While John C. McGinley
is best known for roles on TV’s Scrubs, and the films
Wall Street and Platoon, he also works to raise awareness
about Down syndrome, stop verbal bullying and promote better opportunities
for people with disabilities. He and ABILITY’s Chet Cooper
recently met up at McGinley’s home in Malibu, CA.
Chet Cooper:
The last time we spoke, you had one child, Max. Now you’re remarried
with two little girls. What are the challenges of raising a teen with
Down syndrome, along with two children under five?
John McGinley: Half
the gene pool that spawned Max also spawned Billie, my soon-to-be-four-year-old,
so I’m hypersensitive to any challenges she may have. [Kate, at
17 months old, is too young for school.] We’ve discovered that
Billie can completely disengage, which troubled Nicole and I, so we
took her to an early-education interventionist. She tested our daughter
primarily by giving her tactical puzzles. As long as Billie was left
alone to do them, she was fine. But when the teacher tried to give Billie
praise, she was not interested. What this revealed is that Billie is
fine as long as she is engaged in an activity, but she doesn’t
care for the traditional approval or an A, B or C grade. Our takeaway
is that Billie is fine and that we’ll have to find ways, people,
systems, etc., that challenge her, because she doesn’t care about
kudos.
Her biggest strength
is language. She’s extraordinarily verbal, and Max’s biggest
challenge is his lack of spoken language. He can read at a certain level
and do arithmetic, but he doesn’t form sentences. So parenting
Max and parenting Billie represent two polar opposites on the spoken-word
spectrum. How we parent them in the same household and find a happy
middle has been really interesting and continues to be.
Cooper: How do
they communicate with one another?
McGinley: Max sometimes
gets frustrated in his inability to communicate verbally, so he uses
gesture and sometimes an inappropriate amount of physicality to communicate.
I always have to try to remember the special-needs component as opposed
to the brother-and-sister-separated-by-11-years dynamic. It’s tricky
to find the balance. We were reminded of this about a month ago, when
Max, Billie and Kate, my 17-month-old, were in the playroom, when we
heard a shriek. Max has very sensitive ears, and whatever noises Kate
was making disoriented him. But he was not able to go, “Kate, would
you please stop making that noise?” so he made her stop physically.
Was it the end of
the world? No. For all I know, he just tapped her. But it reminded us
that we still need to be vigilant and not overburden him as he charts
his course through a nonverbal landscape.
Cooper: How often
is Max with his sisters?
McGinley: Thursday
through Monday every other week and every Thursday. It’s a great
chunk of time, and then big chunks throughout the year. All that custody
stuff has been ironed out and is great. In fact, we’re taking his
mom [McGinley’s first wife, Lauren Lambert] to Hawaii with us.
Cooper: Does
she know that?
McGinley: (laughs)
Yes. Nicole handles that stuff, and it’s great. It’s a big
deal to have all that drama in the rear-view mirror. So we’re all
going to Hawaii together.
Cooper: Let’s
talk about Denver. How did you come to work with Michelle Whitten and
the Global Down Syndrome Foundation (GDSF)?
McGinley: They called
me a couple years ago, but I was still pretty shoulder-deep in the Buddy
Walk with the National Down Syndrome Society. But after eight years
my message had gotten a little stale. I told them, “You need a
new person. I’m not going to abandon you, but you could benefit
from a fresh face and a new angle.”
Meanwhile, Michelle
had been calling from Denver for a while. One day, we had lunch and
she told me about her organization. It sounded great, and she was one
of the most dynamic women I’d ever met. The one thing that she
said that really wowed me was, “We have a lobbyist in Washington.
We’re going to move this ball forward the way the big boys and
big girls do.” I told her, “I need to serve on your board.
I need to have a voice in what you’re doing.” She said, “You
would be on our board?” I said, “Very much so.”
A lot of groups
try to effect change through fund-raising alone. But there’s a
dirty little secret with Down syndrome fund-raising. It’s unspoken,
but what funders are basically saying is, “If you had the prenatal
test, you could have had an abortion [and avoided having a child with
Down syndrome], but you didn’t. So what do you want from us?”
It’s reflected in the numbers at NIH. Their budget is $28 billion
and only $14 million devoted to research on Down syndrome? That’s
not a mistake. When somebody prioritized what to focus on, they said,
“Let’s give 14 mil of this 28 bil to Down syndrome research.”
That’s shockingly small.
Cooper: But the
approach GDSF doctors have taken is to flip that. They can show how
Down syndrome research benefits so many other conditions, which means
that they can approach the National Institutes of Health on more than
a dozen other funding fronts.
McGinley: The organization
is smart that way. And Michelle is a badass; I mean that in a good way.
She’s a Harvard Business School person who runs her nonprofit foundation
like somebody who went to Harvard Business School. A lot of these Down
syndrome organizations are ultra-right-wing Christian, because they
don’t believe in abortions. I’ve gone to different events
where it was all about Christ looking after His children. It struck
me: What about Yahweh? What about other faiths? GDSF doesn’t promote
any religious cause. I love that. I’m going to be with them for
a long time.
Cooper: Hopefully
not after 2017.
McGinley: Why?
Cooper: Their
goal is to eradicate Down’s negative health effects by then.
McGinley: That makes
me even happier. That’s genius.
Cooper: That’s
John Sie, Michelle’s father, the engineer, who’s goal-oriented.
They’ve given their scientists 10 years to get it done.
McGinley: Yeah,
I met John and the head doctor, Ed McCabe, and his wife and colleague,
Linda. I want to push the rock uphill with those people. I met an attorney
who’s on our GDSF board. He was a top-of-the-food-chain litigator
in Washington, DC, for 40 years, and he reminded me of the way Henry
Fonda played Clarence Darrow in the movie. He argued the Valdez case
in front of the Supreme Court, he’s argued dozens of cases, and
he’s in our corner.
Cooper: Music
producer and humanitarian Quincy Jones is connected to the GDSF as well.
Had you met him before?
McGinley: Not until
we flew down to Santa Monica together on John Sie’s plane a couple
of months back, and I got to ask him questions. He’s lived a huge
life. He was telling me a story about Dr. King and John Kennedy, whose
inauguration he played. Quincy is from Seattle, and when he got out
of college, he relocated to Paris from 1953 to 1960. That was less than
10 years after World War II, which ended in 1945. At that point, Europe
was just rubble. And he and his band toured Europe for seven years.
I said, “What in God’s name was that like?” He was telling
me stories about going to Brussels, which was flattened, going to Berlin.
I’m a history freak and talking to him was just incredible.
Cooper: I had
the same experience with him. But you were lucky. You had more time
to go even deeper into his world.
McGinley: I thought
your interview with him was great. I wish I’d read it before, because
I would have been able to follow up on questions you asked. I wish I
could remember everything he said. He’s very hooked into the Middle
East. He knows both sides on the Palestinian-Israeli issue. He also
knew one of my heroes, Langston Hughes. When I mentioned him, Quincy
said, “Langston was a friend of mine,” and he was not just
name-dropping.
Quincy said he’s
an “unstoppable traveler.” I said, “Don’t you get
tired?” He kind of looked around the private jet and said, “No.”
He told me, “You’ve gotta go to know. If you don’t go,
you don’t know. I’m like, “You’re the man!”
Cooper: It’s
so true.
McGinley: You don’t
know about the Palestinian-Israeli conflict unless you go and see it
for yourself.
Cooper: I went
a couple of years back, and I agree: You’ve gotta go to know.
McGinley: I can’t
wait to get there. I want to take the kids and stay a couple weeks.
Cooper: Tel Aviv’s
like New York with a beach. You can actually catch some waves.
McGinley: I’ve
seen pictures of surfers there......
continued
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Excerpts
from the John C. McGinley Issue
Dec/Jan 2011-12:
Kessler Foundation — Research
That Gets People Moving
John
C. McGinley — Expanding His Role
John Sie — And the Global Down Team
Food
Deserts — Activists Help Communities Get Good Food
Ashley
Fiolek — Befriends Noora, an Iranian Racer
Raketu — Cool Apps for the Deaf and Hard of Hearing
DLRC — A Fight to Protect a Boy and His Dog
Articles
in the John C. McGinley Issue; Ashley Fiolek — Befriends Noora,
an Iranian Racer; Noora Moghaddas — Befriends Ashley, a US Racer;
Humor — To Anchorage With Love Sen. Tom Harkin — Jobs + Education
= American Dream; Raketu — Cool Apps for the Deaf and Hard of Hearing;
Adaptive Golf — The Fight Over Carts; USBLN — Annual Conference
in Kentucky; Kessler Foundation — Research That Gets People Moving;
Food Deserts — Activists Help Communities Get Good Food; John C.
McGinley — Expanding His Role; John Sie — A Career That Spans
Tech, TV and Top Research; Global Down Syndrome — Bringing Their
‘A’ Team; DLRC — A Fight to Protect a Boy and His Dog;
Betsy Valnes — On Creating a World Disability Congress; ABILITY's
Crossword Puzzle; Events and Conferences...
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