I saw a man who had no feet.
“I think in some ways you’re strengthened by these kinds
of challenges in life. If you can’t totally overcome them, just
make the best of the situation.”
Mia’s autism has not only strengthened her mom and dad but enabled
her sister, Gia—born two and half years later—to learn empathy
and compassion at an early age. Having a second child gave the Mantegnas
a broader perspective on both parenting and child development. He
says, “If you just have that one child”—one diagnosed
with a disability—“you never will understand the normal
kind of developmental stages that a child should go through to reach
maturity.” With Gia, the Mantegnas were able to discover which
behaviors could be attributed to autism and which were just a part
of growing up. Some things were similar and some were different. “In
many ways my younger daughter has to be the older sister because you
have one child who develops up to a certain point, where the other
child bypasses her in many areas. But Gia benefits from that in many
ways.”
The pride is Mantegna’s eyes is clear as he talks about the relationship
between his daughters. “At a very young age, Gia understood that
her older sister was a lot different than the other kids,” he
says. Gia sensed that she had to take the reins and grow up a little
faster. She’s become Mia’s protector, her guardian and even
her teacher.”
Mantegna has seen firsthand the difference between those who don’t
have empathy for Gia and those who do. One of the latter, a teacher
in Chicago, was instrumental in helping the family realize they didn’t
have to always protect Mia from the rest of the world, and that she
could learn with the other students and adjust to changing environments.
That teacher convinced them it was all right to put Mia in a regular
first-grade classroom as long as the other children, and the adults
who interacted with her understood more about her condition. Not surprisingly,
that teacher had a sister with autism.
“It was the first time a teacher, or any one else, said, ‘Don’t
worry about it’ and included her in a regular class,” Mantegna
recalls. “Up to that time, my daughter was in special education.”
The actor and his wife sat in the back of the classroom and observed
as this caring instructor took Mia by the hand and led her to the
front of the class. She introduced the child by saying: “Here’s
Mia. She has autism. She’s going to be a little different than
the rest of you. She’s going to probably talk to herself. She
may just walk up to the blackboard and start drawing. She may sing.
She may say strange things, but we’re all going to help her,
right?” The Mantegnas became teary-eyed as they watched a room
full of 6 year olds respond enthusiastically: “Yeah, OK!”
That teacher had a tremendous impact on how the family viewed their
situation. They moved from necessity thinking to possibility thinking.
As parents, the Mantegnas would never again buy into the idea that
their daughter had to be in special education and forever live in
a sheltered environment.
“When we came back to Los Angeles, that experience changed our
whole outlook on how our daughter should be educated—what we
should expect from the schools, what we should expect from life in
general, in terms of inclusion,” Mantegna says.....
continued
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Excerpts
from the Joe
Mantegna Issue
Oct/Nov 2012:
Charlie
Kimball — Racing Against Diabetes
Road Trip — MS Changes a Biker’s
Course
Chinese
Art — Raw Beauty of the Innocents
Joe Mantegna — When Life Flips
the Script
United Nations Accessiblity and Assistive
Technology
Articles
in the Joe Mantegna Issue; Senator Harkin — US Budget Must Reflect
Our Values; Ashley Fiolek — A Concussion Tests Her Ability; Humor
— All in the Family; Web Widget — Accessibility Works; Chinese
Art — Raw Beauty of the Innocents; Geri’s — Survivor
Guide; Golf Pro — One Arm, Limitless Possibilities; Road Trip
— MS Changes a Biker’s Course; Charlie Kimball — Racing
Against Diabetes; Joe Mantegna — When Life Flips the Script;
Nancy Alspaugh-Jackson — Crusader For Autism; DRLC — Beware
Genetic Discrimination; Betsy Valnes — Connect the Dots in Disability
Circles; ABILITY's Crossword Puzzle; CRPD — Information and Communication
Technologies; Events and Conferences...
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