October is Down Syndrome Awareness Month, a time to educate and advocate as well as celebrate those individuals with Down Syndrome. I had a chance to speak with John C. McGinley today about one of the most challenging yet rewarding roles in his life.
It isn’t Dr. Cox from Scrubs or Stanley Miller from his new horror comedy series Stan Against Evil. This particular role was one that hit close to home, the father of a very special young man named Max.
That’s My Entertainment: Let’s go over the story of Max. When you first discovered that diagnosis, what were your original thoughts?
John C McGinley: I had no idea what Down Syndrome was, certainly not clinically. Emotionally…I didn’t know anything. We went to the hospital…the clear diagnosis from the blood protein and the sonogram was that this was going to be a beautiful little girl. We did not have the amino because we were discouraged from having the amino because Max’s mom (Lauren Lambert) was very healthy and I was healthy and there was no history of challenges in either one of our families, and so it was all supposed to be a Norman Rockwell painting and then Max came out, he was not a girl and his twenty-first chromosome had tripled so it was the equivalent of being smashed over the head with a cosmic hammer and the disorientation of it all.
The first person in the room as Max was in the neonatal intensive care unit was a representative of the state of California who said “the state would be more than willing to take charge of this individual if that’s what we wanted.” And I kicked him out of the room. I still don’t know what he was talking about never had the spine to look into it. Then you kind of bury your head in the sand for a while.
There is a trajectory that involved a woe is me component and sooner or later you get your head out of the sand and you see this little kid looking up at you and his need for help and intervention transcends any other pity party that you might invite yourself to and you start to get involved. You start to get second and third and fourth opinions from a medical community that would largely advocate for over medicating that population.
TME: One of the things you talked about in your 2014 interview on Hallmark’s Home and Family about raising a child with special needs is Integrated parenting and an integrated family. Can you tell me a little more about that concept?
JCM: I found that the parenting trap there is to lean into one side or the other. Billie Grace and Kate are the politically correct term is typical kids and Max has Challenged. To lean too hard into accommodating Max’s challenges and compromising Billie Grace and Kate is tricky and then to lean too hard into the Billie Grace and Kate capacity to learn and leave Max behind is a trap. So there is a sweet spot in the middle there that you can only find when you are in it. There is no guide; You can only find it when you are in it.
This is something that you did through trial and error? Did you have had from medical professionals? How did you discover this?
I would say between Max’s mom who is a phenomenal advocate, my sensibilities and connections to the medical communities, and the Global Down Syndrome Foundation, mixed with Nicole’s influence; that’s a lot of incredibly clear thinking, an objective adult intervention that if you can assimilate all that input you have a chance.
In raising a typical teen/young adult there are social issues that can arise in their development. What were some of the social challenges you had raising a teen/young adult with down syndrome?
The hardest thing to wrap your head around and the three dirty little secrets of overall with down syndrome is that its hard as a teen going forward to have age-appropriate friends. I can’t be a hypocrite on this. I didn’t have any friends who were born with Down Syndrome when I was 16 or 17 years old. It’s heartbreaking and it’s very hard to see this community largely left to fend for themselves largely in a friendship trajectory and so you rely on family, a lot. Max depends on Billie Grace, Kate Max’s mom, and Nicole. You have to generate friendship and that’s a really hard one to swallow because you certainly can’t force a teenager to be your son’s friend, nor would you want to but that one is a really hard man.
TME: Do you feel now that Max is 21 and do present-day medical care and medical professionals better equipped to care for individuals with special needs, specifically down syndrome?
JCM: No. Certainly not. Not unless you have the web of resources to get a second, third and sometimes fourth opinion until you arrive at a caregiver in the medical community who is at least peripherally versed in how to treat someone who’s 21st chromosome has tripled. Since that is such a low priority in any medical program, it’s on the parents or on the caregiver’s shoulders to find someone who is appropriate for their son or daughter. It’s really hard and it’s profoundly disturbing.
John involved himself with an organization that is to significantly improve the lives of people with Down syndrome through research, medical care, education, and advocacy. This organization was led by CEO and founder Michelle Sie Whitten who also has a child with Down Syndrome. John recalled how he got involved and became one of the members of the board.
TME: Tell us about your history with the Global Down Syndrome Foundation.
JCM: The groups I had been with have largely been Kumbayaa let’s hold hands and make pamphlets. I wanted to be more proactive and more aggressive. I saw my friends who were working with aids advocates and breast cancer advocates and wondered why aren’t we doing something like this.
Michelle Sie Whitten and I met, and told me “we have all four lobbyists on staff in Washington D.C., and we’re building a wing down at Children’s Hospital in Denver in the Linda Cyrnic institute as well as the Sie Center for Down Syndrome.
We’re a researched and medical based organization who just want to improve the people with Down syndrome lives through research and medicine.” Then I was in. I wanted to be with people who are aggressively attacking how to make these people’s lives better and that is what happens at Global.
TME: Global also does a be beautiful be you a fashion show that you just came back from. Tell me a little bit about that.
JCM: It is a now a five-year tradition with my family. It is the single biggest fundraiser for people with down syndrome and down syndrome research on the whole planet. And everything that could have possibly gone right this year did. At these type of events, it’s a had thing to authentically say. From Jamie Foxx to Colin Farrell and some of the other celebrities that we were lucky enough to have joined us, and the lineup of models all of whom are people born with down syndrome, it was one of the great nights of my life.
TME: Where did the Spread the Word to End the R-Word Movement originate?
JCM: It started almost ten years ago now, Tim Shriver invited me up to the Special Olympics World Winter Games hosted in Boise Idaho and I went to events and then Tim invited me to a youth leadership activation conference which is a component of every world games.
In this Youth Leadership Activation conference, there are about 200 of the athletes were also self-advocates. It was a whole nother concept I had to wrap my head around in a copious way. All these self-advocates in this auditorium and they tabled different ideas and different conflicts that were impacting them all around the world. And to a person from South Africa to England, to Australia, the kids from South America… a lot of the athletes said they were fed up with the word retard/retarded.
And we started to craft this campaign and then the athletes shaped it and we made it viral and all of a sudden it became a movement. Understand it’s baby steps. The r-word retard and retarded are used as much today as ever. And so it’s baby steps for us, but we feel we are moving in the right direction.
TME: People feel awkward when they have to interact with someone with special needs. Whether it’s their parents or the individual themselves. As a parent how would you suggest an individual approach you or individuals with intellectual disabilities?
JCM: There is no real pragmatic answer to that. I would approach them with kindness and compassion. Try not to put them on the spot.
That’s how I approach people with the r-word because if you tell people how to talk their emotion and spiritual fists are gonna go up and so I invite people and just ask people if there isn’t a better way to say what they just said. For example, if someone says “… the party was retarded” and they say “what?” and I just say “you just said the party was retarded”. And they say, “Oh I didn’t mean anything by it” and you just say.” Well, that’s really offensive to us.” Now all of a sudden we are having a conversation. It’s born out of the entre into..” isn’t there a better way to say that?” Then the person invariably says what? They will never say F-you. And I just find that in engaging in dialogue especially when you want to shape language which people are entitled to use any way they want unless they say a fire in a movie theater. When it comes to people using the r-word the fact of the matter is that they are liberally allowed to use it, so you gotta meet people halfway on that one.
John is an international spokesperson and board member of the Global Down Syndrome Foundation as well as for the Special Olympics and the End the Word movement. Currently, he stars as the reluctantly retired sheriff of Willard’s Mill on IFC’s horror comedy Stan Against Evil premiering on October 31st 10 pm E/P.
You can follow him on twitter @JohnCMcGinley
There are many more questions that were left unanswered but there is a lot of information available on the organization he mentioned for those parents and caretakers who are seeking more information on what options are available for people with Down Syndrome for care, education as well as support groups that are available all over the world. There are even downloadable .pdfs in multiple language formats for educational purposes.
Global Down Syndrome Foundation: https://www.globaldownsyndrome.org/
For those wanting to get involved and participate to create communities of inclusion, there are two sites, the Special Olympics as well as the Spread the word to end the word site listed below. Both are great informational resources.
Special Olympics: https://www.specialolympics.org/
Spread the Word to End The Word:
Midnight Mass: The Blood of Life
The isolated island community of Crockett receives a mysterious new head priest, full of secrets and a brand new testament under a very unusual Messenger of God.
Meet poor Riley Flynn (Zach Gilford), freshly released from prison and wracked with guilt over what got him there, a stupid drinking accident that caused the death of his ex-girlfriend. The last thing he wants to do is go back to Crockett and the judgment of the mostly religious community there, his disappointed family, and the nightmares of his ex’s death that plague him. But where else would have him? Resignedly on the ferry, he goes.
Riley’s dad Ed (Henry Thomas) isn’t the kind of man who talks very much at all, much less about his feelings, or his very real disappointment in his elder son. Riley’s teen brother Warren (Igby Rigney) has no idea what to say to him either, and just generally keeps mum. Riley’s mom Annie (Kristin Lehman) is accepting and loving, hesitant in how to help her eldest son but never wavering in her faith in the help of our lord Jesus. Mom seems to think a good heaping dose of the Church would set Riley right but is surprised to learn that the old priest of the Parish, Pruitt, has taken an extended leave of absence from the island, and his newcomer replacement Father Paul (Hamish Linklater) is young, charismatic, and bursting at the seams to tell the whole island about the gifts he brought them, most especially what he claims as a new testament under a messenger of God.
We’ll get back to that whole ball of issues in a moment, the other interesting characters of Crockett Island. Bev Keane (Samantha Sloyan) is the nightmarish overly polite and gently, almost lovingly condescending neighbor Christian woman you’ve ever loathed, the kind of person who explains away every last thing her Church may do wrong or contradictory because, after all, God works in mysterious ways. Pfft. Of course, Bev immediately ingratiates herself as the second to the new Father Paul in their services and is the first to start covering up his transgressions as they become more rampant.
Newcomers to Crockett Sheriff Hassan (Rahul Kohli) and his son Ali (Rahul Abburi) present a burgeoning problem to the plans of Father Paul and his shadowy companion, for they are both practicing Muslims. The practical side of investigating these so-called ‘miracles’ and strange happenings falls on Hassan’s shoulders, as he already struggles with barely-concealed racism and suspicion from his fellow islanders, and of course his son is being wooed away from him by the promise of actual, tangible miracles, but from a different whole faith and God. Father Paul definitely does not practice a traditional Christian faith and relies far too much on making use of the eucharist, the ceremony of the blood and flesh of Jesus Christ turning into bread and wine and, well, consumed.
Wade (Michael Trucco) and his wife Dolly (Crystal Balint) are lifers of the island and both in general interested in one thing, the advancement of their own family, specifically their daughter Leeza (Annarah Cymone), who happens to be in a wheelchair. And that happens to be the canny Father Paul’s first real miracle-with-a-cost that he demonstrates to the astonishment of the parishioners, after a heartfelt and rousing sermon, Father Paul commands Leeza to rise, to stand, and to walk. And lo, she does. What parents wouldn’t wholly dedicate themselves to a cause after seeing this happen to their beloved precious daughter? The fringe benefits of healing, and power, the ones that come at a mighty, currently unnamed, cost, are simply a nice bonus.
Joe Collie (Robert Longstreet) is the town drunk, and while his reasons for drowning his sorrows in the sauce might be understandable, absolution wears a very different face when it comes from Father Paul. While Leeza might be willing to forgive Joe, and even as Joe begins attending the newly-formed Al-Anon meetings on the island of course hosted by Father Paul, redemption might’ve been better sought from medical professionals, and not this newfound method of religious worship.
Dr. Sarah Gunning (Annabeth Gish) is the islands’ kind of all-around medic, and this is how she and Riley’s old friend Erin (Kate Siegel), also newly returned to the island, a few months pregnant but traveling quietly alone, met when Erin comes to the Doc for obstetrics. Sarah’s older mother Mildred Gunning (Alexandra Essoe) has many medical and mental issues, and Sarah struggles in their shared home, to take care of her addled mom and balance her own life. Then Father Paul takes it upon himself to visit one of his oldest parishioners, bringing the sacred host and wine with him to give directly to Mildred, who starts looking and acting so much better under his loving care.
The show is very much a slow slow burn, with a lot of the actual action taking place in the last two episodes. Much of the beginning and middle episodes feature two people just sitting alone, having quiet and seriously in-depth conversations about heavy subjects – grief and repentance, what happens when we die, the disasters that come as a result of addictions, how our actions’ consequences reverberate to those we love around us, faith and the foibles of man, and of course, the giving of oneself over to a higher power, for strength, and guidance, and love.
Except, for the higher power that Father Paul brought back with him, to share with his beloved flock of Crockett Island, while it may be extremely powerful and full of what could be considered miraculous magic, everything comes at some kind of a cost. And when the Messenger of God is finally revealed to the shocked denizens of Crockett at Easter Mass, with Father Paul rapturing on about rebirth as the bloody massacre begins in earnest, it’s faith, not in any kind of God or religion, but faith in each other, that may save a few hardy souls.
Question the wisdom of your religious leaders along with the rest of us in a fine slow-burn addition to the Flanaverse, Midnight Mass is on Netflix now!
Saw X: It ain’t brain surgery!
Legendary executioner Jigsaw returns to exact revenge on a cadre of scam artists who promised him a bogus cure for his cancer!
First off, be aware, that this is what I call an interleaved sequel, a movie set between previous films in the franchise. In this case, Saw X occurs after the events of the very first Saw film, and before Saw II. Everybody got where we are? Good! Into the madness, we dive!
So, as we all know, John Kramer’s been diagnosed with cancer, very aggressive brain cancer, and likely doesn’t have much time left. And he’s tried everything under the sun, doing a ton of meticulous research, we’d expect nothing less from our master of the art of murder, and not one thing has worked. Yet one man from the support group for cancer sufferers, Henry (Michael Beach), offers an off-the-books supposed miracle cure, and John jumps at the chance.
Why does this nonsense always sound too good to be true? Because it is. Deleted scenes from the first Deadpool movie already told us why traveling to Mexico for any kind of medical cure is a sublimely stupid move, but Kramer is desperate. And while he might be sick and dying, John Kramer has never been what anyone could call stupid. So the villa out in the Mexican countryside, the affable cab driver Diego (Joshua Okamoto) professes surprise at Kramer being highjacked for his good, the nervous muttering from assistant Valentina (Paulette Hernandez), the side-eyeing from little housekeep Gabriela (Renata Vaca) and her tequila, and most especially the smooth and smarming reassurances of head “doctor” Cecilia Pederson (Synnove Macody Lund), all leave a kind of sour taste in John’s mouth.
The whole cluex4 scene is done in the style that the Saw films are known for, where we the audience are treated to cut-together explanatory scenes in a flip-flash fashion of usually about two minutes, for poor John when he realizes he’s been hoodwinked and just how badly, seems a little contrived. But then it’s entirely possible that we the audience truly expected our genius mastermind of the infamous Jigsaw murders to have realized what was happening sooner, and got enraged along with Kramer. And cheered as he prepared to take his bloody and ultra-violent revenge!
First up in our grand guignol of executions is the return of Jigsaw’s first protégé, Amanda (Shawnee Smith). And despite her avowed reverence for Jigsaw and his proven “therapy”, Amanda does waver a bit when the scammers are put through the paces of their specially-made Saw traps, and they shriek and blubber and bleed out. The appearance of the ringer of the bunch, Parker (Steven Brand), doesn’t even slow our beloved engineer of the damned down, because we knew Jigsaw would have his other apprentice waiting just off stage, the deliciously vicious Detective Hoffman (Costas Mandylor). Even the monkeywrench of involving little-boy soccer fan Carlos (Jorge Briseno) in the traps, is just another cog in the machine that is the brilliantly plotting mind of John Kramer.
A fine addition to the Saw legends, showcasing a return to the beloved style and panache of the original Tobin Bell-starring Jigsaw films, Saw X is splashing gore and gallons of blood in theaters now!
Scott Pilgrim Takes Off
“Scott Pilgrim Takes Off,” Netflix’s latest series, is a rollicking journey through the world of video game culture, blending nostalgic references with a fresh narrative twist. Centered around Scott Pilgrim, portrayed with magnetic charisma by Michael Cera, the show skillfully integrates gaming elements into its storytelling, creating a delightful homage to the video game subculture.
The series cleverly employs pixelated graphics, power-up animations, and game-like sound effects to bring the virtual world to life. These visual cues, reminiscent of classic video games, enhance the storytelling and resonate with audiences familiar with the gaming landscape. The attention to detail in recreating iconic gaming moments is commendable, creating a visual and auditory treat for enthusiasts.
The exploration of video game culture goes beyond mere aesthetics; it becomes an integral part of the characters’ identities and interactions. The script intelligently weaves gaming terminology and tropes into the dialogue, effectively blending the real and virtual worlds. The series navigates the challenges and triumphs of the characters through the lens of gaming, making it a unique and engaging experience for both gamers and general audiences.
The ensemble cast, including standout performances from Mary Elizabeth Winstead, Ellen Wong, and Chris Evans embraces the gaming theme with infectious enthusiasm. The chemistry between the characters is palpable, adding emotional depth to the series.
“Scott Pilgrim Takes Off” successfully taps into the zeitgeist of video game culture, offering a nostalgic yet contemporary take on the gaming phenomenon. It’s a must-watch for those who cherish the pixelated roots of the gaming world while providing an accessible and entertaining narrative for a broader audience. The series takes off not only in its title but also in its ability to soar within the ever-expanding realm of Netflix originals.