[WARNING: This Article Contains Strong Language]
March 21 is World Down Syndrome Day, which, according to the official website, is a day to “help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.”
In August of 1997, actor John C. McGinley and his then-wife Lauren Lambert had a son, Max. The couple had eschewed an amniocentesis — a procedure in which doctors use a needle to draw fluid from the amniotic sac in order to test for various conditions a child may have — due to the risk of miscarriage. So it was only when Max was born that McGinley and Lambert discovered that he had Down syndrome.
McGinley, known by many for his work on the NBC comedy “Scrubs,” and the films “Office Space,” “Platoon,” and “Wall Street” (although his resume spans over 100 films and television shows), spoke with me about raising a child with Down syndrome.
Q: What was it like when you first found out that Max had Down syndrome? Were you afraid — not only for yourself as a parent, but that your son would have a difficult life?
A: We had a blood protein test and sonograms, and what they told us was that our baby was a perfectly healthy girl. Then Max came out, and he was a boy, and his twenty-first chromosome had tripled. The cosmic hammer that bashed us over the head with that revelation was profound.
You do a lot of “woe is me,” and there’s a good deal of sticking your head in the sand, and then at some point you realize that this child is going to need your help. He’s not the first child born with challenges, and you’ve got to suck it up. So, we did. When someone is born with Down syndrome, for the first couple of years, there is a parade of challenges that they’re most likely going to be exposed to — the “triple threat” being cardiac, cerebral problems, and digestive. Max dodged the gut; we dodged open-heart surgery on an infant. What presented was sleep apnea and seizures.
So those rotated through, and after a horrible protocol of different drugs — which doctors largely over-medicate our community, side-effects be damned — Max somehow charted his way through his seizures, and then was relatively healthy from when he was three or four on.
Was I scared for Max or for myself? There’s no time to be scared; there’s a call to verbs, there’s a call to do something. So, you start to marshal all the resources you can, and you become a cottage expert on twenty-first chromosomes tripling, and you do your best. That’s what happens. You stop working, you circle the wagons, and you try to get this kid and your family through what is wildly new information, and a new reality.
So, I don’t know if I was afraid for Max — there’s no time to be afraid because the wheels are f***ing coming off, and you’ve got to figure out something. There’s no manual for this. You’ve just got to do your best.
Q: Did people (friends, family, colleagues) say things that troubled you in the first weeks and months after Max was born?
A: The first thing — and it’s nobody’s fault; I think it’s part of the human condition — is to try to sympathize when you can’t empathize. People always say, “I’m sorry,” and you just want to grab them by the esophagus and rip out their throats. The inference being, “I’m sorry your son was born with challenges.” It’s very hard to process, and I don’t think people mean anything by it, but you hear it enough and it becomes a little bit of a sonic assault. You don’t want to hear peoples’ pity party because you’re in it up to your eyes — and peoples’ pity, which is horrible to begin with, is wildly misplaced.
Q: What has life been like? What has Max brought to your life?
A: I had no idea what love was until I met Max. I didn’t know what compassion was; I had no idea what patience was. Max is the glue that holds this family together. He adores his two sisters, Billie and Kate. He’s the glue. Everything we do is better when we’re a team, when we’re all together and we’re doing it.
Q: Countries like Iceland, the U.K., Finland, France, and the U.S. abort incredibly high percentages of children prenatally diagnosed with Down syndrome. What’s your view on that?
A: You should know I’m pro-choice, so I may not be the right guy for this [question]. I can’t walk a mile in somebody else’s shoes, so I don’t know what their circumstances are; I don’t know what dictates them aborting a birth. Since I can’t walk a mile in that person’s shoes, I don’t have a legitimate opinion. I can only tell you what happens in the McGinley family. We didn’t have an amnio, so we didn’t know that this child, this light that came into my life — I can’t imagine life without Max, but that’s me. I’ve walked a mile in my shoes, so I can give you that legitimate opinion. I can’t talk about Bob down the street or Steve across the way. I have no idea. I don’t know. That would be an uninformed opinion.
Q: What would you say to other families who might feel apprehensive about having a child with Down syndrome? What advice would you give them?
A: I can only speak for my truth, and my truth is that Max completed my life.
Q: Having read your piece on “the R-word” for Huffington Post, has anything changed or evolved since that publication?
A: Baby steps. I teach down at SC, and I did an event at UCLA the other day, and I work with screenwriters, and try to suggest “is there a better way to break that joke that you wrote in the first act of your screenplay that tips on the word retard or retarded. Is there a better way to construct that joke?” We explore that. That’s what I mean — baby steps.
Q: Is that a difficult thing in the industry? Is the use of that word pervasive?
A: It’s not the industry as much as it’s generational. Kids from like, high school to 35 right now, every other word out of their mouth is the R-word. So, it’s a big fat battle for us. So that’s what we’re doing. “The party was retarded,” “you’re a retard,” “the team played like a bunch of retards.” It’s so colloquial that it’s devastating. So, we’re in there digging.
If you’re watching movies — if you watch “The Descendants,” which I loved, but they’re going along, and then that kid in the back seat has to tell that joke, and for some reason, it had to be about the special needs community. If it was a joke about a “k**e” or a “n****r” or a “f****t,” there would be some blowback — but there’s no blowback when you pick on the special needs community. None. At least George [Clooney] rolled his eyes and kind of invalidated the joke, which was great. But it wrecked the movie for me. It takes me out.
During pilot season, there were a bunch of scripts, and I was like, “Nope, no interest.” Because if that’s what you’re writing in your pilot, that’s a poker tell for what your values are, and that’ll come up again. Not necessarily the R-word, but it’ll come up again in some other way if the show gets picked up.
Q: Is there anything you want to say that we haven’t covered?
There is something important I’d like to add. At the beginning of my interview with McGinley, I said the following: “I wanted to conduct an interview with someone who had experience with having a Down syndrome child.” McGinley quickly corrected me, saying, “We always put the person first. We say, ‘a person with Down syndrome.’ In other words, you don’t say ‘a cancer person,’ you say ‘a person with cancer.’ We always put the person first.”
That struck me in a profound way, and I feel it’s something that should be shared.
I’d like to thank John for taking the time to speak with me about such an important issue. If you’d like to learn about his work with the Global Down Syndrome Foundation, click here.