John C McGinley

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 in ABILITY Magazine click here to order a print copy or to subscribe Or get a free digi issue with a "Like" on our Facebook page.

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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... subscribe

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