LOS ANGELES, USA – “I think James was two when I got sober and part of the fuel that I used to get straight, get off alcohol, drugs, and all that stuff,” Colin Farrell said to us about his older son, who has Angelman syndrome, a rare neurogenetic disorder.
Movingly and eloquently, the actor opened up about James in a recent panel at the Golden Globe Foundation office in West Hollywood.
James, who is nonverbal, inspired his father to launch the Colin Farrell Foundation, which “is committed to transforming the lives of individuals and families living with intellectual disability through education, awareness, advocacy, and innovative programs,” according to the foundation’s website.
“In many ways, James has taught me to take care of myself, through him needing me to take care of him and be around for him,” Colin continued about James, the star’s son with his ex-partner, model Kim Bordenave.
The two-time Golden Globe winner for best actor in a comedy or musical, The Banshees of Inisherin (2023) and In Bruges (2017), has another son, Henry, 14, with singer-actress Alicja Bachleda-Curús.
In our freewheeling panel, Colin candidly answered questions. We began with the actor recalling James’ Angelman syndrome diagnosis and how it motivated him to change for his two sons’ sake.
“The most significant part of the fuel, the most pure fuel I had, was knowing that James had some health issues,” said Colin, who stars in HBO’s The Penguin (he is terrific in the title role). “All children need their parents, a parent, a grandmother, or somebody to care for them, but I knew that James had profound, significant developmental delays by that stage.”
“I didn’t know what direction it was going to go because he was still young enough, but he was already having seizures. I don’t know if we’d had the diagnosis of Angelman syndrome at that point.”
“James was misdiagnosed with having cerebral palsy, which is a common misdiagnosis because cerebral palsy and Angelman syndrome share similar characteristics. But he taught me to take care of myself.”
“He taught me to access within myself a desire to live, even if it was initially more about me thinking that I wanted to live and I needed to live to be around for him.”
“The great gift with that is the way that through the years I’ve found reasons that I want to live that are for me as well. A byproduct of that is being able to then put that regard back out in a purer way than it would’ve been before, perhaps.”
“James is incredibly strong, brave, and strong-willed. He works so hard to achieve physical capabilities that most of us nail by the time we’re two or three. He has a lot of significant struggles, but we all do.”
“When James walks into a room, you go, ‘Wow, what’s that dude got going on?’ It’s significant. He’ll never be able to take care of himself.”
“He has taught me the power of the will and what he’s teaching me now through the foundation: that our responsibility and ability to operate in our highest calling as human beings is truly when we’re considering others. It really is.”
“And again, the way that falls back on ourselves is that somebody could say, ‘Yeah, but you’re only helping that blind person across the road because it feels good.’ Of course, it feels good. It’s not an either-or; it can be both.”
“You can be doing it for pure reasons because you want to be of assistance, of care, of service—and you should acknowledge that it does feel good.”
“Not good in terms of, oh, aren’t I great? But good in terms of, Jesus, don’t I feel connected to my fellow human being through this act of service or this act of communion?”
“James has taught me a lot, but both my boys have taught me. I really do feel that both of my boys have raised me more than I could ever raise them. I know that sounds quaint and twee to say.”
“It’s a bit of a fridge magnet thing to say, but it’s very true. Whatever man I am today has a lot to do with my parents and my upbringing and stuff.”
“But it’s also very much to do with what my boys, by their mere presence in my life, have asked of me.”
Asked about the most important lessons he learned in his advocacy for James and people with intellectual disabilities, the Irish thespian answered, “The biggest thing I’ve learned is more of a confirmation of what I already suspected, based on my own experience, rather than anything that was a eureka moment of, oh, I didn’t know that was happening.”
“What I mean by that is basically the reason why the foundation was established. As I said in the interview with People (magazine), with all the good fortune I’ve had in my life, in my career, and financially as a result of that career over the last 25 years, I’m in a position now as one of James’ two primary caregivers—his mother and me—struggling to find and figure out what the rest of his life is going to look like.”
Colin elaborated on how government support programs for families with children who have special needs ended when James recently turned 21:
“And particularly the next chapter, as he turned 21 on Thursday (September 12). Now, of the benefits that have been locked in place and the firewalls that offer him safety, security, and a form of inclusion and community, after-school programming, all that stuff, it’s all gone away.”
“Looking at the next chapter of James’ life and what it’s going to be like, because for 21 years he’s been under the umbrella of his mother’s care and my care. He’s been offered a certain amount of assistance by the state and by the federal government. It’s all gone, and so it’s a new world.”
“Even with the means that I have, it’s a struggle to particularly find suitable residential care, where James can go and live—and live a really happy and connected life where he feels like he belongs within the community, where he can be challenged, where he can be taken care of, and treated with a similar version of the love that myself and his mother have been able to share with him over the years.”
“In realizing that, I thought, Oh my God, if I’m having these difficulties, what about all the other families out there that don’t have anything close to the means that I have? The confirmation I got of the horror of my suspicions about the degree of struggle that families with a child who was becoming an adult with special needs were confirmed by the response to the piece that I did in People magazine.”
“Within the first two days, we received 8,000 emails. I can confirm that Paula Evans, who’s the CEO of the Colin Farrell Foundation, has responded to every single one of them.”
“The depth of struggle and the horror of fear that is utter powerlessness in the face of trying to guarantee security. None of us can guarantee security or a secure life for our children, whether our children have special needs or whether our children are typical, as we would say.”
“Life is full of mystery. Life is full of challenges. None of us know what’s coming around the next corner – but the dearth of support that is there for families who are living with and caring for a child with special needs, particularly as they get older, is astonishing.”
“It’s cruel, and it’s just apathy and lack of action. It’s absolute inaction. And it’s just money again. It’s just money going into all the wrong places. I do think that it’s beholden on us as a species and as a race of people, as human beings.”
Colin recalled how visiting a children’s hospital in Ireland during Christmas nurtured his desire to help.
“There’s a hospital in Dublin called Our Lady’s Children’s Hospital,” he shared. “It’s in Crumlin. That hospital has been the victim of incredible underfunding for decades. It was a place that I used to go with my sister every Christmas when I was home in Dublin.”
“A lot of the sick children in Crumlin would be allowed out for Christmas Day, so it wasn’t the busiest day of the year. But there were still a lot of kids there, with everything going on, from sickle cell (anemia) to leukemia to all manner of cancers, and a lot of families with them.”
“I always knew I wanted to do something, but I’ve just been really self-centeredly busy raising my own two kids. And then, as you know, I work a lot, so when I’m not working, I just want to be home with my boys and be a dad as well because I’m very aware of time being as fleeting as it is.”
“Now, with James being 21 and Henry 14, the boys are up and running. James is about to enter the next stage of his life, whatever that may be and wherever it may hold him, so I felt like I just had a bit more space to do something.”
“I feel like it’s early days for the foundation, but I feel like all the film work over the last 20 years has led up to what I hope this will become.”
“Through the years, I’ve been profoundly impacted long before the foundation was established. I’ve heard some horror stories. I won’t articulate any of them here because that would be unfair.”
“But I’ve heard some extraordinarily shocking, horrifying, upsetting stories about what can happen when the family is struggling to care for their child. Particularly in terms of an adult, where the parents are 65 and the child is 35 and the child isn’t toilet trained and can’t wash himself.”
“I’ve heard about stories where the parents don’t have support and they’re trying to shower their child, take their child to the bathroom, feed their child, and maybe deal with their child’s behavioral issues, maybe with some moments of aggression.”
“At times, those stories have gone to places that you wouldn’t even imagine were possible. And yet, as a father of a child with special needs, having experienced other people’s stories and my own frustrations, from a place of compassion, I can understand how things could get as dark as they do.”
“It’s not just the beautiful stories that are inspiring. To be honest, it might well be that the more horrific, tragic, and heartbreaking stories are the ones that really fill you with the fuel to go forth, try and be a part of a team that are trying to promote fundamental change.”
The 48-year-old actor spoke out on the stigma of children who have special needs and how his foundation hopes to promote inclusion: “It’s much better now than it ever was. When you and I were growing up, I remember kids in the neighborhood and in Dublin who had Down syndrome and they were kept home. It was a world that didn’t really want to know about this area.”
“It wasn’t ‘interesting’ to include them in social activities—or even see them. I think parents were paranoid. I think there were probably countless parents who lived and live with enormous shame because they didn’t know they were doing their children a degree of disservice by keeping them home.”
“They probably thought—and maybe they weren’t fully wrong either—that they were protecting their children by keeping them out of the eyesight of the majority of society. But it was a great and gross disservice to that child, and it limited their ability to feel connected and their ability to learn and to gain new skills.”
“The world has changed now. It’s a much better place. The Special Olympics as a foundation has done extraordinary work through decades of opening people’s minds to the possibility of the power of inclusion and to the idea that inclusion is something that is a communal responsibility—or should be a communal responsibility.”
“We want to do so much. It’s early days yet. We’ve had a few meetings with the (foundation) board, and we’ve got to sit down now and really draw a plan of action.”
“Ultimately, we would love to have a certain amount of funding to help others. There are hundreds of millions of dollars of funding that are allocated state by state to various organizations that we will work in tandem with.”
“We’re not reinventing the wheel as a foundation. There are extraordinary human beings who have their own foundations, who are working tirelessly, daily, on behalf of our children.”
“But we also want to educate people and give people the opportunity to see into the lives of our children. We want them to see how engaging our children are and see how beautiful their lives can be, even if their lives look different from anything we recognize as achievement, success, or adventure.”
“Their lives are filled with adventure. And success is not the golden chalice. It’s not the golden cow that we all recognize. It’s not monetary gain. It’s not fame. It’s not all that stuff.”
“It’s the smallest things that are huge. The incremental journey of growth and expression that our kids go on is really heart-lifting. And so, we want to have outreach centers.”
“We want to have daycare centers as well. Loads of them exist but not nearly enough. There are at least 750,000 individuals who are living without the care that they need in America. There are so many out there who are struggling for so much.”
“And then, it’s about the practical things like diapers for grown-ups; things that families are struggling with. There is a bunch of outreach issues that we really want to get on top of.”
“Funding will be a huge thing, but if we can eventually get into the legislative side of things and have something that’s locked in that will be sustainable, that will be a guaranteed amount of money for years—then we’ll have to get into serious budgeting and find out where that’s allocated.”
Colin revealed that opening up about James for the first time for that People magazine cover story was a big decision.
“Yes, for sure,” he began. “I mean, I can’t ask James. I talk to James as I’m talking to you now. I talk to him as if he is a master at the Queen’s English. I talk to him exactly the same.”
“We have chats and all that, but I don’t believe that James has the level of comprehension that some people say he does. I hope I’m not wrong because there’s an awful lot of shame there. I want to meet him where I think he is and I think he’s perfect as he is. I can’t ask James. That’s what was so hard about it.”
Asked what he thinks James is learning from him, Colin admitted, “I have no idea. Everyone’s a mystery to me. I was going to say James is a mystery to me. He’s nonverbal, but Henry’s a mystery to me, too. I’m a mystery to myself sometimes.”
“We’re all a mystery to each other, but what is James learning from me? I don’t know. I would just hope that he’s learning from me that it feels good to be loved, respected, included, and taken care of.”
“One thing I can really say—I feel a hundred percent certain about this. One thing that I can tell about James through the years is he knows when somebody wants to be with him and he knows when somebody’s just supposed to be with him.”
“So if James has a carer, a teacher or somebody who’s doing physical therapy with him, if they’re not fully engaged and fully loving being with him, he’ll know it and he’ll switch off. And he won’t be on task. He won’t do what he’s supposed to do.”
“His behaviors will come out. He’ll start pushing away. He might give you a little kick. James is a really lovely young man. He’s funny as fuck. He’s cheeky as anything. He’s got a smile that would light up Manhattan.”
“He has such a gorgeous spirit and he’s loads of fun to be around. And when people are connected to him, that’s when he’s at his best. And that’s what I hope for every child, of course. But what has he learned from me? I don’t know. To sleep in late.”
The loving dad obviously spoke from experience when he talked about the best way for people to engage with James: “Just ask. Maybe some people will get their feelings hurt. But if I’m with James and somebody says to me, ‘What’s going on with him?’ ”
“Literally, if someone comes up to me in a Subway sandwich shop and James is there and they say, ‘Is that your son?’ I say, ‘Yeah.’ And they say, ‘What’s going on with him?’ I’ll say, ‘He has a condition called…’
“Some parents may go, ‘What do you mean what’s going on with him?’ I’m not. I’m like, ‘What’s going on? I’ll tell you what’s going on with him.’ ”
“When James was born, we thought he was perfect. He is perfect, but we thought he was physically perfect and neurologically perfect. And it turned out that he has a condition called Angelman syndrome, which means that he’s nonverbal and that he has trouble moving around the world physically.”
“He’s not completely in control of his muscles and his actions. Cognitively, he’s not where he should be at 21. But he’s magic, and he has a really full life. And my job as his dad and his mom as well is to make sure that as many people know about him as possible.”
“I would say that to everyone. Bullshit only exists in the shadows. Harmful stuff really only exists in the shadows. As soon as anything is brought into the light, it loses its power of negativity. I mean, it holds on.”
“So I would say, find our kids fascinating. You can stare a little bit. It’s different. It’s okay. And too much staring and not asking a question might not be great, but let’s all ask each other.”
“Let’s all educate each other. I’m still getting educated. I’m the father of one child who has special needs. I’ve met thousands of families through the years. It’s been one of the great gifts of my experience as an actor.”
“What it’s brought to my life is that it has afforded me the opportunity to meet thousands of families who are experiencing varying degrees of struggle. But, yeah, let’s all have a chat about our kids and about what they need, what makes them seem different, and also what makes them the same as any other child.”
Looking forward, Colin encourages conversations about these issues, which are relevant throughout the world.
“Conversations are happening, and after conversations become action,” he said. “So we need to start having conversations in Latin America, in Ireland, in America, and all over the world. There are already conversations happening. As I said, people are doing extraordinary work, but we really need to get out there.”
“It’s tricky. Some parents will say, ‘I don’t want to put my child anywhere. I want to take care of my child.’ And I respect that, too.”
“My horror would be that James would be put somewhere. I mean, if I have a heart attack tomorrow, and God forbid James’ mom, Kim, has a car crash in a month, and she’s taken, then James is on his own.”
“Then he’s a ward of the state, and then he goes where? Then we have no say. So we want to find somewhere now while we’re still alive and healthy that we can go and visit and we can take him out. We want to find somewhere he can have a full life, where he feels more connected.”
“I know about my son. He’s ready to get out of the house. He’s had enough of me. He’s had enough of his mother. She would say the same.”
“He’s ready to get out and have a bigger life than I can afford him, by having a sense of community that he feels connected to, by going out in their van every day and going to Ralph’s and doing the shopping list together, by walking around Ralph’s with the shopping cart half being pushed by him, half pushed by his carer; by going to the beach together, to museums, the movies, all of that kind of stuff.”
“Just a connected life. What does somebody who has special needs give to the community? He or she gives to the community an opportunity for them to access the best version of themselves without any apology, any hesitation, and have that aspect of themselves go out into the world because everything else is so much competition.”
“Everything else is, what does the person to the left of me have? What does the person right to me have? How do I get ahead?”
“All that goes away when we focus on those who are struggling and haven’t got the ability to take care of themselves. It’s incumbent on us, and it’s our responsibility—only if we choose it to be, and we should make that choice to care for each other.” – Rappler.com
