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.
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.
Cooper: I was lucky that I actually went into some other places. I went into Jordan. The Romans were everywhere. There are Roman ruins in Jordan.
McGinley: I got to meet the queen of Jordan through a friend of mine. She’s pretty special.
Cooper: Nice. There’s a big conference on disability coming up in that part of the world—in Qatar, actually. They focus on quality-of-life issues and education, all the things that are needed here now. This conference will be their fifth. Some of the Kennedys and Shrivers may show up for it.
McGinley: I was invited to the Special Olympics World Winter Games in Boise, ID, by Tim Shriver. It blew my mind. At the time, I didn’t know what the Special Olympics were. Tim wants those kids to win. He wants them to beat the other kids’ asses—competitively. It’s not all we-are-the-world fuzzy; there are clear winners who get gold, silver and bronze medals. People with intellectual disabilities can—and will—succeed when given the chance. I think that’s great.
Cooper: The old message was, Everybody is a winner.
McGinley: Right. While I was at the Games, I discovered their Youth Leadership Forum, which had about 160 athletes from around the planet. All of them speak English, and Tim brings them to the table to discuss whatever issues are on their minds. That week the group talked about the word “r*tard” and “r*tarded.” Completely coincidentally, or maybe not, since you don’t have to look too far, Dick Morris was on The O’Reilly Factor that week, where he said something like “I must be r*tarded, because I can’t understand the president’s program.” The kids quickly composed a letter to the show, sent it in, and to his credit, O’Reilly apologized at the end of the week and said the word would not to be used on his program anymore. Judging by their response, you’d have thought the kids won the World Series.
Cooper: Or the Special Olympics.
McGinley: So because they got a little traction, they decided to choose a day to bring attention to the subject. And we came up with a phrase, “Spread the word to end the word.” It went viral, and we set up a link on the Special Olympics Web site where you can take the pledge to stop using the “R” word. The first year we had 20,000 pledges. Last year we had 60,000. It’s baby steps, but that really turned me on to the Special Olympics.
Cooper: It’s a challenge to get people to take the “R” word seriously.
McGinley: Tim’s ability to talk about it is unmatched, and he can’t be derailed. He doesn’t let it get to him the way it gets to me. He spoke about it on The Colbert Report. If you bring it to their attention, a lot of people who use the word “r*tard” to call someone or a situation stupid will say, “I didn’t know.” My thinking is, “Well, now you do.” But I don’t want to tell people how to talk. I just want to advocate for one milligram of compassion for the children with special needs and their families and caregivers. It impacts us the same way the “N” word does—or any other exclusionary language, as director Brett Ratner learned the hard way when he used inflammatory language about homosexuals recently and had to bow out of hosting the Oscars.
There’s a tax that you incur when you use the “N” word or the “F” word, and there are groups, whether it’s the NAACP or gay groups, who will make you pay it. But if you use the “R” word, you’ve picked the most vulnerable target, because people within the intellectual disabilities population are not going to return serve. They aren’t genetically designed to confront you the way other groups do.
Cooper: That’s the power of Shriver and the Kennedy clan. Besides Special Olympics, they have Best Buddies, which creates a range of opportunities for people with intellectual and developmental disabilities.
McGinley: Best Buddies knocked me out as well.
Cooper: We have a video clip on our website with Andrea Friedman, of the TV show Life Goes On, who talks about being bullied as a girl growing up with Down syndrome.
McGinley: That’s why the “R” word resonates with me so deeply—not necessarily because Max has ever been exposed to it, so far as I know, but because I hate when people get picked on. I was one of those bigger guys who didn’t get picked on that much.
Cooper: I was the guy who would get in the middle of the bullies and try to stop the bullying, only I wasn’t really big enough (laughter).
McGinley: Of course. Use of the “R” word to bully is even more insidious, because it’s so ingrained, especially from 30-year-olds on down. With them, every other word is the “R” word. Every script I get has the “R” word in it.
Cooper: It’s amazing how they really don’t connect it with the reality of—like the “N” word with the rappers.
McGinley: Right. So when Tim invited me to be part of the voice of Special Olympics, I was like, “Let’s go!” We make people aware, and then if they still use the word, fine. You’re a jackass. Some filmmakers are aware that it’s hurtful and argue that it’s a really important part of their story. No, it’s not.
Language has such a powerful ability to diminish a population by perpetuating a negative stigma. How dare you do that? It just drives me insane, because there’s no tax on it. Whereas if you use “k*ke,” “n*gger,” “c*nt” or “f*ggot,” you’re done. Read the blogs I did on Huffington Post. I did two of them. The only way to get anyone’s attention is with that language. My conversation goes like this: “N*gger” is to “black” as “r*tard” is to “special needs.” Now let’s have a conversation.
“I didn’t know.” “Well, now you do.” It’s worse when people say, “Well, I was just making fun of myself.” I’m like, “So you were saying that you were just being r*tarded in a fun, self-deprecating way? Would you also say you were just being a k*ke?” Now we’re having a conversation that will end with enlightenment, and that person will not be so quick to disparage that population. But what a crime that I have to go to that extreme before I can share with you the harm that you’re causing with language.
Cooper: Do you realize that I’m going to have to figure out whether to publish those terms or not?
McGinley: (laughs) My blogs got more hits than everybody. Ariana Huffington said to me, “You’re on to something.” Yeah, filthy language with a message.
ndss.org (National Down Syndrome Society)
Photos by Nancy Villere – CrushPhotoStudios.com